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March 24, 2014 at 2:32 pm #21892Sue_forMikeParticipant
Although I’ve been reading this forum for awhile, this is my first post.
My husband has recently been disqualified from a clinical trial (LGX and LEE) due to ‘liver irritation indicators’. I am awaiting return call from doctor to clarify the issue, and the options. However, the recommendation mentioned was chemo + radiation to deal with a recently found brain met.
I’m confused about chemo – doctor says it can cause significant tumor shrinkage, although I’ve certainly read here that it doesn’t do much. Can anyone with experience comment?
As for the brain met, is gamma knife the same as stereotactic radiation? What questions should I ask?
I really think the doctor is trying to buy some time while waiting for PD-1 EAP or approval. My husband’s disease is advanced, with tumors in quite a few places. He did well on Zelboraf till it stopped working, and got no apparent response from Ipi. He is going on sheer will, I think, at this point.
Thank you in advance.
SueMarch 24, 2014 at 6:48 pm #63937buffcodyParticipant
An answer to one of your questions. Gamma knife is one kind of stereotactic radiation (SRS). A very good one from what I have read. I had two brain tumors radiated (along with ipi) 16 months ago (not a gamma knife procedure). Glad I had it done, though the radiation of one was not perfect and left me with necrosis that I had to have operated on 8 months ago. This does occur at times but I don’t believe frequently. Still worth it.March 24, 2014 at 7:59 pm #63938MathewRParticipant Gamma knife is a form of SRS and, for me, was an easy procedure for a small brain met (less than 5mm). I have no experience with chemo but I recall reading posts from others on the use of Temador to treat brain mets.March 24, 2014 at 9:59 pm #63939VioletaParticipant We were in a kind of similar situation couple months ago: my sister had 10 months zelboraf, then Ipilimumab + tumor(upper arm) Radiotherapy and Gamma knife (for a brain tumor). Zelboraf, Radiotherapy and Gamma knife have worked good for her. Ipilimumab did not work.
Her melanoma progressed fast and she went in a critical phase in November last year, just before PD1 clinical trial. We received the following advices:
– first: still to go for anti Pd1 with hope of longer term stabilization;
– second: chemotherapy, about this doctor said there is a small chance to respond to it, but ”still is not zero” (however the small number of patients who respond to chemotherapy will get a tumor reduction);
– third: to re -initiate zelboraf treatment (she was 4 months after the first zelboraf treatment).
I know this info is not very helpful since you cannot go right now for an anti-PD 1trial, but just to give you an idea about our experience.
my best wishes for you.March 25, 2014 at 1:09 am #63940Sue_forMikeParticipant
Violeta, that is interesting to see the advice your sister got. Are you saying she had done Zelboraf and stopped, then one option was to restart? If so, had she stopped Zelboraf because disease had progressed?
Thanks to all.
SueMarch 25, 2014 at 9:46 am #63941VioletaParticipant
Yes Sue. She had zelboraf from september 2012-jully 2013. In July 2013 she stopped zelboraf because her tumors got resistant. At the end of November 2013, after the failure on IPI, her melanoma took over. I wrote my self to two doctors (in Netherlands and Germany)who knew her case. Indeed in that moment the options were : 1) antiPD1, 2)chemo and 3) zelboraf rechallenge. (Edit: At the end she had the luck to be enrolled in trial on PD1 arm)
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