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March 27, 2013 at 5:45 pm #21137
I received my 2 month oncologist report today after PET and brain MRI. Two brain tumors had been radiated in December. One has disappeared. The other has grown larger. He suspects it is the result of the treatment, not tumor growth, but intends to have it surgically removed if it has not made its intentions clear in the next two months. The tumor found in the left buttock near the glut on the last PET is about the same. This time the decision is to remove it surgically. Still probably too small to get a proper genetic readout from. Only thing I know about genes now is that I am BRAF negative.
He thinks the signs of no real progression suggests the ipi has worked. But he told me that the problem lying in the way of a reinduction, which he would suggest, nothing changing, in two months, is the unwillingness of Medicare to pay for such reinductions and the unwillingness of the hospital to eat the bill. Has anyone had any experience with this? I gather other insurance may handle reinduction costs but not Medicare.March 27, 2013 at 10:23 pm #59817
Sounds like a pretty good report. I believe that you might want to enroll in a PD1 trial. Many are opening in all parts of the country. You would be considered IPI refractory although the doc thinks it is working, there has been progression. I think that Medicare would have to be appealed in their decision otherwise. Let me check for a PD1 trial for you. Are you having the brain met radiated?March 28, 2013 at 9:19 am #59818 I would not think of the cancer as being refractory, but the tumor in my buttock did not appear until the PET scan immediately after finishing the IPI, so I guess that would do the trick. As for the brain tumor, it was about .5 at the time of siting and now is about .9. However, the doctors still believe that what they are seeing is not really the tumor but the impact of the SRS and the ipi. Not sure, though. That’s why if it does not resolve, removal will be done in two months. The procedure would be craniotomy, not SRS.
Thank you for pursuing the PD1 information for me. I would move in that direction, I think, after the next set of scans in late May.March 28, 2013 at 6:02 pm #59819AnonymousGuest
Actually Frank, I’d leverage your “down time” to move in the PD1 direction right now and not wait. Getting the first appointment plus the review and selection process can take a month or two.
As you know buddy, stay ahead of this crap.
JeffMarch 29, 2013 at 9:34 am #59820
Thanks so much for your always sage advice. You’ve got me thinking now, which at 5:31 a.m., is no mean feat. After my butt met (anyone seen that designation on the forum before?) is removed next month, I won’t have any measurable disease, except, of course, for one possible brain met, which would probably exclude me from many trials. So would pursuing a trial now be a wild goose chase?March 29, 2013 at 12:49 pm #59821
No! For the PD1 you need a “fresh” biopsy to start the trial. So you should try entering the trial now for that biopsy before they remove the butt met. But if you have a current brain met you may be excluded. And we need to find a trial that is nearby you which may not be so easy either. So I’m happy to help you research this. When will you know about the brain met issues?March 29, 2013 at 3:52 pm #59822AnonymousGuest Boom.
Keep at it Frank. Go with the assumption that the brain met issue will be resolved favorably while making contact with a trial center now to make sure that when it is resolved you can slide right into a trial. That’s what Rachel and I did and Sarah Cannon, Karmonos, and MSK were very supportive, checking in on her status and telling us what slots were available and when. The trouble with Rachel’s case was that the disease was very aggressive and just too far ahead of us in the race, even after the brain mets had been dealt with.
You’re a racer Frank and putting some distance between you and this disease. Stay out in front and increase that lead my friend.
JeffMarch 30, 2013 at 9:47 am #59823
The timetable on the brain met is to have another brain MRI in late May. As I mentioned, my clinical oncologist and the radiation oncologist both think what they are seeing is not an active tumor but the effect of the treatments, ipi and radiation. But they are not certain enough to preclude a craniotomy if it has not begun to definitively resolve by May. Right now it is a 9mm area that is being looked at, while the tumor when radiated was about 5mm.
The butt met is less than 1 centimeter, so not measurable from what I think the standards are. It is also buried about as deep as one can get. My U. of M. oncologists believe it is a melanoma. Dr. Chapman at MSK on seeing the initial PET scan of it in late January was less certain. I thought before the meeting Wednesday that the docs might vote to leave it there for possible entree to an anti-PD1 trial or to use it as a measure of ipi effectiveness, but they gave a strong argument for getting to it now even though it is probably too small to be used for the clinical trial genome sequencing that U of M is involved in.
I will be seeing an onco surgeon on May 10. I’d be interested if Catherine could help locate an anti PD1 trial in the Michigan neighborhood before then that I could add to my consideration. I certainly very much appreciate her and Jeff’s sollicitude and encouragement.March 30, 2013 at 12:22 pm #59824
There are no trials in the state of Michigan unfortunately. If you could email me states nearby you might consider, I will let you know what is on the list. Illinois has a few for instance. Sorry about that. I guess I am wondering why the doctors are so unsure about the brain met. Can you get another opinion at Sloan? Sloan has the PD1 trial too.
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