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 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


  1. Hi Patty... just found your blog while reading some other faith blogs. I read back on several of your posts to try to learn more of what's going on in your life. Hubby and I will be praying for you, Pat, your families, and all involved in your care. Our God is BIGGER than anything that we have to face each day. I've added you to my reading list and will be back to visit and see how things are going. Hugs, prayers, and blessings to you!

  2. Patty you are so strong. I pray for you and your family as you go through your treatments. Be safe.Karen

  3. Oh Patty I simply HAVE to make the time in the next few days to write to you [it's Kathie, the woman who asked for your email recently-- just haven't gotten to sitting down long enough and focussed enough to tell you my story and make the connection]-- but what i want to say now is that I've just been taken OFF Irintecon because I was also having a hell of a time with it. I was so curious as to how you were going to fare. Mostly, though I am having a terrible time with the steroid-- Decadron-- are you on that too? Had no problem with it when I had it last year to counter side effects of a different chemo but this year, in combination with a new chemo, is a whole other story. I promise I will write you everything very soon-- and then will use these comments maybe? to share with others too. I haven't reached out before to anyone else with this cancer but I think I'm ready now and you are the first!! Next will be the boards on the Cholangiocarinoma Foundation website...... Will try to write this week!! I'll put From Kathie, a fellow cc'er, in the subject line so you'll know it's not spam. Hang in; this cancer is so tough but whatever life we can ransom back from it is so precious........

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