Checking in and IDH1 Mutation
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I’ve been told that surgery is not an option because of the distant metastases and the size of my liver tumor (it started about 18 cm but never got below 10 cm). Plus I was told no doctor would prescribe surgery for me because it was too risky and might actually spread things faster by perturbing my system.
My onc is out of options when the FOLFOX6 no longer works. She referred me to another onc in a different hospital system who has different ideas. Still does not seem aggressive about going into treatment areas he is not familiar with, but at least has some other treatments in mind plus a clinical trial his system is conducting. I will get more details when needed.
I’m surprised MDA won’t move up your visit. Have you had your liver panel redone recently? I think MDA will want that info but will also run their own tests when you get there.
What trials did FoundationOne suggest? Those are the ones to investigate, not mine. I just wanted to share my results.
Check your weapons and spells and hang tough.
Duke
MD Anderson hasn’t told me to start trials yet. They just got the Foundation testing done so that I had options when it might be time for that. I just got the results yesterday by email and wont go over them with my onc until April. You were diagnosed almost exactly a year before me. You have similar metastasis to me. It is my understanding that you are still not eligible for surgery. Would you not consider a trial at this point? What are your next steps?
Great to hear from you again.
My onc stopped the cis/gem after one round and went to carbo/gem. Stayed on that eight rounds and all seemed good to me but her script said to stop after eight because of possible kidney damage (not supported by any test results I had) and went to gem only for 10 rounds which eventually showed no effect. Then to FOLFOX6 – just completed fourth round. Getting a CT scan next week to see if it is working.
My two cents: by all means listen to MDA. Some treatment options prevent participation in a certain trial, but I don’t remember anything. Some also have criteria about women of child bearing age. And, unfortunately, many have requirements that your tumors are growing. I would push hard to look at other options before going to a trail. But MDA is one of the best places to be. Enthusiasm is no substitute for experience.
My FoundationOne report also showed IDH1 R132L. They listed the following trials:
NCT01534598,
NCT00748553
NCT01537744
NCT02073994which are mainly Phase 1. Only one, the last one, targeted IDH1. Follow this link.
https://clinicaltrials.gov/ct2/show/NCT02073994
Good luck.
Duke
Hey guys!
Haven’t been over here in a while! Hope you are all getting good news these days.
Since being diagnosed in July/14 I was on Cis/Gem. Last month had a check up and CT and it showed significant shrinkage of tumors but my kidneys were starting to show some signs of dmg (increasing creatinine levels). So they took me off of Cis for a while to be safe. They also did a liver biopsy to send to Foundation One at this check up as well.
Got the results back from foundation one yesterday. The big find was the IDH1 mutation. I know some of you may be familiar with this. Has anyone chosen a trial to go with for this mutation yet? Are you considering a trial?
I searched IDH1 mutation on this site and there are a few posts but nothing from anyone who has actually tried it (unless my initial scan of the posts was wrong).
I don’t meet with my onc at MD Anderson until April, but I’m gonna give this packet of info they sent me to my onc here and see if he has any recommendations.
I guess I just feel like it’s time to start trials. If I’m gonna do it, I might as well get on it. How did those of you who chose trials make that choice? How early in your treatment did you switch to a trial rather than the standard Cis/Gem or Carb/Gem protocol, Folfox, etc?
Thanks!
Tabytha
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