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August 7, 2012 at 12:41 pm #20532
I am in a limbo period while they wait for my zapped brain to “calm down”. I will have scans in a month. At that time my doctor wanted me to think about IL-2 or TIL. He was not optimistic that I would qualify for a PD-1 trial because of the lack of trials and seats on trial I believe he thinks any brain involvement even if it has been treated will make me not a good candidate (I do believe he also is fearful more brain involvement will show up next scan). That is basically my short list – IL-2 and TIL. I think if there is any brain involvement in next scans IL-2 and TIL are no longer an option?
I was told ippi reinduction would be tough to push for as I was a partial responder with most of my tumors with exception of tumor on my shoulder whcih continued to grow quickly. He did not think I would be able to do BRAF MEK trial I dont know if it was because of my mixed response in past? . I was a partial responder to BRAF but after 3 months grew 3 very agressive tumors in intestines and had to have surgery to remove them.
so… I am hoping people might have thoughts on what else I could research while I sit here waiting for next scans. I am currently having radiation on my shoulder just to get that tumor under control. I will say I am getting scared because I have developed a new painful tumor on my back right on the bone that wasnt there before. It is very scary to be handed a short list as you all know.
thank you for your help and time
laurie from maine
ps – joanathan how are you doing with your radiation? I hope this week it is under better control for you?August 8, 2012 at 12:26 am #55789JonathanParticipant
Sorry to hear about the new pain – I can tolerate a lot of nasty news, but I find pain demoralizing.
I’m wondering if there are any slots available to you in the Boston area for anti-PD1, anti-PDL-1, or some other trial, since Ipi seems to be out at this point. Maine is big, but perhaps Boston is not out of the question (maybe you’re in Portland?), and your oncologist might help with a referral. Or maybe just call down to Mass General or to Dana Farber oncology. I just recalled that I read that the original Jimmy (of the Jimmy Fund that provided funding to make Dana Farber a big cancer center) was from a small town in Maine, still alive and kicking after these many decades….
I’m actually doing pretty well right now, a day after my last radiation on my chest. A little tired, but the pericarditis and fever have gone (though I’m warned that the radiation could set off pericarditis in the next week or two). Just hoping nothing new develops. I think I may have mentioned that the radiation oncologist thought the fever might have been an indication of an immune response, triggered by the radiation. I can hope for that…
JonathanAugust 8, 2012 at 2:32 pm #55790
I don’t know what BRAF you were doing, but the GSK BRAF and MEK are up for approval by FDA, so if that hurries along you can try that without a trial. I don’t think IL2/or TIL will be helpful for brain mets and may exclude you for them. I’m pretty sure the NCI trial would exclude you, but Moffit and MD Anderson may accept you for TIL. I agree with Jonathan about the PD1 slots, it is always worth a call and maybe getting put on a list. Sorry our options aren’t greater, but hopefully that will improve.August 8, 2012 at 6:15 pm #55791
Thank you Jonathan and Catherine,
I believe that until my scans show my brain is under control I do not qualify for PD-1 slots. I have scans again in sept. I am trying to keep up on upcoming PD-1 slots and I believe thru your site(thank you catherine) Bristol Myers is opening a trial up this fall? My doctor had warned me that with any brain involvement past or present I may move down in the list of desireable candidates and since there will be few slots he wanted me to think about other options.
I am hopeful no new brain involvement which will give me the option for IL2 or TIL., or PD-1 if I can qualify.
BRAF MEK combo might be an option for me. I did Zelboraf for 3 months, I was responding well but then developed 3 very agressive tumors in my intestines and had to have surgery. I would hope the answer for me would be the addition of MEK to BRAF or someone mentioned there might be a BRAF temodar combo?
I do live in Portland, but receive all my care at MAss General. I love my doctor and the people that work for him, they have gone above and beyond for me and I am truly thankful.
Jonathan I am glad this week is better than last, I hope you are right that the fever is a sign of your body responding.
Thank you both!
Laurie from maineAugust 8, 2012 at 6:42 pm #55792
Temodar, unfortunately, is a more expensive type of dacarbazine and really gets no response with melanoma. A different BRAf drug may help you, or the combination of Braf and MEK. I’m not sure which TIL trial they are suggesting, but I believe it is only offered at NCI, Moffitt and MDA. NCI is very strict in who they allow into their trial. Are you seeing Dr. Flaherty at MAss General? He is very good and co-director of our Scientific Board here.August 8, 2012 at 11:58 pm #55793 My doctor is Dr Lawrence, I believe he and Dr Flaherty consult with each other on their patients. I have heard great things about Dr Flaherty
Thank you for the information on dacarbazine I didnt know much about it. It helps so much as I try to research what options I might have once my scans are done in Sept.
I believe that NIH was where my doctor was thinking I should look into TIL. I did read your notes to others about how strict NIH is, I agree I am not sure I would qualify.
Thank you again for your help, I really appreciate it.
LaurieAugust 9, 2012 at 11:28 am #55794
It is always good to line up a plan no matter the scan results, good for you. Let us know how things go!
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