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

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

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

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

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

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