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
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