I had a gross total resection
of a grade 2 glioma. Now I have 2 options. “Aggressive treatment”, chemo
radiation followed by chemo or to “watch and wait”. The tumor is IDH1 mutated
but not MGMT mutated.
My NO says they always to Temodar with radiation.My feeling is with the threat of hypermutation and without the MGMT mutation I’d be better off deferring treatment, though the radiation might kill remaining cells.
My NO thinks the best course is to wait since it’s likely to take years to regrow at which time new treatments will be available. Though I think he's overly optimistic. The tumor was partially resected in 2005, fully resected in 2011 and fully resected again this year after a 2nd recurrence.
Any thoughts on whether to be aggressive or to watch and wait would be appreciated. I’m also going to find another NO for a 2nd opinion.
Hey, Larry,
ReplyDeleteIt's nice to hear of someone who has options. The terminology for MGMT is, I believe, "methylated" or "unmethylated." Not that it matters for the advice: 2nd opinion from a highly-qualified specialist. The specialists needs to see the histopathology, the films, the op notes, all the relevant studies.
Maybe if you do control MRIs fairly often (each 3 or 4 months) you could avoid going through radiation and chemo, at least until the first signal of grown. You´ve already seen that the tumor seems to be kind of a "slow grower", since it´s been about 5-6 years between your surgeries. I do believe that in 5 years there will be better technology available to treat brain tumors. Just my 2 cents. Best luck!
ReplyDeleteIf you look at the very bottom right-hand corner of this page, you'll see a friend blog called "Toom-ah? What Stinkin' Toom-ah!" The writer of that blog is a lovely woman named Jessica who essentially was faced with your decision.
ReplyDeleteI *believe* she chose only surgery and declined radiation and chemo in lieu of other treatment options. You can read her story there and that might help you make a decision.
We are in a similar boat. My wife had a partial resection of a grade 2, IDH1 mutated astrocytoma last year. We got multiple opinions and they were all different. No one really knows for sure what is the "best" approach. The phase 3 (randomized) studies they do have tell them that: 1) doing radiation right away vs. doing it at the time of recurrence doesn't make any difference in terms of survival. 2) PCV + radiation at the same time is vastly superior to only radiation in terms of survival (the so called RTOG9802 trial---it's called 98, because the study started in 1998. Only now they got results. It takes a long time for the studies on these low grade tumors to complete which is why almost nobody does them.)
ReplyDeleteSome doctors recommend doing Temodar + radiation right away (the opinion we got from Stanford) with reasoning that Temodar should work just as well if not better than PCV (although there's no trial proving that for low grades, they extrapolate from high-grade tumor studies) and it's a lot less toxic, plus RTOG9802 tells them to combine chemotherapy with radiation. However, they have no basis for recommending it right away---there's no evidence that it's beneficial to do that.
So we chose wait-and-watch (at UCSF), doing MRIs every ~3 months. So far, the tumor has been stable (9 months since the surgery).
If the time comes to do the radiation (+ chemotherapy), we'll likely go for protons. There is some early evidence that it causes less toxicity long term than the standard radiation.
Good luck!
This comment has been removed by a blog administrator.
ReplyDelete