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
Friday, December 30, 2016
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
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