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Thank you Melinda for your response! I have such deep respect for your battle with this horrible cancer. You’re beating the odds and that is amazing. Such inspiration to me considering having only been married 2 years (just!) and not wanting to lose my husband so quickly. I’m so thankful for you and so many others just like you that contribute your experiences and opinions to this board.
Yesterday we went to Atlanta to Emory University Hospital for Tom to be screened for the ARQ087 trial. Everything went well and we should know something tomorrow or Monday. If he is approved, then we’re moving forward with it for sure.
There is always a chance that there will be an initial response to the drug and then the cancer will find another pathway or gene to grow tumors. That was hard to hear and not something I had considered before. But if it prolongs his life and helps restage this disease, that would be wonderful. We were told that the trial itself, if he gets in, opens him up to other immunotherapy choices whereas that was never discussed with his primary oncologist (because chemo is the firstline, standard treatment and it is a repeat business – that part makes me so angry that healthcare hasn’t advanced more).
Emory Cancer Institute was PACKED yesterday. I looked around and wondered how many people were there for regular treatments vs. how many were there for trial appointments and trial screening. They do a ton of trials and I am so thankful for that + the participants.
A nurse yesterday said it was a miracle we got in when we did for Tom’s new CT scans because typically there is a 6 week wait time. If Tom gets into this trial, we will be so happy to help pave the way to new standard treatment options. I still can’t believe how much research, work and time an individual has to put in to find and then get accepted into trials.
I’m going to do some more reading on this board under the clinical trials section as I’m very anxious to see how people have responded within their individual situations.
Thank you, again, everyone. I appreciate any and all responses!
Yes, thank you Marion.
To clarify, the physicians overseeing the trial have approved Tom despite the initial inclusion criteria. Thy did not update the trial on clinical trials.gov for some reason. My guess is they really need participants and if we do this we are taking a risk.
Tom will be getting a final screen on Wednesday and we will know for sure soon if he has been accepted. No it’s not standard care but there’s a chance it could really work and we are willing to take that chance. If Tom is not accepted then it’s off to chemo we go.
Would love to hear from anyone in clinical trials for sure! I read a story on here yesterday about a few ladies in a similar trial at MD Anderson and it appears things are going very well for them which is very exciting!
I’m also posing the question about these types of gene inhibitor drugs. Are they the future treatment for this cancer? Anyone have any thoughts?
Thank you in advance!
Hi Lainy – and thank you! I wondered if I had posted in the wrong place and I guess I did! I appreciate your help and ongoing support for so many members of this board. It’s an amazing outlet of compassion, information and support. Finding out you or a loved one has this rare cancer (now seeming not so rare to me…..) is utterly devastating. It has been hard getting the help we need, especially with a stage IV diagnosis…. We live in Charlotte, NC and have been to Levine Cancer Institute (where we saw a very dismal doctor who gave us NO hope); my husband is currently at Oncology Specialists in Charlotte; we’ve been to Duke University and sent his FoundationOne results to the dr as requested but no reply yet. Finally, we’re going to Emory University near Atlanta to try to get into this trial. If it doesn’t work out, we’ll be back on the chemo wagon with so many others. It feels like a risk no matter what you do, but I know it’s time to do SOMETHING as, you’re right, it’s been strange with the diagnosis. Lots of red tape to cross through for sure.
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.
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.