Tuesday, December 11, 2018
Sunday, August 19, 2018
Not The End....
In early February 2018, there was some notable growth of my cancer, so I decided to withdraw from the TAS120 trial. Pat and I traveled to The Cholangiocarcinoma Foundation's Annual Conference in Salt Lake City, Utah via the California Zephyr Amtrak train and route from Effingham, Illinois. We reconnected with many cholangio friends and advocates, and then flew to Las Vegas to spend a few days with Pat's son, Tom. Pat and I returned home for about six days, and then jetted off to the Sandals Grande Antigua Resort & Spa for a week.
After that month of traveling, it was time to get back to needles and doctors' visits. Pat and I returned to Houston. I started the FF10502 trial, a Fujifilm trial, in March. By June, that trial wasn't working either, and I was feeling worse, so I withdrew from that trial.
During the last week of June, Pat and I drove from Houston to Gulf Shores, Alabama to spend a week on the beach with my girls and their families. We drove back to Houston after that and decided to return home to decide what my next steps might be.
I could tell my body was getting tired, mentally and physically. As most cancers do, especially when you live as long as I have, my cancer is becoming less responsive to treatment. Life is getting a little harder, but I am not in a lot of pain. I have been fortunate to not know what serious pain is.
What I look forward to in life is seeing my children, my grandchildren, spending time with my family. My daughter, Jennifer, is a gestational surrogate for some friends, and I am looking forward to the birth of that baby later this week.
At the time of my diagnosis, the doctors told me I had a 5% chance of living six months. Luckily, we decided to get a second opinion at M.D. Anderson. Now, seven years and five months later, I have been able to experience so much. All four of my daughters are married with two children. Life has been a beautiful journey. Though I'm only 53, I feel like I've lived as much as many 100-year-olds, and I've had the time of my life.
I am not accepting visitors, and I rarely return calls or messages. Please respect my family's and my privacy during this time. If you would like to send a card or letter, please send it to me at: Patty Corcoran, 4442 N. Suntone Road, Olney, Illinois 62450.
This journey has been so much easier because of my faith. Even when times have started to get a little dark, I can rest assured my life is in God's hands. I will continue to leave it in God's hands, because he's carried me this far on my journey.
In closing, I want people to realize that this is just a quick update, and that this isn't the end... yet.
Tuesday, January 9, 2018
Still Marching!
I just started Cycle 6 on the TAS 120 trial for intra hepatic cholangiocarcinoma. I was in Houston one week ago for bloodwork and a dr visit to see how things are looking. My bloodwork was acceptable so on we go for another two cycles (six weeks) before a scan just before Valentine's Day. I will keep you posted on my results but until then....I am living life like a normal person without cancer....mostly. The only real side effects from the trial drug are occasional "run as fast as you can" to the can incidences...and the fingertips are pretty sensitive and somewhat splitting open from being dry. I wear thin cotton gloves to bed after slathering on Aquaphor but they still dry out throughout the day. BUT, they are manageable for the most part.
The rest of January and February are packed full of events for the Corcoran household! This Saturday, we will be attending Andrea's Night in Evansville, Indiana. It is a fundraiser for college scholarships and also a portion is donated to The Cholangiocarcinoma Foundation. Andrea Fuquay passed away around 8 years ago from cholangiocarcinoma but her husband is still dedicated to helping fund research for a cure!! Three of my daughters and their spouses, Pat and I, his sister Lisa and her husband John, plus a CC patient on the same trial as me and her husband will all sit at our table. This event is such a fun evening so I am truly looking forward to it. We will also entertain Kathi Wagner representing The Cholangiocarcinoma Foundation who will also be sitting at our table!!
Then, I will travel to Georgia, Mississippi, Houston, Chicago, and then on to Salt Lake City for the Cholangiocarcinoma Foundation Conference. It is a 3 day conference for patients, doctors, researchers, caregivers, and drug companies. It will be the 3rd year that Pat and I have attended and it is always a great educational experience...and like a big group patient family reunion. The conference is such a great opportunity to meet the top doctors and researchers...to meet with people who have traveled this road in one form or another. This conference brings hope to patients as we hear the most up to date information from individuals from all over the world. I would urge anyone affected by CC as a patient or caregiver to try and attend at the end of January. I will also attend some meetings while in Salt Lake City with a couple of drug companies as a patient with my experience on clinical trials. I am honored to represent the Foundation by sharing my knowledge as a patient on my 4th clinical trial.
Cancer has no borders.....no matter your religious belief, your education, your bank statement, your profession.....cancer does not care! Remember that as you meddle through your day to day life. Appreciate the little things....the big things....do not put off telling some one you love them. All you have is today....live it!
After the Conference, Pat and I will go to Las Vegas to visit his son, Tom, for about 5 days. After returning home, it is back to Houston for a scan. Then, we will be on the beaches of Antigua at a Sandal's Resort for a week. This will wrap up and I am hoping March will a bit more calm for our household. I love the "get up and go" lifestyle but this is a bit too much for me!!
I am back to painting more and more. I just finished a cow for a CC patient and plan to get it in the mail to her soon. Next is a painting for the St. Joe Art Auction coming up very soon! Speaking of painting.....I received the most thoughtful gift from an Indiana artist....and signed print from him. I won't mention names but he is VERY well known for his artwork. I am a fan and so touched by his gift!!
We are also cleaning at the Corcoran household. The 3 spare bedrooms that still had a lot of "left behind articles" from 5 girls that have lived in this household, has been removed or thrown away. Some stuff was donated to Goodwill in Vincennes....and some was burned. It sure looks better and after some new paint and having the carpets cleaned, will be ready for some serious grandkid sleepovers!
My daughters and their families are all really busy now in one way or another. Amy/Rylan moved into their new home over Christmas break. Samantha/Chris are busy getting the nursery ready for baby #2. Jenn/Bart just remodeled Zuber Law offices and it is an amazing and welcoming change! Leslie/Rhett hosted Christmas Day at their home in Lawrenceville, IL after adding on an extra family room along with a master suite! Everyone is busy with all kinds of good things happening! My step daughter, Kate is getting ready to move to San Juan with her boyfriend, so we are enjoying her company before she makes the move!
Slow down and truly enjoy the little things in life. Thank God for every minute even when life gives you lemons. He is right beside you....ALWAYS!
God Bless!
Patty
The rest of January and February are packed full of events for the Corcoran household! This Saturday, we will be attending Andrea's Night in Evansville, Indiana. It is a fundraiser for college scholarships and also a portion is donated to The Cholangiocarcinoma Foundation. Andrea Fuquay passed away around 8 years ago from cholangiocarcinoma but her husband is still dedicated to helping fund research for a cure!! Three of my daughters and their spouses, Pat and I, his sister Lisa and her husband John, plus a CC patient on the same trial as me and her husband will all sit at our table. This event is such a fun evening so I am truly looking forward to it. We will also entertain Kathi Wagner representing The Cholangiocarcinoma Foundation who will also be sitting at our table!!
Then, I will travel to Georgia, Mississippi, Houston, Chicago, and then on to Salt Lake City for the Cholangiocarcinoma Foundation Conference. It is a 3 day conference for patients, doctors, researchers, caregivers, and drug companies. It will be the 3rd year that Pat and I have attended and it is always a great educational experience...and like a big group patient family reunion. The conference is such a great opportunity to meet the top doctors and researchers...to meet with people who have traveled this road in one form or another. This conference brings hope to patients as we hear the most up to date information from individuals from all over the world. I would urge anyone affected by CC as a patient or caregiver to try and attend at the end of January. I will also attend some meetings while in Salt Lake City with a couple of drug companies as a patient with my experience on clinical trials. I am honored to represent the Foundation by sharing my knowledge as a patient on my 4th clinical trial.
Cancer has no borders.....no matter your religious belief, your education, your bank statement, your profession.....cancer does not care! Remember that as you meddle through your day to day life. Appreciate the little things....the big things....do not put off telling some one you love them. All you have is today....live it!
After the Conference, Pat and I will go to Las Vegas to visit his son, Tom, for about 5 days. After returning home, it is back to Houston for a scan. Then, we will be on the beaches of Antigua at a Sandal's Resort for a week. This will wrap up and I am hoping March will a bit more calm for our household. I love the "get up and go" lifestyle but this is a bit too much for me!!
I am back to painting more and more. I just finished a cow for a CC patient and plan to get it in the mail to her soon. Next is a painting for the St. Joe Art Auction coming up very soon! Speaking of painting.....I received the most thoughtful gift from an Indiana artist....and signed print from him. I won't mention names but he is VERY well known for his artwork. I am a fan and so touched by his gift!!
We are also cleaning at the Corcoran household. The 3 spare bedrooms that still had a lot of "left behind articles" from 5 girls that have lived in this household, has been removed or thrown away. Some stuff was donated to Goodwill in Vincennes....and some was burned. It sure looks better and after some new paint and having the carpets cleaned, will be ready for some serious grandkid sleepovers!
My daughters and their families are all really busy now in one way or another. Amy/Rylan moved into their new home over Christmas break. Samantha/Chris are busy getting the nursery ready for baby #2. Jenn/Bart just remodeled Zuber Law offices and it is an amazing and welcoming change! Leslie/Rhett hosted Christmas Day at their home in Lawrenceville, IL after adding on an extra family room along with a master suite! Everyone is busy with all kinds of good things happening! My step daughter, Kate is getting ready to move to San Juan with her boyfriend, so we are enjoying her company before she makes the move!
Slow down and truly enjoy the little things in life. Thank God for every minute even when life gives you lemons. He is right beside you....ALWAYS!
God Bless!
Patty
Monday, December 25, 2017
The Holidays
Merry Christmas friends!
I had a scan on December 12th and it shows the trial drug is still working1 There was slight shrinkage in places and stability in others. No growth anywhere on the TAS120 trial. My liver enzymes are well within range except the Alk Phos but it is moving in the right direction.
I am feeling a lot better but I must not look so hot as I see the "Oh My Gosh" looks from people when I am out and about. I truly do feel wonderful right now! I received an iron infusion due to low hemoglobin (anemic) at RMH but so far have not seen a difference in my labs. Dr. Javle states some people need the second one so I might be doing that before January gets REALLY crazy!
I return for blood work and to see the well known CC doctor on January 2, 2018. And then, on January 13, my four daughters, my son in laws, Pat and I, plus another couple will attend the Andrea Remembered Event in Evansville, Indiana. It will be my third time attending this super fun event! This event has raised more than $495,000 for college scholarships for students attending USI in Indiana. The student must have a parent who has passed to be eligible for the scholarship. Andrea Remembered.org also donates money to the Cholangiocarcinoma Foundation-to date over $200,000! Dan Fuquay started this organization after his wife passed from cholangiocarcinoma. What a gift they have provided for students and families affected by cancer.
After we all attend this event, my life gets a little busy for a cancer patient! On January 18, Pat and I drive to Georgia to see Kate's (my step daughter) boyfriend graduate from Homeland Security School. After a few days there, we will drive straight on to Houston for a follow up appointment with Dr. Javle. On January 27, Pat and I will board a train in Effingham that will take us to Chicago. After a 4 1/2 hour layover there, we will board the train for Salt Lake City, Utah for The Cholangiocarcinoma Conference we have attended the last three years. We will be on the train for about 33 hours from Chicago to SLC! I have never ridden a train so I wanted to experience countryside views, quiet relaxation of just the hum of the train rumbling down the track, and maybe the occasional chatter of other passengers on the train. Pat rented a sleeper car plus we are traveling first class. The actual conference in STL starts on Jan. 31 but I am arriving late on the 28th for some training and phone conferences with other CCF staff/volunteers. The Conference ends Feb 2 after many doctors, researchers, drug companies, fellow CC patients hear lots of exciting things in the CC world. After we board a plane in Salt Lake City, we will actually travel to Las Vegas where my stepson, Tom lives. We will visit with him about 5 days before boarding yet another plane to fly home. This leaves us coming home on Feb 7th, only to board a plane again on Feb 11 for a new scan, lab work, and another visit with Dr. Javle. But my life just keeps getting better! Pat and I have consolidated Christmas, my birthday, our anniversary, and Valentines Day into one big gift to each other with a trip! We will drive to Indianapolis to fly out bright and early on Feb.17 to a Sandal's Resort in Antigua. It will be our second visit to a Sandal's Resort and they are just top notch in my book!
We will return from the trip on Feb. 24 only to rest a week before jetting back to Houston for yet another follow up visit. I have visits with Dr. Javle every three weeks since being on the TAS120 trial. But, it is working so there is no room for whining about all the trips to Houston!
I am feeling better now than I have in quite some time. So....if you see me and think I am looking not so hot, it may be due to the fact I am hardly sitting down on this crazy life of mine!! I thank our God many times a day for the memories and good health I am having right now. It truly is a miracle that I am still marching here on this earth. God does answer prayers and no one knows that better than me! So, keep the prayers coming as He truly does hear you!! No one knows how long the ride on this trial will take me but I am not going to sit on my perch at home worrying about it! There is another trial my doctor already has in mind for me IF and when this cancer outsmarts the effectiveness of this trial drug.
Life is short....sometimes coming to an abrupt stop! It is the memories we make with our life that make it the best journey. I am in no way perfect or better than the next person. I ask God WHY I am being blessed with more time than most patients with CC. the answer I get back is......WHY NOT?
None of us know why some of us pass without any warning. And there are many times I think it should have been me instead of a young child or mother. I don't 'get it" because I am far from perfect. It tears at my heart when people have passed way too young from cancer or something else. Every day I wake up, I tell God I am going to try to be a better person....only to lay my head down that night and tell God I am sorry I have failed so miserably...again! But...God already knew I was going to fail.....yet He is still there to listen and guide me daily.
So, I will continue to MARCH in my current life! !! I will be starting my 8th year with this beast of a cancer starting in February!!
With God, my family and friends, I will make many more memories until it is MY TIME!!
God Bless each and every one of you!!
Merry Christmas 2017!
Patty
I had a scan on December 12th and it shows the trial drug is still working1 There was slight shrinkage in places and stability in others. No growth anywhere on the TAS120 trial. My liver enzymes are well within range except the Alk Phos but it is moving in the right direction.
I am feeling a lot better but I must not look so hot as I see the "Oh My Gosh" looks from people when I am out and about. I truly do feel wonderful right now! I received an iron infusion due to low hemoglobin (anemic) at RMH but so far have not seen a difference in my labs. Dr. Javle states some people need the second one so I might be doing that before January gets REALLY crazy!
I return for blood work and to see the well known CC doctor on January 2, 2018. And then, on January 13, my four daughters, my son in laws, Pat and I, plus another couple will attend the Andrea Remembered Event in Evansville, Indiana. It will be my third time attending this super fun event! This event has raised more than $495,000 for college scholarships for students attending USI in Indiana. The student must have a parent who has passed to be eligible for the scholarship. Andrea Remembered.org also donates money to the Cholangiocarcinoma Foundation-to date over $200,000! Dan Fuquay started this organization after his wife passed from cholangiocarcinoma. What a gift they have provided for students and families affected by cancer.
After we all attend this event, my life gets a little busy for a cancer patient! On January 18, Pat and I drive to Georgia to see Kate's (my step daughter) boyfriend graduate from Homeland Security School. After a few days there, we will drive straight on to Houston for a follow up appointment with Dr. Javle. On January 27, Pat and I will board a train in Effingham that will take us to Chicago. After a 4 1/2 hour layover there, we will board the train for Salt Lake City, Utah for The Cholangiocarcinoma Conference we have attended the last three years. We will be on the train for about 33 hours from Chicago to SLC! I have never ridden a train so I wanted to experience countryside views, quiet relaxation of just the hum of the train rumbling down the track, and maybe the occasional chatter of other passengers on the train. Pat rented a sleeper car plus we are traveling first class. The actual conference in STL starts on Jan. 31 but I am arriving late on the 28th for some training and phone conferences with other CCF staff/volunteers. The Conference ends Feb 2 after many doctors, researchers, drug companies, fellow CC patients hear lots of exciting things in the CC world. After we board a plane in Salt Lake City, we will actually travel to Las Vegas where my stepson, Tom lives. We will visit with him about 5 days before boarding yet another plane to fly home. This leaves us coming home on Feb 7th, only to board a plane again on Feb 11 for a new scan, lab work, and another visit with Dr. Javle. But my life just keeps getting better! Pat and I have consolidated Christmas, my birthday, our anniversary, and Valentines Day into one big gift to each other with a trip! We will drive to Indianapolis to fly out bright and early on Feb.17 to a Sandal's Resort in Antigua. It will be our second visit to a Sandal's Resort and they are just top notch in my book!
We will return from the trip on Feb. 24 only to rest a week before jetting back to Houston for yet another follow up visit. I have visits with Dr. Javle every three weeks since being on the TAS120 trial. But, it is working so there is no room for whining about all the trips to Houston!
I am feeling better now than I have in quite some time. So....if you see me and think I am looking not so hot, it may be due to the fact I am hardly sitting down on this crazy life of mine!! I thank our God many times a day for the memories and good health I am having right now. It truly is a miracle that I am still marching here on this earth. God does answer prayers and no one knows that better than me! So, keep the prayers coming as He truly does hear you!! No one knows how long the ride on this trial will take me but I am not going to sit on my perch at home worrying about it! There is another trial my doctor already has in mind for me IF and when this cancer outsmarts the effectiveness of this trial drug.
Life is short....sometimes coming to an abrupt stop! It is the memories we make with our life that make it the best journey. I am in no way perfect or better than the next person. I ask God WHY I am being blessed with more time than most patients with CC. the answer I get back is......WHY NOT?
None of us know why some of us pass without any warning. And there are many times I think it should have been me instead of a young child or mother. I don't 'get it" because I am far from perfect. It tears at my heart when people have passed way too young from cancer or something else. Every day I wake up, I tell God I am going to try to be a better person....only to lay my head down that night and tell God I am sorry I have failed so miserably...again! But...God already knew I was going to fail.....yet He is still there to listen and guide me daily.
So, I will continue to MARCH in my current life! !! I will be starting my 8th year with this beast of a cancer starting in February!!
With God, my family and friends, I will make many more memories until it is MY TIME!!
God Bless each and every one of you!!
Merry Christmas 2017!
Patty
Friday, November 3, 2017
What Is Going On!!
Although it is November 2, I am going to go back when everything started changing. I had a scan the first week of August, and it showed more growth than stability on the INCB054828 trial. At this point, Dr. Meric-Berstam and I decided it was time to exit that trial. The side effects had gotten worse, and the negatives were definitely starting to outweigh the positives. I was also running a low grade fever for about a week when all of the above happened, and after consulting with Dr. Javle, we agreed it was best to wait until the fever stopped before starting a new trial.
Life seemed to drag by each day, and as each day passed, my worry and anxiety was growing like a snowball being rolled downhill. I was off of any therapy to stop my cancer from growing, and I was beginning to feel alone and depressed. There were days I didn't shower for three days as I really thought I was dying, so why care about my appearances. I barely left the house. This is the first time I let depression get the best of me. Throughout the past (almost 7 years), I have never felt so alone and I just felt like it was "my time." I wasn't eating a lot, and I was starting to lose weight.
Throughout August and into September, the daily fevers never went away. I saw my local doctor, and after removing my port to eliminate it as a source of infection, I had an appointment with an infection disease doctor. He quickly determined there was nothing else to blame. The fevers were tumor fevers.
About the second week of September, Dr. Javle and I agreed it was time to get me on a new targeted therapy clinical trial for the FGFR mutation. This is my third FGFR trial.....and I needed a miracle to stop the cancer growing inside my body. On September 19, my daughter, Jennifer, and I traveled to Houston to start the TAS 120 trial at MD Anderson Cancer Center. Scans confirmed my cancer was doing a happy dance inside of me. I was not surprised it was growing. Testing to make sure I was eligible for the trial moved fast and swift....we didn't waste any time and I was approved within days. We were even able to visit the cholangiocarcinoma lab (along with several board members from The Cholangiocarcinoma Foundation) at MD Anderson and were honored to meet the lead researcher, Dr. Larry Kwong.
I started taking the drug for the TAS 120 trial on September 21, 2017. On September 24, my fevers were gone. Pat returned home from his hunting trip a few days later, and he was adamant that the trial was working, as I was a totally new person. Soon after, I was going for walks. I was having lunch with friends. I started watching grandchildren again. I went to the Covered Bridge Festival for the day.
After six weeks on the trial, I am back to painting and considering a fourth children's book. I am feeling like the old me and not worrying about when I am going to die. I am LIVING AGAIN!!
This trial has a lot fewer side effects and I am doing so well!! Drum roll please!! After just six weeks on the TAS 120, my scan on October 30 shows that overall I had 40% reduction in the overall size of the cancer! This news was the best news in about a year for me. My doctor stated I have had the best response of all of his patients on this trial. There were two other patients on this trial that had a scan the same day as me. We all had great responses! Dr. Javle had mentioned the TAS 120 a few times over the past several months while I was on the INCB trial. He stated we had a backup plan, and he really thought it would be a good fit for me when the time came. I am so glad he has always had a plan at just the right time. You see....this is the type of doctor I want in my corner. One who is always three steps ahead of me when it comes to my health and what will keep me alive with the best quality of life.
So, I WILL MARCH!
Over the past 7 years, I have thanked God so very many times for the life I have had since being diagnosed with this dreaded cancer. When I lay my head down each night, as I pray and thank God for all the memories that I have made with family and friends. I am so truly blessed with my family here in Illinois and the family I hold dear to my heart in Houston. When I was diagnosed, my outlook was not good. Not good at all, BUT I have never lost my faith. I know God is still right beside me every single day.
I am living every single day! My health and my mind are as good as it can be right now! I have lost about 15 pounds and am keeping my weight stable. I am eating normal again because I feel normal again! I am thinking about joining a gym again to get daily exercise. I went outside with Pat this morning and we walked 1 1/4 miles....it's a start!!
I appreciate all the people who have called or emailed me because I went so long in between this post and my last post back in July. People who called just to check on me are so appreciated in a cancer patient's life!!.
Be patient with me to post again, as I am too busy trying to stay alive and living each day to its fullest!! I promise it won't be another 3 months!!
Hugs!!
Patty
Life seemed to drag by each day, and as each day passed, my worry and anxiety was growing like a snowball being rolled downhill. I was off of any therapy to stop my cancer from growing, and I was beginning to feel alone and depressed. There were days I didn't shower for three days as I really thought I was dying, so why care about my appearances. I barely left the house. This is the first time I let depression get the best of me. Throughout the past (almost 7 years), I have never felt so alone and I just felt like it was "my time." I wasn't eating a lot, and I was starting to lose weight.
Throughout August and into September, the daily fevers never went away. I saw my local doctor, and after removing my port to eliminate it as a source of infection, I had an appointment with an infection disease doctor. He quickly determined there was nothing else to blame. The fevers were tumor fevers.
About the second week of September, Dr. Javle and I agreed it was time to get me on a new targeted therapy clinical trial for the FGFR mutation. This is my third FGFR trial.....and I needed a miracle to stop the cancer growing inside my body. On September 19, my daughter, Jennifer, and I traveled to Houston to start the TAS 120 trial at MD Anderson Cancer Center. Scans confirmed my cancer was doing a happy dance inside of me. I was not surprised it was growing. Testing to make sure I was eligible for the trial moved fast and swift....we didn't waste any time and I was approved within days. We were even able to visit the cholangiocarcinoma lab (along with several board members from The Cholangiocarcinoma Foundation) at MD Anderson and were honored to meet the lead researcher, Dr. Larry Kwong.
I started taking the drug for the TAS 120 trial on September 21, 2017. On September 24, my fevers were gone. Pat returned home from his hunting trip a few days later, and he was adamant that the trial was working, as I was a totally new person. Soon after, I was going for walks. I was having lunch with friends. I started watching grandchildren again. I went to the Covered Bridge Festival for the day.
After six weeks on the trial, I am back to painting and considering a fourth children's book. I am feeling like the old me and not worrying about when I am going to die. I am LIVING AGAIN!!
This trial has a lot fewer side effects and I am doing so well!! Drum roll please!! After just six weeks on the TAS 120, my scan on October 30 shows that overall I had 40% reduction in the overall size of the cancer! This news was the best news in about a year for me. My doctor stated I have had the best response of all of his patients on this trial. There were two other patients on this trial that had a scan the same day as me. We all had great responses! Dr. Javle had mentioned the TAS 120 a few times over the past several months while I was on the INCB trial. He stated we had a backup plan, and he really thought it would be a good fit for me when the time came. I am so glad he has always had a plan at just the right time. You see....this is the type of doctor I want in my corner. One who is always three steps ahead of me when it comes to my health and what will keep me alive with the best quality of life.
So, I WILL MARCH!
Over the past 7 years, I have thanked God so very many times for the life I have had since being diagnosed with this dreaded cancer. When I lay my head down each night, as I pray and thank God for all the memories that I have made with family and friends. I am so truly blessed with my family here in Illinois and the family I hold dear to my heart in Houston. When I was diagnosed, my outlook was not good. Not good at all, BUT I have never lost my faith. I know God is still right beside me every single day.
I am living every single day! My health and my mind are as good as it can be right now! I have lost about 15 pounds and am keeping my weight stable. I am eating normal again because I feel normal again! I am thinking about joining a gym again to get daily exercise. I went outside with Pat this morning and we walked 1 1/4 miles....it's a start!!
I appreciate all the people who have called or emailed me because I went so long in between this post and my last post back in July. People who called just to check on me are so appreciated in a cancer patient's life!!.
Be patient with me to post again, as I am too busy trying to stay alive and living each day to its fullest!! I promise it won't be another 3 months!!
Hugs!!
Patty
Sunday, July 2, 2017
Thankful No Matter What Happens!
I returned from Houston on Wednesday after a scan, blood work, and a visit with Dr. Meric-Bernstam. I am pleased so say that I am still mostly stable with only a small amount of growth. The QIAC Report-which is part of the clinical trial report after a scan showing measurements of each growth and shrinkage on places. Then it is all added together, divided, and the report gives you the percentage of growth or shrinkage overall). I had 2% shrinkage overall and sometimes it's the small things you have to appreciate in life. Especially in the cancer world!
Our return home was quite the experience as we were suppose to fly out Tuesday evening with a layover in Dallas before arriving in St. Louis. Our flight from Hobby Airport in Houston was to depart at 6:30, but the departing plane was 45 minutes late before arriving at the gate. After boarding, the pilot informed us we would need to fly down to San Antonio before our stop in Dallas/Ft. Worth due to weather. This meant additional time and we are already running late. So, as we arrived in Dallas/F.W., (about 4 people needing to catch the flight to St. Louis), we promptly ran to the gate and the plane we were to be on was already leaving. This was about 8:30 p.m. and I pretty much knew we were there for the night! And...we were! Since our delays were weather related, Southwest said it was not their fault but gave us a list of discounted hotels. I was tired, hungry, and ready to punch someone in the face. But, I remembered praying to God that morning that I knew we were coming in to St. Louis later than normal and wouldn't get home until 1 a.m. or so...and that if he could please direct us home safely, I would be so thankful. So, maybe he knew Pat needed rest and this was His way of getting us home safely...in His time, not ours!! God has given me one of the best husbands a person could ask for. Pat is always beside me no matter what. There to go grab supper, get meds, check on me when I feel sicker than usual, ask the doctors all the right questions. I am blessed with one great man as my husband!!
I am having several side effects from the trial drug such as very dry eyes which was attended to by the opthomologist at MD Anderson. The doctor states my vision is slightly worse but not enough to have my glasses updated. He also approved the eye drops and nighttime eye ointment that my local Pharmacist Brycen Short helped me choose. I knew they needed to be preservative free but there are several that have alcohol in them...which dry the eyes! I also had a sonogram of the eyes to make sure I had no fluid buildup behind the eyes which is somewhat common on this trial drug. No fluid! I also have dry skin, dry corners of my mouth, toenails that are cut back halfway as they are lifting from the bed-not to mention three that totally fell off. My fingernails have not fallen off but they don't look the best either. My feet are dry as are the tips of my fingers. My nose is very dry on the inside so I have the humidifier by my bed for bedtime. The inside of my mouth gets so dry at times that I might wake up in the middle of the night and my tongue is stuck to the roof of my mouth. I literally have to sneak my finger on top of my tongue the carefully pry it off, then gulp some water with my eyes half shut. Yip, these are just a few of the side effects of the INCB 054838-101 trial.
My labs look pretty good and were not a worry with Dr. Meric-Bernstam. My CA 19-9 is within range at 26.5. My liver enzymes are AST 34, ALT 49, and the Alk Phos was 308. The ALT and AST are within normal range but the Alk Phos is somewhat high. People with cholangio know what this all means or maybe a dr or nurse...so I am putting this out there for them more than anyone else. WBC is within range at 4.7 but platelets are dipping in the low range just barely at 127,000. My platelets fluctuate quite frequently so not too worrisome at this point. Phosphorus is 2.5 (for those on my trial this is especially informative). I am somewhat nauseous lately and I have lost about 5 pounds because of it. So, I have started drinking protein shakes with banana and peanut butter in them to halt the weight loss. I have to remind myself, anytime I have a scan means several hours without eating...and after a scan, I am usually nauseous due to the contrast I drink. Thus, causing some weight loss that I can usually make up within a weeks time.
So, after arriving home Wednesday afternoon, I felt good until Thursday about noon. I just had no energy. Friday came and I just didn't feel so hot. I finally checked my temperature at 4 p.m. and I had a 100.8 fever which came down with 400mg of Ibuprophen. Saturday was no better with a slight belly ache and just no energy. At 3 pm, I took my temp and it was already at 99.9. Not an alarming fever but when you have cancer, every little thing is of concern. Today, I felt pretty good and actually picked up the house, cleaned the bathroom, mopped the kitchen, cleaned off the counter tops, and vacuumed some areas. I still have not been outside since Thursday afternoon....maybe tomorrow.
Whether I caught a bug at MD Anderson or in the airport, that's what I am chalking it up as. It's not quite 4 and if the fever starts again, I might call my local doctor tomorrow.
When I come down with these small bugs or whatever they might be, it scares me. It makes me wonder that even though the doctors think I am doing alright, is this the beginning of the end. I HAVE lived longer than what most people can even dream with CC. And, I am blessed. I do not know the plans God has for me, but He is right beside me every single day. I am thankful...so very thankful.
Before leaving for Houston, my sister-in-law Sheila Stoltz, my cousin Amelia Lydle and I took a girls trip to Siesta Keys, Florida for a week. The beach always make things better...or atleast for the week. I enjoyed good company, good food, good spirits-kidding, and a little shopping. Our weather was spot on even though there was the tropical storm Cindy lurking in other parts of Florida and Gulf Shores. The day we flew home, there was a BIG whale that washed up on shore. I didn't see it but I sure hope it was back in the water with help from shore patrol & rescue. I am thankful I was able to go on this trip, and it makes me realize I still have a lot of living to do. Pat and I have no plans for a trip anytime soon...except those trips to good old Houston! But, I truly believe I wouldn't be alive without my doctors at MD Anderson and most of all, God!
An update on the CURE article! Pictures have been taken, the article has been approved by all parties involved, and the magazine about cholangiocarcinoma and an interview with a couple of doctors (none being mine which is a little disappointing) and myself are complete. The magazine with this article will be in a SPECIAL EDITION of CURE magazine that will come out in Mid-August. You will be able to read it online or try getting your hands on a magazine somewhere. I have about 10 magazines come my way for family from the staff at CURE. I know the photographer took well over 200 photos of me at my home, and although I approved the article, I have no idea what the finished product will look like. Maybe I can add the link to the article once it is out here on my blog. I was disappointed I couldn't mention my doctors or have a family photo. Nope, it's all about the patient and making people aware of the rare cancer and its symptoms!
Have a GREAT July 4th!! Be safe!
Hugs,
Patty
Our return home was quite the experience as we were suppose to fly out Tuesday evening with a layover in Dallas before arriving in St. Louis. Our flight from Hobby Airport in Houston was to depart at 6:30, but the departing plane was 45 minutes late before arriving at the gate. After boarding, the pilot informed us we would need to fly down to San Antonio before our stop in Dallas/Ft. Worth due to weather. This meant additional time and we are already running late. So, as we arrived in Dallas/F.W., (about 4 people needing to catch the flight to St. Louis), we promptly ran to the gate and the plane we were to be on was already leaving. This was about 8:30 p.m. and I pretty much knew we were there for the night! And...we were! Since our delays were weather related, Southwest said it was not their fault but gave us a list of discounted hotels. I was tired, hungry, and ready to punch someone in the face. But, I remembered praying to God that morning that I knew we were coming in to St. Louis later than normal and wouldn't get home until 1 a.m. or so...and that if he could please direct us home safely, I would be so thankful. So, maybe he knew Pat needed rest and this was His way of getting us home safely...in His time, not ours!! God has given me one of the best husbands a person could ask for. Pat is always beside me no matter what. There to go grab supper, get meds, check on me when I feel sicker than usual, ask the doctors all the right questions. I am blessed with one great man as my husband!!
I am having several side effects from the trial drug such as very dry eyes which was attended to by the opthomologist at MD Anderson. The doctor states my vision is slightly worse but not enough to have my glasses updated. He also approved the eye drops and nighttime eye ointment that my local Pharmacist Brycen Short helped me choose. I knew they needed to be preservative free but there are several that have alcohol in them...which dry the eyes! I also had a sonogram of the eyes to make sure I had no fluid buildup behind the eyes which is somewhat common on this trial drug. No fluid! I also have dry skin, dry corners of my mouth, toenails that are cut back halfway as they are lifting from the bed-not to mention three that totally fell off. My fingernails have not fallen off but they don't look the best either. My feet are dry as are the tips of my fingers. My nose is very dry on the inside so I have the humidifier by my bed for bedtime. The inside of my mouth gets so dry at times that I might wake up in the middle of the night and my tongue is stuck to the roof of my mouth. I literally have to sneak my finger on top of my tongue the carefully pry it off, then gulp some water with my eyes half shut. Yip, these are just a few of the side effects of the INCB 054838-101 trial.
My labs look pretty good and were not a worry with Dr. Meric-Bernstam. My CA 19-9 is within range at 26.5. My liver enzymes are AST 34, ALT 49, and the Alk Phos was 308. The ALT and AST are within normal range but the Alk Phos is somewhat high. People with cholangio know what this all means or maybe a dr or nurse...so I am putting this out there for them more than anyone else. WBC is within range at 4.7 but platelets are dipping in the low range just barely at 127,000. My platelets fluctuate quite frequently so not too worrisome at this point. Phosphorus is 2.5 (for those on my trial this is especially informative). I am somewhat nauseous lately and I have lost about 5 pounds because of it. So, I have started drinking protein shakes with banana and peanut butter in them to halt the weight loss. I have to remind myself, anytime I have a scan means several hours without eating...and after a scan, I am usually nauseous due to the contrast I drink. Thus, causing some weight loss that I can usually make up within a weeks time.
So, after arriving home Wednesday afternoon, I felt good until Thursday about noon. I just had no energy. Friday came and I just didn't feel so hot. I finally checked my temperature at 4 p.m. and I had a 100.8 fever which came down with 400mg of Ibuprophen. Saturday was no better with a slight belly ache and just no energy. At 3 pm, I took my temp and it was already at 99.9. Not an alarming fever but when you have cancer, every little thing is of concern. Today, I felt pretty good and actually picked up the house, cleaned the bathroom, mopped the kitchen, cleaned off the counter tops, and vacuumed some areas. I still have not been outside since Thursday afternoon....maybe tomorrow.
Whether I caught a bug at MD Anderson or in the airport, that's what I am chalking it up as. It's not quite 4 and if the fever starts again, I might call my local doctor tomorrow.
When I come down with these small bugs or whatever they might be, it scares me. It makes me wonder that even though the doctors think I am doing alright, is this the beginning of the end. I HAVE lived longer than what most people can even dream with CC. And, I am blessed. I do not know the plans God has for me, but He is right beside me every single day. I am thankful...so very thankful.
Before leaving for Houston, my sister-in-law Sheila Stoltz, my cousin Amelia Lydle and I took a girls trip to Siesta Keys, Florida for a week. The beach always make things better...or atleast for the week. I enjoyed good company, good food, good spirits-kidding, and a little shopping. Our weather was spot on even though there was the tropical storm Cindy lurking in other parts of Florida and Gulf Shores. The day we flew home, there was a BIG whale that washed up on shore. I didn't see it but I sure hope it was back in the water with help from shore patrol & rescue. I am thankful I was able to go on this trip, and it makes me realize I still have a lot of living to do. Pat and I have no plans for a trip anytime soon...except those trips to good old Houston! But, I truly believe I wouldn't be alive without my doctors at MD Anderson and most of all, God!
An update on the CURE article! Pictures have been taken, the article has been approved by all parties involved, and the magazine about cholangiocarcinoma and an interview with a couple of doctors (none being mine which is a little disappointing) and myself are complete. The magazine with this article will be in a SPECIAL EDITION of CURE magazine that will come out in Mid-August. You will be able to read it online or try getting your hands on a magazine somewhere. I have about 10 magazines come my way for family from the staff at CURE. I know the photographer took well over 200 photos of me at my home, and although I approved the article, I have no idea what the finished product will look like. Maybe I can add the link to the article once it is out here on my blog. I was disappointed I couldn't mention my doctors or have a family photo. Nope, it's all about the patient and making people aware of the rare cancer and its symptoms!
Have a GREAT July 4th!! Be safe!
Hugs,
Patty
Tuesday, June 13, 2017
What's new?
It has been two months since my last post.....and I am ok...still marching in this fight against cancer! I have been so very busy traveling back and forth to Houston every three weeks for dr visits and scans on the INCB 054828 trial. I am on Cycle 8 of this targeted therapy trial for the FGFR2 gene mutation.
I want to thank all the people who messaged me or e-mailed me to see how I was doing since I seem to have a hard time updating lately. I am just so busy living....I can't hardly apologize when I am just having too much fun living life!!
I wanted to mention some of the side effects from my trial. My fingernails are "lifting" and my toenails are ready to fall off (actually two already have). This is a side effect for this trial drug and also the BGJ398 trial that I was on a while back. My left eye is somewhat blurry which is also a common side effect not to mention dry skin, dry eyes, dry mouth....you get the picture. I also have mouth sores by the time I start week two on the trial drug. My mouth gets super sensitive to spices, acid based foods or fruits, anything acidic. I cannot use toothpaste by week two on the trial drug...so I use baking soda for that second week. I also have a mouth swish and swallow drink to use to help keep your mouth healthy. It's all manageable to a certain extent besides food starts to not have much taste. I just go through the motions and eat so I stay at a healthy weight. I will have a vision appointment at my next visit to MD Anderson to see how bad this drug has effected my eyes. Hopefully they will not kick me out of the trial as long as it is not at a stage 3, which is like a high alert and might result in calling the drug company to see if they will let me stay in the trial. We'll cross that bridge when we get there!!
I will also have a scan on my next visit on June 26th & 27th. I don't have any idea what the scan will show. In the past, my scan results have been mixed and have been for several scans. There has been slight growth (a few millimeters) and also some shrinkage so it is putting the breaks on my cancer. Although I have great trial doctors that I see at each visit, they just are not the same as Dr. Milind Javle. He has been a compass for me on this journey with his knowledge and caring attitude. I truly do not believe I would be alive without his expertise on cholangiocarcinoma. He is the best in the U.S according to many people including me.
Before my next visit to Houston, I will be going to Siesta Keys, Florida with my sister-in-law Sheila Stoltz and my cousin Amelia Lydle for a week vacation. I am sure there will be relaxation, eating, reading, and walking on the beach most days.
There have been even more friends who had cholangiocarcinoma that have passed recently. One in particular was diagnosed the same month and same year as me. It really hit home for me and scares the hair off of your head! OK....just my head!! Each friends who passes from this dreadful cancer is a true warrior and I just want to put my head in the sand like it never even happened.....but I know I have to face it and try to stay as positive minded as I can for my own health. It's just hard every single time and it never gets easier.
I have also been in contact with CURE magazine that is all about cancer, research, articles about rare cancers and not so rare cancers. They contacted me and wanted to do an article on cholangiocarcinoma and a patient with CC. I agreed and the lady writing the article actually read my blog over a weekend and could pretty much write the article with everything she acquired from the blog. She did interview me over the phone also. Tonight, (June 13th) I had a photographer from Effingham come to my house to get a few pictures taken for Cure magazine and the article that will be published sometime in the near future. Most people have not heard of CURE magazine unless you have had to deal with cancer or a family member has. I have been receiving it for several years and after reading the magazine several times, I usually mail them to cancer patients because many of the articles are a wealth of information. I have always loved their magazine and was honored when they wanted to include me in a piece on cholangiocarcinoma. I will update when the article is actually available or I have a few copies.
So....as you can see, I truly have been busy. My step daughter Kate just left today after flying in to visit for several days. She brought her boyfriend and it truly was a nice visit and long overdue. We spent time with her sisters and all the nieces and nephews. Joe's Pizza was one of the first foods Kate wanted from 'home' so Joe's it was!! Pat and I hope to get out to visit Kate and see Massachusetts and Connecticut by the end of summer. It's just a wait and see game to decide when Pat and I actually do have time to travel somewhere besides Houston, Texas. BUT, as long as I am still going, I AM ALIVE!!
That's it for now folks!! Stay tuned!!
My daughter Leslie came over before my CURE photo shoot to do my makeup. She did a great job and I am so thankful my daughters are always there for me!! Leslie took this picture of me but it looks pretty good to me!!
Hugs!!
Patty Corcoran
I want to thank all the people who messaged me or e-mailed me to see how I was doing since I seem to have a hard time updating lately. I am just so busy living....I can't hardly apologize when I am just having too much fun living life!!
I wanted to mention some of the side effects from my trial. My fingernails are "lifting" and my toenails are ready to fall off (actually two already have). This is a side effect for this trial drug and also the BGJ398 trial that I was on a while back. My left eye is somewhat blurry which is also a common side effect not to mention dry skin, dry eyes, dry mouth....you get the picture. I also have mouth sores by the time I start week two on the trial drug. My mouth gets super sensitive to spices, acid based foods or fruits, anything acidic. I cannot use toothpaste by week two on the trial drug...so I use baking soda for that second week. I also have a mouth swish and swallow drink to use to help keep your mouth healthy. It's all manageable to a certain extent besides food starts to not have much taste. I just go through the motions and eat so I stay at a healthy weight. I will have a vision appointment at my next visit to MD Anderson to see how bad this drug has effected my eyes. Hopefully they will not kick me out of the trial as long as it is not at a stage 3, which is like a high alert and might result in calling the drug company to see if they will let me stay in the trial. We'll cross that bridge when we get there!!
I will also have a scan on my next visit on June 26th & 27th. I don't have any idea what the scan will show. In the past, my scan results have been mixed and have been for several scans. There has been slight growth (a few millimeters) and also some shrinkage so it is putting the breaks on my cancer. Although I have great trial doctors that I see at each visit, they just are not the same as Dr. Milind Javle. He has been a compass for me on this journey with his knowledge and caring attitude. I truly do not believe I would be alive without his expertise on cholangiocarcinoma. He is the best in the U.S according to many people including me.
Before my next visit to Houston, I will be going to Siesta Keys, Florida with my sister-in-law Sheila Stoltz and my cousin Amelia Lydle for a week vacation. I am sure there will be relaxation, eating, reading, and walking on the beach most days.
There have been even more friends who had cholangiocarcinoma that have passed recently. One in particular was diagnosed the same month and same year as me. It really hit home for me and scares the hair off of your head! OK....just my head!! Each friends who passes from this dreadful cancer is a true warrior and I just want to put my head in the sand like it never even happened.....but I know I have to face it and try to stay as positive minded as I can for my own health. It's just hard every single time and it never gets easier.
I have also been in contact with CURE magazine that is all about cancer, research, articles about rare cancers and not so rare cancers. They contacted me and wanted to do an article on cholangiocarcinoma and a patient with CC. I agreed and the lady writing the article actually read my blog over a weekend and could pretty much write the article with everything she acquired from the blog. She did interview me over the phone also. Tonight, (June 13th) I had a photographer from Effingham come to my house to get a few pictures taken for Cure magazine and the article that will be published sometime in the near future. Most people have not heard of CURE magazine unless you have had to deal with cancer or a family member has. I have been receiving it for several years and after reading the magazine several times, I usually mail them to cancer patients because many of the articles are a wealth of information. I have always loved their magazine and was honored when they wanted to include me in a piece on cholangiocarcinoma. I will update when the article is actually available or I have a few copies.
So....as you can see, I truly have been busy. My step daughter Kate just left today after flying in to visit for several days. She brought her boyfriend and it truly was a nice visit and long overdue. We spent time with her sisters and all the nieces and nephews. Joe's Pizza was one of the first foods Kate wanted from 'home' so Joe's it was!! Pat and I hope to get out to visit Kate and see Massachusetts and Connecticut by the end of summer. It's just a wait and see game to decide when Pat and I actually do have time to travel somewhere besides Houston, Texas. BUT, as long as I am still going, I AM ALIVE!!
That's it for now folks!! Stay tuned!!
My daughter Leslie came over before my CURE photo shoot to do my makeup. She did a great job and I am so thankful my daughters are always there for me!! Leslie took this picture of me but it looks pretty good to me!!
Hugs!!
Patty Corcoran
Monday, April 10, 2017
SO much to be thankful for!
Greetings! I just started cycle 5 of INCB054828. I had a scan last week in Houston at MD Anderson. I had results of the scan and bloodwork on Friday, April 6th. My scan shows shrinkage in some areas and slight growth in other areas. Although Dr. Subbiah states it is stable disease, I am just not feeling so sure about it. But I do believe it is slowing the cancer cells down a lot. The places that had growth were just a few mm, so I feel it is better to have smoldering cancer rather than an all out forest fire. I am uneasy that there is ANY growth but sometimes you have to pick your battles. I will scan in a few more cycles and if there is still growth, I will go off of the trial and back to the drawing boards with Dr. Javle. I mean, I have had pretty much all chemo cocktails and three separate trials.....I have had three separate rounds with IMRT radiation.
On a positive note, the PA that we saw before seeing Dr. Subbiah said my bloodwork was so good it should be pinned up on the fridge for everyone to see! It doesn't mean I can sit back and relax....no, there is no resting for a cancer patient! I will march~~
I have lived, I have loved, and I will keep marching for every single day on this earth. Days where I pick up grandchildren and spend the day together....we play in the creek and make bubble art on canvas for their walls at home....and lots of trips to get an ice cream cone. I am so very thankful for every single day....more so when you have cancer. Ask any cancer survivor and they will back me up when I say you never start living until you are touched with cancer. It is like opening up the curtains in the morning. You have a choice whether you see sunshine and are ready to start the day strong OR you can open the curtain to a day filled with clouds and crawl back in bed. There is No day on my schedule of life for 'cloudy days'!
I will march, I will march, and I will MARCH some more!!!
Since coming back from the Cholangiocarcinoma Conference the first week of February, there have been several cholangiocarcinoma patients who have passed. Young men and women....and some who are older. It just scares the ants out of your pants!!!! I pray for their families, friends, and for all cancer patients. You just never know when it might be 'your turn' AND it sure makes you thank God for every single day FULL of sunshine!!
As I sat waiting for a blood draw in the research lab this past week at MD Anderson, a lady who had been sitting across from me a bit, said "Patty?" I kind of sat there and wondered if she was truly talking to me. I spoke up finally and said "Yes?" It was a lady from Alabama and her husband has CC. He was there getting a blood draw also. I messaged back and forth with her in the past as her husband is on Lovenox like me and I wanted to make sure she knew to get his blood checked for consistency so there was no cerebral hemhorrage like I had. It is always comforting to have a network of cholangiocarcinoma friends out there. Pat and I also had supper with Cathy & Paul Dalton while in Houston. We met Cathy a couple of years ago in Houston and she is a CC patient. Cathy is a great gal who also has her big girl pants on fighting like a girl!!
I am feeling about 90% ok. I was at RMH with a red sore place on my lower leg on about April 2. It was hot to the touch and I had been running a fever the weekend before going to have it looked at. Never a high fever but 100.7 or less. I was told I had cellulitis and was put on an antibiotic for 10 days. My leg is all better and I am so glad I had it looked at. It is one of those things that just doesn't go away on its own. I am so happy that I had it looked at BEFORE going to Houston or it would have really turned into something ugly!!
I will share a quick story before logging off. I hear people stating that early screening and detection is KEY to catching cancer early. Well...let me tell you something. I was all about my yearly mammo's and pap smears. I wanted a sticker to wear on that yearly date....just like an I VOTED sticker! It wasn't until I was at Mayo Clinic that they looked at my last two yearly blood results that Dr. Kristen Mahan ordered. My liver enzymes were elevated for two whole years and I was never alerted that it was high. It was never huge out of range but enough that something should have been done. So, the Mayo dr's knew I probably had CC for atleast two years if not three before diagnosis. I had been to heart drs, did stress tests, many EKG's, and everything kept coming back ok. I was more active than the average 'Joe' with going to the gym atleast 5 days a week not to mention my long bike rides, walking, 5K's, and even playing volleyball weekly. There might have been times I had a slight ache in my back but I always attributed it to exercising and maybe pulling a muscle.
IF you have/had cancer, IF you catch it early, you are one lucky person to find it early.....but there are some people who truly tried to live healthy and just got struck with the big C word anyway....and way too late. You can bet your bottom dollar that I get a copy of my blood results each and every time I have a blood draw. Dr. Subbiah stated to me back in January for me to not worry about my bloodwork as it can fluctuate so much AND it was his job to keep an eye on my labs.... but I beg your pardon!! Maybe if I would have been wiser or more adamant to get my results 7 years ago, I wouldn't be fighting this beast STILL. But, we can only look forward and to see many more sunny days and making memories in my lifetime!
In closing, enjoy this Season of LIFE. The real meaning of Easter....what does it mean to you? To me? It's knowing that Easter is the oldest Christian holiday and the most important day of the church year. Easter celebrates and commemorates the central event of the Christian faith: the resurrection of Jesus Christ three days after his death. As I sit here letting this run through my mind, I am always thankful and amazed at just how AMAZING our God truly is.
Yes, there will be colored eggs sprawled about as my family gathers to celebrate at the "Cummins-Zuber Ranch" but we will also take a minute to give thanks to our Almighty God and to celebrate each and every day on this earth.
God bless you all who read my blog! Celebrate LIFE every day!!
God bless~~
Patty Corcoran
On a positive note, the PA that we saw before seeing Dr. Subbiah said my bloodwork was so good it should be pinned up on the fridge for everyone to see! It doesn't mean I can sit back and relax....no, there is no resting for a cancer patient! I will march~~
I have lived, I have loved, and I will keep marching for every single day on this earth. Days where I pick up grandchildren and spend the day together....we play in the creek and make bubble art on canvas for their walls at home....and lots of trips to get an ice cream cone. I am so very thankful for every single day....more so when you have cancer. Ask any cancer survivor and they will back me up when I say you never start living until you are touched with cancer. It is like opening up the curtains in the morning. You have a choice whether you see sunshine and are ready to start the day strong OR you can open the curtain to a day filled with clouds and crawl back in bed. There is No day on my schedule of life for 'cloudy days'!
I will march, I will march, and I will MARCH some more!!!
Since coming back from the Cholangiocarcinoma Conference the first week of February, there have been several cholangiocarcinoma patients who have passed. Young men and women....and some who are older. It just scares the ants out of your pants!!!! I pray for their families, friends, and for all cancer patients. You just never know when it might be 'your turn' AND it sure makes you thank God for every single day FULL of sunshine!!
As I sat waiting for a blood draw in the research lab this past week at MD Anderson, a lady who had been sitting across from me a bit, said "Patty?" I kind of sat there and wondered if she was truly talking to me. I spoke up finally and said "Yes?" It was a lady from Alabama and her husband has CC. He was there getting a blood draw also. I messaged back and forth with her in the past as her husband is on Lovenox like me and I wanted to make sure she knew to get his blood checked for consistency so there was no cerebral hemhorrage like I had. It is always comforting to have a network of cholangiocarcinoma friends out there. Pat and I also had supper with Cathy & Paul Dalton while in Houston. We met Cathy a couple of years ago in Houston and she is a CC patient. Cathy is a great gal who also has her big girl pants on fighting like a girl!!
I am feeling about 90% ok. I was at RMH with a red sore place on my lower leg on about April 2. It was hot to the touch and I had been running a fever the weekend before going to have it looked at. Never a high fever but 100.7 or less. I was told I had cellulitis and was put on an antibiotic for 10 days. My leg is all better and I am so glad I had it looked at. It is one of those things that just doesn't go away on its own. I am so happy that I had it looked at BEFORE going to Houston or it would have really turned into something ugly!!
I will share a quick story before logging off. I hear people stating that early screening and detection is KEY to catching cancer early. Well...let me tell you something. I was all about my yearly mammo's and pap smears. I wanted a sticker to wear on that yearly date....just like an I VOTED sticker! It wasn't until I was at Mayo Clinic that they looked at my last two yearly blood results that Dr. Kristen Mahan ordered. My liver enzymes were elevated for two whole years and I was never alerted that it was high. It was never huge out of range but enough that something should have been done. So, the Mayo dr's knew I probably had CC for atleast two years if not three before diagnosis. I had been to heart drs, did stress tests, many EKG's, and everything kept coming back ok. I was more active than the average 'Joe' with going to the gym atleast 5 days a week not to mention my long bike rides, walking, 5K's, and even playing volleyball weekly. There might have been times I had a slight ache in my back but I always attributed it to exercising and maybe pulling a muscle.
IF you have/had cancer, IF you catch it early, you are one lucky person to find it early.....but there are some people who truly tried to live healthy and just got struck with the big C word anyway....and way too late. You can bet your bottom dollar that I get a copy of my blood results each and every time I have a blood draw. Dr. Subbiah stated to me back in January for me to not worry about my bloodwork as it can fluctuate so much AND it was his job to keep an eye on my labs.... but I beg your pardon!! Maybe if I would have been wiser or more adamant to get my results 7 years ago, I wouldn't be fighting this beast STILL. But, we can only look forward and to see many more sunny days and making memories in my lifetime!
In closing, enjoy this Season of LIFE. The real meaning of Easter....what does it mean to you? To me? It's knowing that Easter is the oldest Christian holiday and the most important day of the church year. Easter celebrates and commemorates the central event of the Christian faith: the resurrection of Jesus Christ three days after his death. As I sit here letting this run through my mind, I am always thankful and amazed at just how AMAZING our God truly is.
Yes, there will be colored eggs sprawled about as my family gathers to celebrate at the "Cummins-Zuber Ranch" but we will also take a minute to give thanks to our Almighty God and to celebrate each and every day on this earth.
God bless you all who read my blog! Celebrate LIFE every day!!
God bless~~
Patty Corcoran
Sunday, February 26, 2017
STILL MARCHING!
First off, I want to apologize for not posting an update sooner. I AM still marching in the trial and had a good report from my scan a little over a week ago. I had 8% shrinkage according to Dr.Subbiah who is the doctor over this trial at MD Anderson. We somehow got out of the last appointment without getting a copy of the scan report but when it finally got on the "my mdanderson website" I noticed a couple places of concern noted on the scan which I was a little OR ALOT worried about.
I decided to call in my favorite doctor, Dr. Javle to take a look. He was also a little concerned so he asked for a re-read of my scan. Although there are a couple of places that are concerning, there was shrinkage so I will continue cautiously. The diarrhea has stopped and I also had a different pill to help me sleep at night. THIS has been a huge adjustment but I am adjusting although my body is saying "WHAT HAPPENED"? A girl needs her beauty sleep....!
I will back up to last Friday when I had an appointment to see the nurse practitioner, Clover. Before they called me back to get all my vitals, Dr. Subbiah came out to talk with us. He states he had my scan re-read 3 times by different radiologists plus he measured the shrinkage himself. He states the trial drug is working...to be patient. At this point I realize Dr. Subbiah knows I asked Dr. Javle to look at the scan and also other doctors. It's ok, this is my life and I need to be on the defense if I am not 100% confident about the trial. Once I was with Clover for my visit, I received a copy of my bloodwork. It all showed a significant decrease in my liver enzymes, my LDH, and my Alk Phosphatase. This is a GOOD sign that maybe the trial is really working. I had only been on the trial two cycles before my scan so I need to give it another 3 cycles to see results 100%. So....I WILL MARCH!
I have an appointment this Friday, the 3rd of March with bloodwork and a visit with whoever decides to see me. If my bloodwork is good, I will continue and start cycle 4 in a week from the 3rd(the next Friday). I am on the drug two weeks...then off a week. That is 1 cycle. After the appointment on the 3rd, Pat and I will start off for Illinois. We will be there until March 12 and on the 12th, we will fly to Houston for appointments on the 13th. We are also in the process of seeing if I can have weekly blood draws in my hometown and fax the results to Dr. Subbiah. This would mean I would go down every three weeks instead of weekly visits. I pray this is approved so I can be at HOME more and less in an RV Resort in Texas!
We had a beautiful day Saturday going to a Big Top Vintage Market in Old Town Spring, Texas with Linda Burgener and Margaret Burgener. The temp was perfect and the food was good at a nearby restaurant.
Monday evening, Pat and I are meeting a very nice lady we met at the Cholangiocarcinoma Conference last month. Her name is Patti and she lives here in Houston. She seems very delightful and she is meeting us at an Italian restaurant where my nurse, Ron and his wife might catch up with us for dessert. Ron suggested the restaurant so it better be good! To say I am excited would be an understatement as socialization is definitely lacking on most days when Pat and I just walk in our campground for exercise.
I think that about sums up everything for an update. There have been quite a few patients with CC that have passed lately. It scares a person and makes you realize even more that every day is a blessing. I pray that advancements with CC is soon on the horizon and pray it happens before my "light" goes off. I can only say it is a true miracle I am still on this earth. God has granted me more time with my family and friends. I can only give thanks and praise to Him.....as I know most days I am not worthy. But I am blessed and I do give thanks to our great Father. For without Him, I am nothing!
God bless and enjoy your day.....everyday!
Hugs,
Patty
I decided to call in my favorite doctor, Dr. Javle to take a look. He was also a little concerned so he asked for a re-read of my scan. Although there are a couple of places that are concerning, there was shrinkage so I will continue cautiously. The diarrhea has stopped and I also had a different pill to help me sleep at night. THIS has been a huge adjustment but I am adjusting although my body is saying "WHAT HAPPENED"? A girl needs her beauty sleep....!
I will back up to last Friday when I had an appointment to see the nurse practitioner, Clover. Before they called me back to get all my vitals, Dr. Subbiah came out to talk with us. He states he had my scan re-read 3 times by different radiologists plus he measured the shrinkage himself. He states the trial drug is working...to be patient. At this point I realize Dr. Subbiah knows I asked Dr. Javle to look at the scan and also other doctors. It's ok, this is my life and I need to be on the defense if I am not 100% confident about the trial. Once I was with Clover for my visit, I received a copy of my bloodwork. It all showed a significant decrease in my liver enzymes, my LDH, and my Alk Phosphatase. This is a GOOD sign that maybe the trial is really working. I had only been on the trial two cycles before my scan so I need to give it another 3 cycles to see results 100%. So....I WILL MARCH!
I have an appointment this Friday, the 3rd of March with bloodwork and a visit with whoever decides to see me. If my bloodwork is good, I will continue and start cycle 4 in a week from the 3rd(the next Friday). I am on the drug two weeks...then off a week. That is 1 cycle. After the appointment on the 3rd, Pat and I will start off for Illinois. We will be there until March 12 and on the 12th, we will fly to Houston for appointments on the 13th. We are also in the process of seeing if I can have weekly blood draws in my hometown and fax the results to Dr. Subbiah. This would mean I would go down every three weeks instead of weekly visits. I pray this is approved so I can be at HOME more and less in an RV Resort in Texas!
We had a beautiful day Saturday going to a Big Top Vintage Market in Old Town Spring, Texas with Linda Burgener and Margaret Burgener. The temp was perfect and the food was good at a nearby restaurant.
Monday evening, Pat and I are meeting a very nice lady we met at the Cholangiocarcinoma Conference last month. Her name is Patti and she lives here in Houston. She seems very delightful and she is meeting us at an Italian restaurant where my nurse, Ron and his wife might catch up with us for dessert. Ron suggested the restaurant so it better be good! To say I am excited would be an understatement as socialization is definitely lacking on most days when Pat and I just walk in our campground for exercise.
I think that about sums up everything for an update. There have been quite a few patients with CC that have passed lately. It scares a person and makes you realize even more that every day is a blessing. I pray that advancements with CC is soon on the horizon and pray it happens before my "light" goes off. I can only say it is a true miracle I am still on this earth. God has granted me more time with my family and friends. I can only give thanks and praise to Him.....as I know most days I am not worthy. But I am blessed and I do give thanks to our great Father. For without Him, I am nothing!
God bless and enjoy your day.....everyday!
Hugs,
Patty
Sunday, February 5, 2017
I AM AMAZED!
Since my last post, I have started my second cycle of my trial. Side effects are a little worse as far as diarrhea...even waking me up in the middle of two nights so far. The only other side effect is I had one mouth sore but it was caught early by Clover, the nurse practitioner I saw. I received a script for the "magic mouthwash" that numbs your entire mouth but within four days the sore was gone. Dr. Subbiah who is over his clinical trial told me about a new mouthwash (new to me) and I ordered and received it. You use it every day whether you have a sore or not as it also aids in protecting your throat and stomach from getting sores. You cannot get it at a store so I am hoping to start it today and it will keep all sores away. If any chemo patient is interested in the name.....message me for it. Other than that, I am feeling great. I just hope and pray that it is a good indication that the clinical drug is working.
As a lot of you know, I attended and was a patient speaker at the Annual Cholangiocarcinoma Foundation Conference in Salt Lake City. It was 3 days long but so much support, learning, and meeting fellow warriors. There were doctors, researchers, biologists, drug and medical research representatives from all over the world including Malaysia, Thailand, Taiwan, Austria and Australia....and one man from Milan. There were many, many doctors from major cancer centers in the United States. OF COURSE MY DOCTOR WAS THERE WITH HIS NURSE RON! They actually came in to Salt Lake on Tuesday night or Wednesday morning so they could hear two of his patients speak and tell their story. Come to think of it, we were the two that received standing ovations. I wonder how much Dr. Javle had to pay for that to happen...HAH! I will post my speech on here in a couple weeks when it is on the Cholangiocarcinoma.org website.
Something very exciting for me was several doctors are talking about the FGFR2 mutation which I have. A lot of studies are being conducted in the lab for this mutation and it gives me so much hope and anticipation that a drug that works for this mutation is on the horizon!
Pat and I walked about 2 1/2 miles this morning. Super Bowl is later today and the traffic is nuts. It was nuts last night when we got off the plane at Hobby with lots of people going to the football game on Sunday. This is the only day Pat and I act like football fans just so he can eat his melted cheese/chorizo/ and some pico d'gallo served with nacho chips and I get cucumber sticks, carrots sticks, and green pepper strips. I might even splurge with a little blue cheese dressing for a dip. He'll probably have a beer and I will keep drinking water. We're really exciting people in the trailer park! ;-)
I want to mention a fundraiser that is going on the whole month of February. Charming Charlie is donating 10% of all sales all over the United States in the month of February to the Cholangiocarcinoma Foundation. Just take a picture of the coupon at the end of the blog and they will make sure it is applied. How amazing is that! If you don't know what Charming Charlie is....it is a store with every accessory you could think of for women and older girls. It is very reasonable and even have some really cute purses...even some sweaters. If you have one in your area, please consider supporting this fundraiser where you end up with some really cute stuff!!
As I stood up at that podium and was telling my story with cancer, it made me realize how blessed I truly am. As I pray morning and night (and lots of times in between), I pray God keeps leading me on this cancer/life journey. I know I can't do it alone....and I am blessed with the CCF and my own family and friends. I am so grateful to have God right beside me every step of the way. I am not perfect and I ask for God to forgive me daily. I am at peace with my life and I know that no matter what or where life leads me, my amazing God is there to catch me if I would ever fall. I am not afraid of dying although I do tell God I still have a lot of life to live if it is his will. I am at peace because I know God truly is right beside me. I AM BLESSED!!
Until next time......God keep close to you!
Hugs,
Patty Corcoran
GO SHOPPING!!!!!!!!
Speaking at the Cholangiocarcinoma Foundation AnnualConference 2017
As a lot of you know, I attended and was a patient speaker at the Annual Cholangiocarcinoma Foundation Conference in Salt Lake City. It was 3 days long but so much support, learning, and meeting fellow warriors. There were doctors, researchers, biologists, drug and medical research representatives from all over the world including Malaysia, Thailand, Taiwan, Austria and Australia....and one man from Milan. There were many, many doctors from major cancer centers in the United States. OF COURSE MY DOCTOR WAS THERE WITH HIS NURSE RON! They actually came in to Salt Lake on Tuesday night or Wednesday morning so they could hear two of his patients speak and tell their story. Come to think of it, we were the two that received standing ovations. I wonder how much Dr. Javle had to pay for that to happen...HAH! I will post my speech on here in a couple weeks when it is on the Cholangiocarcinoma.org website.
Something very exciting for me was several doctors are talking about the FGFR2 mutation which I have. A lot of studies are being conducted in the lab for this mutation and it gives me so much hope and anticipation that a drug that works for this mutation is on the horizon!
Pat and I walked about 2 1/2 miles this morning. Super Bowl is later today and the traffic is nuts. It was nuts last night when we got off the plane at Hobby with lots of people going to the football game on Sunday. This is the only day Pat and I act like football fans just so he can eat his melted cheese/chorizo/ and some pico d'gallo served with nacho chips and I get cucumber sticks, carrots sticks, and green pepper strips. I might even splurge with a little blue cheese dressing for a dip. He'll probably have a beer and I will keep drinking water. We're really exciting people in the trailer park! ;-)
I want to mention a fundraiser that is going on the whole month of February. Charming Charlie is donating 10% of all sales all over the United States in the month of February to the Cholangiocarcinoma Foundation. Just take a picture of the coupon at the end of the blog and they will make sure it is applied. How amazing is that! If you don't know what Charming Charlie is....it is a store with every accessory you could think of for women and older girls. It is very reasonable and even have some really cute purses...even some sweaters. If you have one in your area, please consider supporting this fundraiser where you end up with some really cute stuff!!
As I stood up at that podium and was telling my story with cancer, it made me realize how blessed I truly am. As I pray morning and night (and lots of times in between), I pray God keeps leading me on this cancer/life journey. I know I can't do it alone....and I am blessed with the CCF and my own family and friends. I am so grateful to have God right beside me every step of the way. I am not perfect and I ask for God to forgive me daily. I am at peace with my life and I know that no matter what or where life leads me, my amazing God is there to catch me if I would ever fall. I am not afraid of dying although I do tell God I still have a lot of life to live if it is his will. I am at peace because I know God truly is right beside me. I AM BLESSED!!
Until next time......God keep close to you!
Hugs,
Patty Corcoran
 |
| Dr. Javle's nurse and more importantly, our friend-Ron Harris. |
Sunday, January 22, 2017
Anything Happens in Houston!
Yes, anything happens in Houston! We had some younger guys and girls move into the "park model" mobile home behind us and I just had an uneasy feeling about them. They paid for a weeks stay but left rather fast one afternoon. The following day, when management couldn't get anyone to answer the door, they entered and found suspicious looking and most likely drugs of several kinds. The group left so fast, they left a drivers license behind of one girl. Smart move.....not!
We also had a pretty good storm one evening with golf ball sized hail and it sure played a number on my car! I woke up last night to a storm and when I was doing laundry this morning, another guy said it woke him up and it was pea sized hail. That'll be enough of that stuff!! HMPH!
I have just a few days left on the clinical trial pill before getting a week off. My phosphorus level is at 6.6 and if it gets to 7, I will go on a drug to lower my phosphorus level. I feel great! Pat and I have been walking several days when possible and then there is all the walking from the Mays building to the Main building that does the body good if you have a good pace. I have about 3 pretty long days this week at MD Anderson for the trial. It starts tomorrow at 8 am and we will be there ATLEAST 8 hours. Same thing for Tuesday.
The main reason for the more than usual long days is because they are accommodating me so I can attend the Cholangiocarcinoma Conference from Feb1-3....but we will fly there on the 31st and fly back to Houston on the 4th. I actually get to speak and it will be live streamed on the CCF website. I believe I speak at 3 p.m.
I want to thank everyone for the birthday wishes on Facebook, the cards I received, the Edible Bouquet from Chris and Samantha.
I am so blessed with my family, friends, and all the prayer lists I am on throughout the U.S. I am blessed with God's peace and I have a calmness in my heart that only God could put there. I have hope and am excited because I truly believe this trial drug is working inside my body.
In two days, I get that week off of the drug. That is one cycle. Only two more cycles, then we will scan to hear great news!!
Hugs & God Bless!!
Patty Corcoran
We also had a pretty good storm one evening with golf ball sized hail and it sure played a number on my car! I woke up last night to a storm and when I was doing laundry this morning, another guy said it woke him up and it was pea sized hail. That'll be enough of that stuff!! HMPH!
I have just a few days left on the clinical trial pill before getting a week off. My phosphorus level is at 6.6 and if it gets to 7, I will go on a drug to lower my phosphorus level. I feel great! Pat and I have been walking several days when possible and then there is all the walking from the Mays building to the Main building that does the body good if you have a good pace. I have about 3 pretty long days this week at MD Anderson for the trial. It starts tomorrow at 8 am and we will be there ATLEAST 8 hours. Same thing for Tuesday.
The main reason for the more than usual long days is because they are accommodating me so I can attend the Cholangiocarcinoma Conference from Feb1-3....but we will fly there on the 31st and fly back to Houston on the 4th. I actually get to speak and it will be live streamed on the CCF website. I believe I speak at 3 p.m.
I want to thank everyone for the birthday wishes on Facebook, the cards I received, the Edible Bouquet from Chris and Samantha.
I am so blessed with my family, friends, and all the prayer lists I am on throughout the U.S. I am blessed with God's peace and I have a calmness in my heart that only God could put there. I have hope and am excited because I truly believe this trial drug is working inside my body.
In two days, I get that week off of the drug. That is one cycle. Only two more cycles, then we will scan to hear great news!!
Hugs & God Bless!!
Patty Corcoran
Monday, January 9, 2017
New Year.....New Plan!
My last dose of chemo or any treatment that I have had for this demon of a cancer was Nov. 10. I can tell my cancer cells are having one heck of a party in my belly so I truly am excited to get started on something to stop this cancer from growing anymore. I knew at two months that the chemo was not working so that is when we got the scan and then waited for my appointments in Houston.
I kept my appointment for MD Anderson on Jan 12 &13. Dr. Javle talked about another chemo option which I flat turned down and then there were two clinical trials for my FGFR2 mutation. One was full and who knows when there would be an opening, so we chose the clinical trial listed on my last post. I am too tired to get up and go look. :-)
This clinical drug is a phase 1/2 meaning they have already figured out the safest dose and it is some similar to the BGJ398 trial I was on for 8 months. BUT, this time there are no lowering phosphate drugs to go along with every meal, just the clinical trial drug you take once a day. You take the drug for two weeks, and then you get a week off.....then it starts all over again. We will be down here for a bit as they keep a close eye on you and check your blood levels every week and see a dr.
Our address for now is Southlake RV Resort, 13701 Hycohen Road, Houston, Texas 77047
Pat and I have been walking 1 1/2 miles a day but today I was so pooped from being at MDA most of the day and then a trip to the supermarket to get a few more things at the store. I get my first dose of the trial drug on January 10 (Tuesday) and will be at MD Anderson for 8 hours for monitoring.
It has been awhile since I have had any treatment and looking at my labs, it's pretty angry inside my belly. I have faith that I will continue on this Journey with God right beside me. I had a day I was pretty down and when I went to bed, I sobbed a bit. Then, I dreamed I was in a cemetery wondering all over hunting for my tombstone (a little morbid...I know)....and I came upon one that made me stop.....it was a rock and it had HOPE carved into it. The dream made me wake up about that time and I just thanked God for that nudge to keep going. I am not ready to stop marching yet!!
I still have HOPE. To me, to have hope means you have faith...when you have faith, you have HOPE! They just go hand in hand with our great Father.
So, as I start this new trial tomorrow, I ask for prayers that it will stop the cancer cells in their tracks. There are SO many new drugs/immunotherapies for mutations coming out and 2017 looks very promising.
Thanks for checking in and may God be right beside you every second of every day!!
Hugs and God Bless!!
Patty Corcoran
Friday, December 30, 2016
On the move soon!
I have been accepted into the clinical trial INCB054828 (you can punch that in on clinicaltrials.gov and find out more about it if you just really are bored). It is for the FGFR mutation which I have.This means insurance has approved for me to be in it but I still have to pass some bloodwork, EKG, vision test, physical, and a scan unless they use the one from about 2 weeks ago.
We have rented a "park model" at a sister site to the one we have stayed at before. It was already full. This RV park is about 10 minutes farther away from MD Anderson and so we just have to get there sometime in the next 5-7 days and see if I pass all of their qualifications.
I am ready to get on something and kill those cancer cells that are dancing around in there. I wanted to update everyone very quickly and we will keep you posted from Houston.
I feel good about this trial. I pray to our Lord that good things are ahead for me. I am thankful for everyday on this earth BUT I sure would like to take my grandkids swimming this summer, speak at The Cholangiocarcinoma Conference, just living each day to its fullest is a blessing. Thank you God!!!
Everyone have a safe and Happy New Year!!
Love and Hugs!!
Patty Corcoran
We have rented a "park model" at a sister site to the one we have stayed at before. It was already full. This RV park is about 10 minutes farther away from MD Anderson and so we just have to get there sometime in the next 5-7 days and see if I pass all of their qualifications.
I am ready to get on something and kill those cancer cells that are dancing around in there. I wanted to update everyone very quickly and we will keep you posted from Houston.
I feel good about this trial. I pray to our Lord that good things are ahead for me. I am thankful for everyday on this earth BUT I sure would like to take my grandkids swimming this summer, speak at The Cholangiocarcinoma Conference, just living each day to its fullest is a blessing. Thank you God!!!
Everyone have a safe and Happy New Year!!
Love and Hugs!!
Patty Corcoran
Saturday, December 17, 2016
Time For A New Route!
As I finished up two months of the Irinotecan/5FU pump, I knew it wasn't working. I told Dr. Dy I thought I might have some fluid buildup (which I knew would result in a CT scan). And, the CT scan showed the chemo was not working and there was some growth....small BUT I knew the drug was not working. So, Dr. Javle was sent a copy of the scan and he agreed we needed to change courses.
I knew I only had about 3 weeks before my regularly scheduled visit with Dr. Javle. So, another scan later and lots of bloodwork showed the growth BUT the three weeks before I went to Houston gave Dr. J time to look at our options. I could do a different chemo :-( or there were two clinical trials he was interested in for me to think about. One is called TAS 120 but it is full. The other option is a drug called INCB054828. I asked the clinical trial doctor a lot of questions about this trial as right now it seems the most viable option. I would basically have to live in Houston the first two months and then he would request a waiver so I could get bloodwork and see Dr. Dy weekly (that means I could come home). I would then go to Houston monthly to get drugs, and all the other stuff that goes along with a clinical trial (eye visit, EKG, dr visit, bloodwork, etc.).
I asked the clinical trial dr what kind of success they have had with this drug. It is at many of the big hospitals for cancer/research centers. He stated the only patients it does seem to be working in is cholangiocarcinoma patients with my mutation (FGFR).
Dr. Javle will call me on Monday to discuss what I want to do and weigh in his thoughts. Needless to say, Pat and I are not looking forward to staying in Texas probably the first of January (for two months) sometime BUT when you are fighting for your life.....you have to move quickly.
I also found out part of the reason I am SO tired is NOT because of the chemo I was on but my iron is at 11. Normal iron in a human should be between something like 35 and 176. Dr. Javle drew even more blood after seeing that so we can get to the bottom of that and get me some energy!
As we were flying to Houston, I asked God for options....that the doctors had something other than chemo if at all possible. The growth is not terrible but it needs to be stopped!! I pray one of these options give me that!!
I ask for prayers and more prayers. I also want to thank everyone who has dropped off meals when I was getting that chemo that about killed me! The meals were a lifesaver!!
I will keep you posted after talking to Dr. Javle and we make a plan. I have faith this will work for months!! Then, maybe something new will be available!!
Hugs & God Bless~~
Patty Corcoran
I knew I only had about 3 weeks before my regularly scheduled visit with Dr. Javle. So, another scan later and lots of bloodwork showed the growth BUT the three weeks before I went to Houston gave Dr. J time to look at our options. I could do a different chemo :-( or there were two clinical trials he was interested in for me to think about. One is called TAS 120 but it is full. The other option is a drug called INCB054828. I asked the clinical trial doctor a lot of questions about this trial as right now it seems the most viable option. I would basically have to live in Houston the first two months and then he would request a waiver so I could get bloodwork and see Dr. Dy weekly (that means I could come home). I would then go to Houston monthly to get drugs, and all the other stuff that goes along with a clinical trial (eye visit, EKG, dr visit, bloodwork, etc.).
I asked the clinical trial dr what kind of success they have had with this drug. It is at many of the big hospitals for cancer/research centers. He stated the only patients it does seem to be working in is cholangiocarcinoma patients with my mutation (FGFR).
Dr. Javle will call me on Monday to discuss what I want to do and weigh in his thoughts. Needless to say, Pat and I are not looking forward to staying in Texas probably the first of January (for two months) sometime BUT when you are fighting for your life.....you have to move quickly.
I also found out part of the reason I am SO tired is NOT because of the chemo I was on but my iron is at 11. Normal iron in a human should be between something like 35 and 176. Dr. Javle drew even more blood after seeing that so we can get to the bottom of that and get me some energy!
As we were flying to Houston, I asked God for options....that the doctors had something other than chemo if at all possible. The growth is not terrible but it needs to be stopped!! I pray one of these options give me that!!
I ask for prayers and more prayers. I also want to thank everyone who has dropped off meals when I was getting that chemo that about killed me! The meals were a lifesaver!!
I will keep you posted after talking to Dr. Javle and we make a plan. I have faith this will work for months!! Then, maybe something new will be available!!
Hugs & God Bless~~
Patty Corcoran
Wednesday, November 30, 2016
Where Have I Been?
It has been right at 30 days or so since my last post....and so much has happened. I had four rounds of chemo and I knew my stomach was looking a little larger. I was worried about fluid buildup (ascites) so I asked Dr. Dy in Effingham if we could do a CT scan. I also gained 6 pounds which is another sign of fluid. BUT....the scan came back that I had no ascites. (That's the good news.......).
The bad news is MD Anderson had been watching some nodules in the lining of my stomach. You have the outside of your stomach...then fluid...then a saran wrap type of lining that hold the fluid that keeps the fluid intact. Those pesky nodules had grown in the two months on my chemo. Everything else is stable but we need to stomp on these nodules.
Before we do anything, I already had appointments in two weeks for a scan, bloodwork, a biopsy of the nodules on the stomach lining, and a visit with the great Dr. Javle. We want to know if there are new genetic mutations that we might have more treatment options for. Those biopsies are no picnic with a large gauge needle piecing your skin and getting to the nodule. THEN, comes the chomping of a staple gun sound as it bites a piece of the nodule. Last time, I heard it chomp three times as I opened my eyes wide open after each chomp! BUT. if it helps....I'm in...if we don't find any useful information, atleast we know we have left no stone unturned.
After the biopsy, I will return home and start a different chemo regimin until the biopsy results come back. I believe I will be on Gemcitabine and Abraxane (chemo drugs) and they are supposedly no picnic. So, we shall see.
This news isn't the best news but it is not the worst. We have known for quite some time that I am just darned hard headed and am not giving up. We will treat this cancer as things pop up and pray for the best!
In February, it will be 6 years of fighting this devil called intra-hepatic cholangiocarcinoma. I have been so blessed with WAAAAAY more good days...months...years than bad ones. No doctor has ever promised me a long life....but Dr. Javle has promised to use every tool in the tool box until we are out of options. He has given me hope when other doctors could not.
So, as I close tonight, know that I am calm.I cannot worry what is going to happen next.....I have to live while I can. I cannot think about the nodes that could be growing in my stomach lining until I get on a chemo regimin. No....God is with me every step of every day! No matter what happens to this fat lady.....I HAVE LIVED!!
May Christ be in your Christmas!
I promise to blog after returning from Houston in a couple weeks!
Love & hugs,
Patty
The bad news is MD Anderson had been watching some nodules in the lining of my stomach. You have the outside of your stomach...then fluid...then a saran wrap type of lining that hold the fluid that keeps the fluid intact. Those pesky nodules had grown in the two months on my chemo. Everything else is stable but we need to stomp on these nodules.
Before we do anything, I already had appointments in two weeks for a scan, bloodwork, a biopsy of the nodules on the stomach lining, and a visit with the great Dr. Javle. We want to know if there are new genetic mutations that we might have more treatment options for. Those biopsies are no picnic with a large gauge needle piecing your skin and getting to the nodule. THEN, comes the chomping of a staple gun sound as it bites a piece of the nodule. Last time, I heard it chomp three times as I opened my eyes wide open after each chomp! BUT. if it helps....I'm in...if we don't find any useful information, atleast we know we have left no stone unturned.
After the biopsy, I will return home and start a different chemo regimin until the biopsy results come back. I believe I will be on Gemcitabine and Abraxane (chemo drugs) and they are supposedly no picnic. So, we shall see.
This news isn't the best news but it is not the worst. We have known for quite some time that I am just darned hard headed and am not giving up. We will treat this cancer as things pop up and pray for the best!
In February, it will be 6 years of fighting this devil called intra-hepatic cholangiocarcinoma. I have been so blessed with WAAAAAY more good days...months...years than bad ones. No doctor has ever promised me a long life....but Dr. Javle has promised to use every tool in the tool box until we are out of options. He has given me hope when other doctors could not.
So, as I close tonight, know that I am calm.I cannot worry what is going to happen next.....I have to live while I can. I cannot think about the nodes that could be growing in my stomach lining until I get on a chemo regimin. No....God is with me every step of every day! No matter what happens to this fat lady.....I HAVE LIVED!!
May Christ be in your Christmas!
I promise to blog after returning from Houston in a couple weeks!
Love & hugs,
Patty
Thursday, October 13, 2016
Oh boy! OH BOY!
It is hard to believe that so much has happened since my last blogpost and I have not kept people updated. Yes, I received a TITANIUM BARD (brand name) port placed on my upper right side of my chest. The biggest pain with it is carrying the chemo and infusion pump around and not forgetting to grab it or down it goes! I have received not one but two infusions of chemotherapy. The second infusion was on Monday, October 12. I received the Irinotecan and pre meds at Crossroads Cancer Center in Effingham. My white count was 4 at my first infusion and at my bloodwork on Monday, it was 2. My dr asked me to wait before sending me home as they were checking the leukocytes and although he doubted they were over 1,000....IF they were, he would ok me to get chemo. Well, to his surprise, they were over 1,200 so we proceeded. Next Monday, Wednesday, and Friday I will go to RMH (local hospital) to get the Neupogen shots. This will boost my white count and hopefully I will have minimal side effects from those shots. I had severe bone pain the last time I shot up these pretty puppies!! AND, last time I had to take these shots, they were either sent home with me or I got them at my local pharmacy....but things have changed and I have to go to outpatient surgery to get the shots.
I will probably stay very close to home until I start the Neupogen shots as Dr. Dy said I could get pneumonia very easily over the next 5-7 days if I came into contact with cold like germs. My first round of chemo was a piece of cake until Friday evening (my infusions are always on Wednesday) and I could start to feel my body go into low gear. I went to bed at 8 pm-ish and woke up at 6:30 am...had my hot green tea, then back to bed at 7:30 am and I SLEPT soundly until 1:30 pm. WOW! I rested the rest of Saturday just watching tv. I struggled to get presentable for my second grandchild's 5th birthday party on Sunday, then back home into my jammies. It took a few more days before I was ready to be "normal" (somewhat anyway).
So, tonight I went to a visitation of a cancer patient and even more importantly, a very beautiful friend with an amazing family. My heart just hurts for them. It was the second death of a cancer friend that has passed this last week. Patti Means and I met up in Houston and both had the same cancer. We went to supper with our husbands and she brought souvenirs from Seattle, Washington. She was a true gem and I will miss our visits.
I have been so very blessed to have friends and family bring in food on the days I didn't even get dressed. Pat can fix the easy stuff but not homemade chicken and noodle soup or homemade chicken and stars.....my mom came out and fixed red potatoes, pork steak, homemade gravy, and green beans. It was a meal my mom used to fix when we were little and it reminded me of us all sitting around the table....it was always a good meal!! Tonight, we had corn chowder at my daughter Amy's and her husband Rylan and it was awesome....better than I was expecting!! ;-) Jennifer (my oldest daughter)has had friends call to bring a meal on those "bad days" and has started a calendar if you are interested in bringing a meal. They are such a help. I cannot have nuts, popcorn, or things that are harder for me to process. My friend Debbie Weiler brought a cold salad with fruit, Cool Whip, and cream cheese and it just tasted good of an evening.
So....I am slowly marching...and it will get a little slower before I climb back out of the hole I feel like I will be in by Saturday. Over this past weekend, I cleaned and washed some windows, washed linens, put out fall decorations, I even pulled some weeds in the main flower garden...so I DO have several good days before it is time for chemo again.
Tomorrow (Friday), I go back to Crossroads to get my chemo pump removed. YES!
I had a fellow cholangiocarcinoma patient who is NED (no evidence of disease for those of you who do not know the cancer technology). Julie Tupker and her husband "Tup" came in on Tuesday afternoon and we had the best supper in town at Olde Tyme Steakhouse before coming back to our house where they spent the night with us! Julie and I talked past 11 pm and I knew I had chemo the next day or I KNOW we could have talked all night!! What a joy to visit with a fellow CC survivor....and they are from Iowa but on their way to Nashville so we were a nice little pit stop on their mini vacation.
In closing, I just want to thank my friends and family for prayers, thoughts, messages, texts, and hugs. Nothing tugs at my heart more than seeing another family grieving for a family member. Life...and death are a part of our life cycle....but I do believe both ladies I know that recently passed had angels waiting on them. NO DOUBT IN MY MIND!
I will try and keep you all updated a little sooner. It just depends on how I feel.
Hugs and God Bless you!!
Patty
I will probably stay very close to home until I start the Neupogen shots as Dr. Dy said I could get pneumonia very easily over the next 5-7 days if I came into contact with cold like germs. My first round of chemo was a piece of cake until Friday evening (my infusions are always on Wednesday) and I could start to feel my body go into low gear. I went to bed at 8 pm-ish and woke up at 6:30 am...had my hot green tea, then back to bed at 7:30 am and I SLEPT soundly until 1:30 pm. WOW! I rested the rest of Saturday just watching tv. I struggled to get presentable for my second grandchild's 5th birthday party on Sunday, then back home into my jammies. It took a few more days before I was ready to be "normal" (somewhat anyway).
So, tonight I went to a visitation of a cancer patient and even more importantly, a very beautiful friend with an amazing family. My heart just hurts for them. It was the second death of a cancer friend that has passed this last week. Patti Means and I met up in Houston and both had the same cancer. We went to supper with our husbands and she brought souvenirs from Seattle, Washington. She was a true gem and I will miss our visits.
I have been so very blessed to have friends and family bring in food on the days I didn't even get dressed. Pat can fix the easy stuff but not homemade chicken and noodle soup or homemade chicken and stars.....my mom came out and fixed red potatoes, pork steak, homemade gravy, and green beans. It was a meal my mom used to fix when we were little and it reminded me of us all sitting around the table....it was always a good meal!! Tonight, we had corn chowder at my daughter Amy's and her husband Rylan and it was awesome....better than I was expecting!! ;-) Jennifer (my oldest daughter)has had friends call to bring a meal on those "bad days" and has started a calendar if you are interested in bringing a meal. They are such a help. I cannot have nuts, popcorn, or things that are harder for me to process. My friend Debbie Weiler brought a cold salad with fruit, Cool Whip, and cream cheese and it just tasted good of an evening.
So....I am slowly marching...and it will get a little slower before I climb back out of the hole I feel like I will be in by Saturday. Over this past weekend, I cleaned and washed some windows, washed linens, put out fall decorations, I even pulled some weeds in the main flower garden...so I DO have several good days before it is time for chemo again.
Tomorrow (Friday), I go back to Crossroads to get my chemo pump removed. YES!
I had a fellow cholangiocarcinoma patient who is NED (no evidence of disease for those of you who do not know the cancer technology). Julie Tupker and her husband "Tup" came in on Tuesday afternoon and we had the best supper in town at Olde Tyme Steakhouse before coming back to our house where they spent the night with us! Julie and I talked past 11 pm and I knew I had chemo the next day or I KNOW we could have talked all night!! What a joy to visit with a fellow CC survivor....and they are from Iowa but on their way to Nashville so we were a nice little pit stop on their mini vacation.
In closing, I just want to thank my friends and family for prayers, thoughts, messages, texts, and hugs. Nothing tugs at my heart more than seeing another family grieving for a family member. Life...and death are a part of our life cycle....but I do believe both ladies I know that recently passed had angels waiting on them. NO DOUBT IN MY MIND!
I will try and keep you all updated a little sooner. It just depends on how I feel.
Hugs and God Bless you!!
Patty
Oh boy! OH BOY!
It is hard to believe that so much has happened since my last blogpost and I have not kept people updated. Yes, I received a TITANIUM BARD (brand name) port placed on my upper right side of my chest. The biggest pain with it is carrying the chemo and infusion pump around and not forgetting to grab it or down it goes! I have received not one but two infusions of chemotherapy. The second infusion was on Monday, October 12. I received the Irinotecan and pre meds at Crossroads Cancer Center in Effingham. My white count was 4 at my first infusion and at my bloodwork on Monday, it was 2. My dr asked me to wait before sending me home as they were checking the leukocytes and although he doubted they were over 1,000....IF they were, he would ok me to get chemo. Well, to his surprise, they were over 1,200 so we proceeded. Next Monday, Wednesday, and Friday I will go to RMH (local hospital) to get the Neupogen shots. This will boost my white count and hopefully I will have minimal side effects from those shots. I had severe bone pain the last time I shot up these pretty puppies!! AND, last time I had to take these shots, they were either sent home with me or I got them at my local pharmacy....but things have changed and I have to go to outpatient surgery to get the shots.
I will probably stay very close to home until I start the Neupogen shots as Dr. Dy said I could get pneumonia very easily over the next 5-7 days if I came into contact with cold like germs. My first round of chemo was a piece of cake until Friday evening (my infusions are always on Wednesday) and I could start to feel my body go into low gear. I went to bed at 8 pm-ish and woke up at 6:30 am...had my hot green tea, then back to bed at 7:30 am and I SLEPT soundly until 1:30 pm. WOW! I rested the rest of Saturday just watching tv. I struggled to get presentable for my second grandchild's 5th birthday party on Sunday, then back home into my jammies. It took a few more days before I was ready to be "normal" (somewhat anyway).
So, tonight I went to a visitation of a cancer patient and even more importantly, a very beautiful friend with an amazing family. My heart just hurts for them. It was the second death of a cancer friend that has passed this last week. Patti Means and I met up in Houston and both had the same cancer. We went to supper with our husbands and she brought souvenirs from Seattle, Washington. She was a true gem and I will miss our visits.
I have been so very blessed to have friends and family bring in food on the days I didn't even get dressed. Pat can fix the easy stuff but not homemade chicken and noodle soup or homemade chicken and stars.....my mom came out and fixed red potatoes, pork steak, homemade gravy, and green beans. It was a meal my mom used to fix when we were little and it reminded me of us all sitting around the table....it was always a good meal!! Tonight, we had corn chowder at my daughter, Amy's and it was awesome....better than I was expecting!! ;-) Jennifer has had friends call to bring a meal on those "bad days" and has started a calendar if you are interested in bringing a meal. They are such a help. I cannot have nuts, popcorn, or things that are harder for me to process. My friend Debbie Weiler brought a cold salad with fruit, Cool Whip, and cream cheese and it just tasted good of an evening.
So....I am slowly marching...and it will get a little slower before I climb back out of the hole I feel like I will be in by Saturday. Over this past weekend, I cleaned and washed some windows, washed linens, put out fall decorations, I even pulled some weeds in the main flower garden...so I DO have several good days before it is time for chemo again.
Tomorrow (Friday), I go back to Crossroads to get my chemo pump removed. YES!
I had a fellow cholangiocarcinoma patient who is NED (no evidence of disease for those of you who do not know the cancer technology). Julie Tupker and her husband "Tup" came in on Tuesday afternoon and we had the best supper in town at Olde Tyme Steakhouse before coming back to our house where they spent the night with us! Julie and I talked past 11 pm and I knew I had chemo the next day or I KNOW we could have talked all night!! What a joy to visit with a fellow CC survivor....and they are from Iowa but on their way to Nashville so we were a nice little pit stop on their mini vacation.
In closing, I just want to thank my friends and family for prayers, thoughts, messages, texts, and hugs. Nothing tugs at my heart more than seeing another family grieving for a family member. Life...and death are a part of our life cycle....but I do believe both ladies I know that has recently passed had angels waiting on them. NO DOUBT IN MY MIND!
I will try and keep you all updated a little sooner. It just depends on how I feel.
Hugs and God Bless you!!
Patty
I will probably stay very close to home until I start the Neupogen shots as Dr. Dy said I could get pneumonia very easily over the next 5-7 days if I came into contact with cold like germs. My first round of chemo was a piece of cake until Friday evening (my infusions are always on Wednesday) and I could start to feel my body go into low gear. I went to bed at 8 pm-ish and woke up at 6:30 am...had my hot green tea, then back to bed at 7:30 am and I SLEPT soundly until 1:30 pm. WOW! I rested the rest of Saturday just watching tv. I struggled to get presentable for my second grandchild's 5th birthday party on Sunday, then back home into my jammies. It took a few more days before I was ready to be "normal" (somewhat anyway).
So, tonight I went to a visitation of a cancer patient and even more importantly, a very beautiful friend with an amazing family. My heart just hurts for them. It was the second death of a cancer friend that has passed this last week. Patti Means and I met up in Houston and both had the same cancer. We went to supper with our husbands and she brought souvenirs from Seattle, Washington. She was a true gem and I will miss our visits.
I have been so very blessed to have friends and family bring in food on the days I didn't even get dressed. Pat can fix the easy stuff but not homemade chicken and noodle soup or homemade chicken and stars.....my mom came out and fixed red potatoes, pork steak, homemade gravy, and green beans. It was a meal my mom used to fix when we were little and it reminded me of us all sitting around the table....it was always a good meal!! Tonight, we had corn chowder at my daughter, Amy's and it was awesome....better than I was expecting!! ;-) Jennifer has had friends call to bring a meal on those "bad days" and has started a calendar if you are interested in bringing a meal. They are such a help. I cannot have nuts, popcorn, or things that are harder for me to process. My friend Debbie Weiler brought a cold salad with fruit, Cool Whip, and cream cheese and it just tasted good of an evening.
So....I am slowly marching...and it will get a little slower before I climb back out of the hole I feel like I will be in by Saturday. Over this past weekend, I cleaned and washed some windows, washed linens, put out fall decorations, I even pulled some weeds in the main flower garden...so I DO have several good days before it is time for chemo again.
Tomorrow (Friday), I go back to Crossroads to get my chemo pump removed. YES!
I had a fellow cholangiocarcinoma patient who is NED (no evidence of disease for those of you who do not know the cancer technology). Julie Tupker and her husband "Tup" came in on Tuesday afternoon and we had the best supper in town at Olde Tyme Steakhouse before coming back to our house where they spent the night with us! Julie and I talked past 11 pm and I knew I had chemo the next day or I KNOW we could have talked all night!! What a joy to visit with a fellow CC survivor....and they are from Iowa but on their way to Nashville so we were a nice little pit stop on their mini vacation.
In closing, I just want to thank my friends and family for prayers, thoughts, messages, texts, and hugs. Nothing tugs at my heart more than seeing another family grieving for a family member. Life...and death are a part of our life cycle....but I do believe both ladies I know that has recently passed had angels waiting on them. NO DOUBT IN MY MIND!
I will try and keep you all updated a little sooner. It just depends on how I feel.
Hugs and God Bless you!!
Patty
Tuesday, September 20, 2016
HERE WE GO AGAIN!!!
September 22nd, I will have a new port placed in my upper chest. It took some doing to even get a surgeon to perform the procedure since the last port was maybe part of the blood clot problem I had and landed me in Prairie Heart in Springfield, Il for about 12 days. I am on blood thinners so we will stop them now and restart them a few days after the port is in. Then, we will check my ANTI X-A (a test to check the consistency of my blood). I can't remember if I am put all the way under for the port procedure but I know it was pretty quick. I will be sore for a few days and may have some restrictions....I will know more the day of surgery.
THEN.......next Wednesday, I will have my first dose of chemotherapy attached to my port and I will wear the pretty fanny pack that carries the chemo. It is like a 48 hour release of the chemo meds (Irinotecan, Leukovoran, and Xeloda). I will get this done every two weeks until I get another scan in December and I pray to our Father that the cancer is halted! I get some pretty ugly side effects from the chemo (or most people do). I have had the Irinotecan and Xeloda before but received it all in one day instead of spreading it over 48 hours. It knocked me off my can for several days before I could barely walk to the fridge for a glass of juice. But you steadily come out of it and feel great for a few days....and then, it is time to do it all again.
BUT, I am living. I will know when it is time to stop taking chemo when and IF it comes to the quality vs quantity of life. My dr in Houston says I am not going anywhere....to get that out of my head! So....LETS MARCH! Hup two...three...four!!!
Thank you for the cards, messages, and most of all...prayers!
Love & Hugs;
Patty Corcoran
THEN.......next Wednesday, I will have my first dose of chemotherapy attached to my port and I will wear the pretty fanny pack that carries the chemo. It is like a 48 hour release of the chemo meds (Irinotecan, Leukovoran, and Xeloda). I will get this done every two weeks until I get another scan in December and I pray to our Father that the cancer is halted! I get some pretty ugly side effects from the chemo (or most people do). I have had the Irinotecan and Xeloda before but received it all in one day instead of spreading it over 48 hours. It knocked me off my can for several days before I could barely walk to the fridge for a glass of juice. But you steadily come out of it and feel great for a few days....and then, it is time to do it all again.
BUT, I am living. I will know when it is time to stop taking chemo when and IF it comes to the quality vs quantity of life. My dr in Houston says I am not going anywhere....to get that out of my head! So....LETS MARCH! Hup two...three...four!!!
Thank you for the cards, messages, and most of all...prayers!
Love & Hugs;
Patty Corcoran
Wednesday, September 14, 2016
At a Loss For Words........
As I sit here at home, staring at this computer, I would like to whine and do the "sing and dance" about how I wish I could crawl under a rock and die. But I won't... yet.
My bloodwork was given to me by the radiology department during my scan, and I thought everything looked really good except one and it was one I don't remember seeing it before. It was grossly out of range. But, I remained optimistic that night and was ready for my scan results the next day. The clinical trial coordinator wouldn't give me any clues what my results were and said I would have to wait for the physician's assistant that was coming in next. SHE would not give me any clues and said Dr. Meric wanted to go over the scan results with me. I knew at this point, it wasn't good.
Dr. Meric said although the liver was stable, I had some new nodes in the lining of the stomach. I also had a few 2 cm nodes by my ovary that they had been watching and in two months they are 4 cm. It is enough growth to take me off the trial. She had another trial but I would have to travel to Texas every week. NOT. Then, Dr. Javle wanted to see me so we met with him. He wants to do Irinotecan along with Leukovoren and Xeloda. He wants to put a port in, and I would have a pump for two days while all three drugs are slowly released. Then, I would travel back to Effingham and have the fanny pack that holds the chemo removed. I would do this every two weeks. My family is concerned with a port as that is what caused all the blood clots over 5 years ago. Jenn has a call in to Dr. Goswami (my dr at St. Johns/Prairie Heart Institute in Springfield, Illinois who removed all the hundreds of clots last time) to see what he thinks. Dr. Dy believes we will be fine as long as we keep a close eye on the consistency of my blood.
I do not look forward to chemo but these chemotherapy agents have worked in the past so I feel better than entering a trial again. Along with the chemo, can come low white counts which would add the Neulasta shot. Kim, the nurse at Crossroads said the side effects are not quite as bad since it is slowly released over 48 hours instead of pushing the drugs into my system in a few hours.
I am not going to lie, when you get nodules (that they are pretty sure are cancerous) in the peritoneal region, it is time to get out the gloves and give it my best shot.
I know this is a pretty serious post, but it is pretty serious right now. I've been in tight spots before and have came out on top, I am not about to throw in the towel now!!
A huge thanks to David and Lynda Rands whom we stayed with in O'Fallon after a delayed flight and a midnight arrival to their house. They are great hosts and even better friends!!
Thank you all for your prayers and God is with me. ALWAYS! I am still here.....there's a sharp curve ahead but I have taken a few of those in the past and survived. So....stay tuned for the next step in this land of Cancer at the Corcoran's!
Hugs,
Patty
My bloodwork was given to me by the radiology department during my scan, and I thought everything looked really good except one and it was one I don't remember seeing it before. It was grossly out of range. But, I remained optimistic that night and was ready for my scan results the next day. The clinical trial coordinator wouldn't give me any clues what my results were and said I would have to wait for the physician's assistant that was coming in next. SHE would not give me any clues and said Dr. Meric wanted to go over the scan results with me. I knew at this point, it wasn't good.
Dr. Meric said although the liver was stable, I had some new nodes in the lining of the stomach. I also had a few 2 cm nodes by my ovary that they had been watching and in two months they are 4 cm. It is enough growth to take me off the trial. She had another trial but I would have to travel to Texas every week. NOT. Then, Dr. Javle wanted to see me so we met with him. He wants to do Irinotecan along with Leukovoren and Xeloda. He wants to put a port in, and I would have a pump for two days while all three drugs are slowly released. Then, I would travel back to Effingham and have the fanny pack that holds the chemo removed. I would do this every two weeks. My family is concerned with a port as that is what caused all the blood clots over 5 years ago. Jenn has a call in to Dr. Goswami (my dr at St. Johns/Prairie Heart Institute in Springfield, Illinois who removed all the hundreds of clots last time) to see what he thinks. Dr. Dy believes we will be fine as long as we keep a close eye on the consistency of my blood.
I do not look forward to chemo but these chemotherapy agents have worked in the past so I feel better than entering a trial again. Along with the chemo, can come low white counts which would add the Neulasta shot. Kim, the nurse at Crossroads said the side effects are not quite as bad since it is slowly released over 48 hours instead of pushing the drugs into my system in a few hours.
I am not going to lie, when you get nodules (that they are pretty sure are cancerous) in the peritoneal region, it is time to get out the gloves and give it my best shot.
I know this is a pretty serious post, but it is pretty serious right now. I've been in tight spots before and have came out on top, I am not about to throw in the towel now!!
A huge thanks to David and Lynda Rands whom we stayed with in O'Fallon after a delayed flight and a midnight arrival to their house. They are great hosts and even better friends!!
Thank you all for your prayers and God is with me. ALWAYS! I am still here.....there's a sharp curve ahead but I have taken a few of those in the past and survived. So....stay tuned for the next step in this land of Cancer at the Corcoran's!
Hugs,
Patty
Friday, September 9, 2016
Am I ready for this?
First off, I have to tell you a quick story that happened as Pat and I were at the Atlanta, Georgia Airport as we were traveling to St. Lucia. I noticed this man looking at me and he kind of looked familiar but I blew it off....after all, no one knows me this far from home. After about 20 minutes, This man stands up and starts walking my way.....I'm thinking ......well, I won't even tell you what I was thinking. He came up to me and said, "Are you Patty?" I paused.......and then said "yes" very slowly wondering who this man truly was. He stated his name was Lanny Andrews (and at THAT MOMENT) I knew exactly who he was. His wife had cholangiocarcinoma and sadly passed about 3 1/2 years ago. Cindy Andrews was a caring, sweet, and kind friend that I met due to this terrible disease called cholangiocarcinoma. But to think about this....sitting in an airport that he could recognize me...was crazy! Lanny still reads my blog....still keeps up on me...and that is how he recognized me. So, Thanks Lanny! Thanks for having the courage for coming over to see if it was me. Hope you had a great trip in Jamaica!! Here is a pic of Lanny & I at the airport . We had a red eye flight...so sorry about the "just got out of bed look."
Pat and I finally planted our feet on St. Lucia and was swiftly driven about an hour away to the Sandals Resort. It was the most amazing resort I have ever stayed at. Absolutely pristine from the rooms....to the pool...to the beach...to the food...to the never letting your glass get empty...they were always there. I was a pretty cheap date drinking glasses of ice, ice water, and virgin strawberry daiquiri's, and virgin pina colada's. Pat snorkeled every day and I snorkeled one....We also kayaked hard and fast around the large cove we were in. This was probably my second favorite trip so far that we have taken by ourselves. I picked out a few pics to share before ending with an update on my trial.
Pat and I before entering the Japanese Restaurant.
No....this isn't Pat and I! :-)
This wall separated Sandals from the beach. We had plenty of openings to go to the beach but the pool was right behind where this picture was taken.
The "other" side of the cove our resort is in. I think there were some hotels and Bed and Breakfasts along here.
The building sticking out is a Japanese Restaurant that we ate at on the Sandals Resort. It was fantastic!!
These colorful houses are part of the Sandal's Resort. Again, this is where Pat and I snorkeled.
They say there are NO sharks because the water is too warm. How about THAT! :-)
Pat and Pat-ty
This beautiful tree is like a gigantic Mimosa tree.....There were the pink blooms all over although you might not be able to see them in this picture.
I have been taking the clinical trial pills every day and still the worst side effects are abdominal cramps that usually happen right before "a big explosion" is about to happen. Needless to say I am a anti diarrheal junkie on an almost daily basis.
I travel back to MD Anderson in Houston on Sunday evening with bloodwork starting at 6:30 on Monday morning. I have the CT scan prep starting later that morning. Tuesday morning, I meet with a specialist of some kind to look at all the meds I take and if I am taking two together that should not be taken together. I have never had this done before but with all the "scoots"....it can't be a bad idea. Then.......I will get the CT scan and bloodwork results when I see Dr. Meric at noon. If all is well, we will wait the dreaded three hours for new drugs and fly out that evening.
What do I think the scan will show...good or bad. I don't have a clue. I know I am living life to the fullest. I babysit my youngest grandson two days a week, I am always on a journey each day. I have been painting some ocean animals and have a few more to finish before handing them over to a friend named Sam. WHATEVER the scan shows, we will take it in stride. I am in no pain, I feel mostly energetic, and I am just not sure what it will show. Stability would be wonderful....shrinkage is an added bonus. I prayed last night for God to take control of my life. I asked Him to do what He believes is the right thing to happen in my life...and to guide me on this journey.
Sometimes, you really do not realize how many people are dying from cancer until you are closely related to someone or have cancer yourself. Why is that? Why is it that most Relay for Life teams have members with cancer patients on them?
As the air starts to get cool and crisp, the hickory nuts and acorns start to fall, campfires start to happen more often this time of year, enjoy this special time of year. Enjoy the fall foliage as it will be on the ground in no time! Enjoy every day and give thanks to our amazing God for the view He gives us every day.
I will post maybe Tuesday with a report from the dr...maybe not until Wednesday evening. It all depends on when I have access to the internet.
Happy Fall Y'all!!
Hugs!
Patty Corcoran
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| A Sandals Sailboat |
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This was taken from our balcony. We snorkeled along the left side of the picture clear out to the edge of rock.
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I have been taking the clinical trial pills every day and still the worst side effects are abdominal cramps that usually happen right before "a big explosion" is about to happen. Needless to say I am a anti diarrheal junkie on an almost daily basis.
I travel back to MD Anderson in Houston on Sunday evening with bloodwork starting at 6:30 on Monday morning. I have the CT scan prep starting later that morning. Tuesday morning, I meet with a specialist of some kind to look at all the meds I take and if I am taking two together that should not be taken together. I have never had this done before but with all the "scoots"....it can't be a bad idea. Then.......I will get the CT scan and bloodwork results when I see Dr. Meric at noon. If all is well, we will wait the dreaded three hours for new drugs and fly out that evening.
What do I think the scan will show...good or bad. I don't have a clue. I know I am living life to the fullest. I babysit my youngest grandson two days a week, I am always on a journey each day. I have been painting some ocean animals and have a few more to finish before handing them over to a friend named Sam. WHATEVER the scan shows, we will take it in stride. I am in no pain, I feel mostly energetic, and I am just not sure what it will show. Stability would be wonderful....shrinkage is an added bonus. I prayed last night for God to take control of my life. I asked Him to do what He believes is the right thing to happen in my life...and to guide me on this journey.
Sometimes, you really do not realize how many people are dying from cancer until you are closely related to someone or have cancer yourself. Why is that? Why is it that most Relay for Life teams have members with cancer patients on them?
As the air starts to get cool and crisp, the hickory nuts and acorns start to fall, campfires start to happen more often this time of year, enjoy this special time of year. Enjoy the fall foliage as it will be on the ground in no time! Enjoy every day and give thanks to our amazing God for the view He gives us every day.
I will post maybe Tuesday with a report from the dr...maybe not until Wednesday evening. It all depends on when I have access to the internet.
Happy Fall Y'all!!
Hugs!
Patty Corcoran
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