January 16, 2016 at 3:19 pm #12046jacdollMember
my original introduction post:jacdoll wrote:hello everyone,
first I want to say thank you:
1) that this website exists
2) that an entire foundation for this terrible and rare cancer exists in the US
3) to everyone who posts with such valuable information
I have been digesting information for the last month and a half about this cancer.
I’m a newbie here to the boards and myhusband, who is 47 years old, has the unfortunate diagnosis of inoperable intrahepatic cholangiocarcinoma, stage 4B. he was diagnosed roughly one month ago and was due to start the standard chemo (gem/cis) Monday the 18th (so late simply due to the holidays and also due to our own shock/denial/indecision about next steps + 3rd and 4th opinions received).
however, we got word from a clinical trial just yesterday that my husband may be eligible even though he hasn’t started or tried any chemo yet. I understand that for some chemo works really well; for others, not so much.
my husband, Tom, has the FGFR2 gene mutation, or over-expressed FGFR2. It just so happens there is a clinical trial about 4 hours away from where we live that is studying an FGFR2 inhibitor drug – phase II trial. There is one CC patient who started out on the trial 22 months ago and is still alive today, still on the drug. this seems very promising to us and even though we’ve been told to go ahead and start chemotherapy, what IF Tom gets into this trial and could begin taking a drug that would definitely stop tumor growth and possibly support tumor angiogenesis? could we really be that lucky?
I don’t know and it’s a tough call to make (and I’ve seen here that a lot of people have had to make some tough decisions with this cancer).
I wanted to know if anyone has any experience with this gene mutation type, a tyrosine kinase inhibitor drug and/or chemotherapy in those with the FGFR2 over-expressed gene.
I’ve been trying to gather scientific data so that I can compare statistics for those who have done chemo and those who have undergone clinical trials and it’s been difficult so I thought I would throw this question out there:
if you were Tom, which would you choose? because they, at this time, cannot be taken at the same time:
1) standard 6 courses of chemotherapy (gemcitabine and cisplatin)
2) a tyrosine kinase inhibitor drug in escalating doses with NO chemotherapy?
I would greatly appreciate some responses and maybe someone can help us with this difficult decision or at least sway us in one direction or another. Honestly, we are just so scared and don’t know what to do at this time. Obviously no one wants to make the wrong choice for their loved one or even with their loved one. If it was just me alone, I would do the trial. That’s my personal feeling and preference but I wouldn’t be able to live with myself if it didn’t work for Tom.
From Marionmarions wrote:Dear Ashley….welcome and thanks for joining in. Please know that all of us are here to help by sharing information known to us however; everything must be verified by a qualified healthcare professional.
Regarding the choice of gem/cis vs. clinical trial: the majority of research studies require prior failing of gem/cis or perhaps gemzar alone or gemzar in combination with another drug.
Has your husband received eligibility confirmation for the by you mentioned clinical research study? Would you please share with us the clinicaltrials.gov identification number?
From me again:jacdoll wrote:Hi Marion,
Hello again and thank you.
Yes, I completely understand that everyone here is sharing information per their own experiences and I didn’t mean to pose my question in a way that meant I was looking for medical advice.
I think it’s more of a personal question, kind of a “what would you do” question to anyone who wants to share.
To answer your question, we are actually going in a few days to be screened for final eligibility, but per an initial review of his medical records we were told that he is a candidate. We were told that even though the trial inclusion criteria says you must have failed prior conventional treatment, there has been a change to the protocol that wasn’t also changed in the information per this link: https://clinicaltrials.gov/ct2/show/NCT01752920?term=fgfr2&rank=4
Trial # is NCT01752920
They are doing scans in a couple of days and we’ll know if he has been accepted at that time. Then, if so, the trial could begin a week later.
I want to believe that this is not too good to be true.
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