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June 1, 2013 at 12:40 am #21325dkmcParticipant
Well just back from Don’s colonoscopy & even though oncologist after reviewing PET was pretty hopeful would not be melanoma…it is back. He had 14 months NED after IPI. He has one 3-4 cm ulcerated lesion in his descending colon. Don said ya know its pretty bad when you have gotten used to someone saying you have cancer. Anyway doctor said it is either melanoma or colon cancer. Path report should be back Monday. Anyway he marked it so that should help the surgeon. I was wondering & of coarse will be having another conversation with oncologist but I would think since he was a complete responder to IPI that he should get that also, but I don’t know if you have to have tumor present to get it again. Not comfortable leaving an already ulcerated lesion in his colon while we wait for months of IPI treatment. Any thoughts? KarenJune 1, 2013 at 11:59 am #61007Catherine PooleKeymaster I would move onto a PD1 trial. There are many and it has a higher rate of response than IPI. They couldn’t remove the tumor in the colon? I’m all for surgery when it is feasible.June 1, 2013 at 6:12 pm #61008dkmcParticipant Yes- He will have colon resection to remove tumor. I was wondering if after surgery – again he will be NED-can you get a systemic treatment like IPI or anti PD1? Probably not…I just need to be grateful it can be removed. Thanks, KarenJune 1, 2013 at 6:28 pm #61009BrendanParticipant I had a lung met removed through surgery in 2011. I was NED as a result of surgery and then I had ipi (all four bags) after my body recovered from surgery. Good luck.June 1, 2013 at 8:00 pm #61010Catherine PooleKeymaster There is no reason why he couldn’t have IPI as far as I know. For PD1 he will need a tumor met at the start of the trial. I would have them hold on to the tumor that is removed. There are some other trials, phase 1 and on you should explore as well.June 2, 2013 at 7:11 pm #61011BNP68Participant Can anyone else can confirm whether IPI is available for NED. My understanding is that it is not but I could be wrong (I hope I’m wrong). I’m in the same boat as Don. I just had 4 tumors and 19 positive lymph nodes resected from my small intestines two weeks ago. Fortunately I’m back to NED following the surgery but unfortunately I’m finding that access to some of these great new treatments isn’t available because of my NED status. I pulled about a dozen or so trials off of clinicaltrials.gov that I may be eligible for and have narrowed it down to a couple vaccine trials at UVA and Moffitt. I’ll be traveling to both sites here in the next couple weeks and will be sure to ask them about every option that I might have available.
BrianJune 2, 2013 at 7:57 pm #61012AnonymousGuest
You are still considered Stage IV so you should be able to get IPI or any other therapy approved for Stage IV, at least that’s my understanding.
Many trials can get by on frozen samples taken from previous resections so don’t let the fact that you’re NED now stop you from checking out PD-1 for example. Also check out the new smart-bomb chemos. Don’t assume you don’t qualify, let the trial staff tell you that.
Best to keep this crap knocked down with whatever means can be made available to you.
Best of luck, congrats on NED and let us know what you find!
JeffJune 2, 2013 at 9:00 pm #61013Celeste MorrisParticipant
For Don and Karen…Maybe Brian. Once your tumor is removed…you are NED. And that is WONDERFUL!!! But, once you are Stage IV, despite being NED, it is wise not to rest on your laurels. However, as Dr. Weber put it to me…2 1/2 years ago…once NED…you are in melanoma-never-land. Meaning….while Ipi is certainly on the market and can be prescribed for Stage IV melanoma patients. Insurance companies can refuse to pay for it, since as an NED patient it is considered adjuvant care….rather than a treatment. The same for getting into some trials. Many trials for anti-PD1 require not just tumor samples for entry…but MEASURABLE DISEASE. When that is a requirement, if you have tumors that are too small to meet the rules, or no disease at all, it renders you ineligible for the trial. A real catch 22….or melanoma-never-land. I was lucky to get into an anti-PD1 trial at Moffitt with Weber for NED patients. We did better than was expected and the results of my cohort are to be presented at ASCO. The last time I was in Tampa, Weber stated that he was going to work on getting a Phase II trial with anti-PD1 as an adjuvant approved…but I don’t know what has come of that so far. I agree with Catherine. Getting rid of tumors is always a good thing. But, we were almost….almost….wishing I still had mine when we were trying to find a trial for me.
Wishing you all the very best, cJune 2, 2013 at 9:03 pm #61014buffcodyParticipant
My personal experience is there is no difficulty with getting IPI NED if you are Stage IV. As for reinduction when NED, my oncologist has insurance worries but no one at the University of Michigan has been denied even if the university has joined in on payment. But I do not claim to know any details of the behind the scenes financing.
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