mariajgb
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Thank you both so much for your responses. It was posts on the message board that convinced me she shouldn’t be suffering the way she is. I’ll have her seek out another oncologist when she is able. The emergency room and a pain management doctor are both good ideas, I called a pain management doctor and we’re going to get her set up with an appointment, and I called her oncologist myself to beg him to prescribe her something else. If he doesn’t respond, I’ll take her to the E.R.
Mom’s on Medicare/Medicaid, and she’s about to try Keytruda, so we’re not ready for hospice pain management yet. It feels like we’re having to muddle about on our own with very little guidance or support, which is so frustrating. Thank you very much for your responses, they helped give me direction about where to go.
Julie,
I believe the retail cost of the liquid biopsy was similar to what Foundation One was charging, I believe they said $5,000.
My mom got her results back and it looks like her main mutations are ARID1A, IDH1, TP53, NF1 and CCNE amplification. Unfortunately it looks like she hasn’t developed any new mutations and that doesn’t leave us with many good options for new clinical trials since we already knew about the IDH1 mutation from her solid tumor biopsy. It does help me trust the accuracy of the new liquid tests, though, since the test found similar mutations to her previous solid tumor biopsy from Foundation One.
Not sure where else to post this, but it was helpful to me:
When I contacted the TAPUR trial about enrolling my mother, they recommended that she get a liquid biopsy, since the tumor tissue from her last biopsy is over two years old, and she doesn’t have a good option for a new solid tumor biopsy. I’d been interested in liquid biopsies but was struggling to find a company that was currently doing it and they pointed me to Guardant360. Supposedly liquid biopsies have some advantages solid tumor biopsies don’t (simple blood draw, two weeks for results, don’t have to deal with heterogenous tumor tissue- should get full range of potential mutations). Guardant360 has a financial aid program and for Medicare patients they won’t bill the patient, even if Medicare won’t pay. We’re still waiting for the results from Guardant but wanted to pass the information along to anyone who might not have an easy biopsy location but wants mutation testing.
I’m wondering if anyone knows of specific doctors willing to prescribe Keytruda off label? My mother’s oncologist in Seattle is unwilling because “there’s not enough evidence of efficacy at this time”- in the meantime I cannot find an open trial for keytruda enrolling cholangio patients right now, and I’m panicking a little. We don’t have time to wait 3 or more months for more trials to open. Any information anyone could provide would be appreciated!
Marion,
I”m looking at trying to get my mother prescribed Keytruda off-label, as it seems that the pulmonary embolisms disqualify her from every trial I’ve looked at her going on next
For anyone who is interested, it looks like UCSF has a keytruda trial specifically for cholangiocarcinoma patients that’s enrolling now:
https://clinicaltrials.gov/ct2/show/NCT02703714
Bostonguy,
I do know that the pleural effusions did increase as a result of AG-120, just because her breathing improved very soon after her going off the trial. As for the pulmonary embolisms, though, you’re right, might just be a side effect of the cancer. Thanks for the info, wish the best for your mom.
My mother was enrolled in AG-120 at UT Southwestern so i thought i’d share her experience in case it’s helpful to anyone.
She was only on the drug for two months, during which time her primary side effects were increased fluid build-up around her lungs, and fatigue. Other than that she tolerated the drug fairly well. However at her 2 month scan we found that while it seemed to keep some of the tumors in her liver stable, a lymph node in her chest grew. In addition, she had two pulmonary embolisms in her lungs and evidence of mild arterial enlargement of her heart. The trial coordinators are denying that the pulmonary embolisms and the arterial enlargement were caused by the study (although she’s never had anything like that before, I supposed it could be a coincidence?). Because of the embolisms and the growth in the lymph node she was taken off the study.
Now, the biopsy that was used to test for her eligibility for the study was over two years old, so it’s possible her tumors have mutated in that time and that’s part of the reason we didn’t have great results on the study. Good luck to everyone else participating!
Steven,
I’m so sorry about your mom. Thank you for taking the time to share the outcome of her time on keytruda. Thinking of you.
Maria
Oh, ok, great. From the email I was worried it would be postponed for much longer. I’m glad to hear it should be back up and running soon! Thank you for reaching out to find the information.
I’m not sure if this has been posted elsewhere but I wanted to update that we’ve recently heard that this trial is on hold. The nurse at NIH we were corresponding with (we’d already had bloodwork done and were preparing to go for our first visit) emailed us with the information. She said the trial was “on hold as we make some updates and actively look for more space for our labs” and that they were uncertain as to when it would reopen.
Has anyone else heard similarly? Any idea what’s going on? We were very disappointed to see a potential avenue for treatment closed down.
Marion,
Thank you SO SO much. I appreciate this more than i can say. Our oncologist had told us about the MATCH trial but just that it had been postponed– i didn’t even know the name. It’s so good to have some more information to look into, and I had absolutely no idea about TAPUR. Looking into clinical trials online has been overwhelming, especially since we are so far away from all of them, but you’ve really given me some excellent leads. Thank you from the bottom of my heart for your kindness to me and everyone on this message board.
Marion,
Thank you so much for your reply and for passing along that information. I will look into those studies. I appreciate it!
