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- This topic has 4 replies, 4 voices, and was last updated 5 years, 2 months ago by
Mark_DC.
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- February 23, 2019 at 3:51 pm
Dr. Sharfman called yesterday after he had reviewed the report on my MRI. He asked me if I had talked to my radiation oncologist. I replied that yes, I had talked to her on Wednesday. He wanted to know what she said.
I told him that she said she "didn't know what to make of my MRI." The radiologist identified a potential new lesion near the right frontal horn. Dr. Hung, the radiation oncologist, said she could see what he was talking about, and it was very small. It had exhibited a "subtle change" in the radiologist's words, since the MRI I had done pre-radiation in January.
Dr. Sharfman told me he wants to talk to the radiologist to see whether "he really sees anything there" that he believes could be more cancer. If I understood him right he is hoping he can "fudge" me into the trial. But if the radiologist is adamant that something new is going on, I'll have to go on Temodar. If that turns out to be the case maybe I'll get another shot at the trial a little farther down the line.
Dr. Sharfman said he has been having good luck with Temodar, especially with patients who have received prior immunotherapy, in whom he said it is about 20% more effective. Does anybody here have any experience with taking Temodar?
I hope you all have a great weekend.
-Bill
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- February 23, 2019 at 4:36 pm
I knew that Dr Sharfman would be able to put your mind at ease and figure something out.
I recall reading about Temodar on this site and there have been some success stories but that was a few years ago before the days of Yervoy, Zelboraf, Ketruda, et al. So, Dr Sharfman's point about Temodar being more effective on patients who have received prior immunotherapy makes sense.
However, Ed and Celeste are more in the loop about these things and can give you a better answer.
Keeping my fingers crossed for you!
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- February 23, 2019 at 5:07 pm
Sorry, Bill. And thanks for the vote of confidence, Linny, but I don't have my fingers on any current data re temodar at this moment….but I bet Ed can pull an informative video out of his wonderful cyber hat!!!
Anyhow, I'm going to hang on to the "fudging" idea. That is how I got into my nivo trial back in 2010. After having had one brain met zapped and the right upper lobe of my lung removed due to melanoma in April of that year, by the time of the scans for entry into my trial in December I had another brain met!!! Which was disqualifying for entry. However, I figure it all went down something like this:
From 12/6/2010: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/12/well-that-sucks.html
From a story I wrote in 2016: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/and-then-theres-me.html there is this bit referencing the first time we met Weber and agreed to take part in his study, and he agreed to let me in it!!!!
At our visit, there was much discussion of my past and future. A review of my latest scans – Was that really a brain met? If so, it would preclude my participation in the NED arm of the trial, yet not be sufficient tumor burden to allow my enrollment in the active disease arm. Here's how things went as I wrote at the time:
'Weber pops back in to tell us that he doesn't really know that it is a met at all. He is going to get the other folks to give their opinion. On his return, he says that the other radiologist/neuro people couldn't definitively say that the lesion in question was a met. He tells us that to his mind, I have "minimal residual disease" and therefore qualify for his study should I wish to participate in it. I figure the conversation went something like this:
Weber = Do you think this lesion is a met?
Neuro/radiologist = Well, given her history, probably.
Weber = Yes, but, on its own. Can you tell me that this is definitely a met?
Neuro/radiologist = Well, not definitely.'Weber dubbed my situation as one of being in "Melanoma Neverland"! Here's the post that tells the entire story of that visit:
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/12/melanoma-neverland.html
I agreed to participate in the trial. As Brent put it, "We are in Melanoma Neverland, but this may be a door out." We rushed frantically to sign papers, complete an EKG, various labs and other madness…before catching our return flight to Atlanta. I started the first arm of that phase 1 trial, as patient #9 (or #3, if you discount those who dropped out).
Melanoma Neverland. I am ready for the day when we all have a door out!!! Fingers crossed for you, Bill!! Love, c
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- February 23, 2019 at 7:37 pm
Hi Bill,
I'm rooting for you all around and Dr. Sharfman sounds like a real advocate. I've been reading about the reasons behind excluding patients with brain metastases. I found this editorial to be helpful in understanding the issues around this and it sounds like they are starting to debunk some of the reasons for excluding patients:
Also, some trials will have an exemption committee made up of Principal Investigators, Clinicians, and sometimes statisticians that will review the case and decide if exemption can be made even though a certain exclusion criteria has been met. If it is a new growth, it may be worth asking Dr. Sharfman to request an exemption f this trial has a committee. I know it is longshot since they tend to exclude this population for several reasons but you never know. First, I'm hoping it's not anything new and second, I hope you get in the trial either now or later.
Good luck, hope all of this is moot point 🙂
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