We thought we had a plan until the middle of Wednesday.
My husband is measured and targeted for radiation that was scheduled to begin today (that's the photo with this post).
Now we are back in consultations because there is a deep lymph node that lit up on the Pet which may or may not be melanome and can't be felt under the right armpit, and the new tumor on the back of his head that showed up last week which is undoubtedly cutaneous melanoma.
Oncologist recommended trying a 3rd immunotherapy, which I, at this point, am opposed to. His theory is "maybe" the Yervoy has changed the environment for the tumors so returning to a different PD1 (Optivo, thank you commercials) may help, because he had 1 patient where this helped. As you know, I'm not a fan of an N of 1. I'm also concerned about the total amount of immunotherapies he's been exposed to already and potential for creating autoimmune serious problems with more exposure for unknown gain, although our oncologist seemed unconcerned about this. He also says surgical removal of these ongoing tumors seems now to be a bad idea at the pace with which they are showing up.
I asked for our doctor to contact NIH because the shoulder has the largest tumor load, and I don't want it removed if we need it to determine TIL or other clinical trial eligibility, or to throw more immunotherapy at my husband which could eliminate him from a TIL trial without knowing if he's even eligible for TIL, which is a nasty protocol in and of itself.
Yesterday our oncologist spoke with NIH and they requested records, so now the radiation protocol is on hold for a week while we wait for the initial records review in Bethesda, MD to see if my husband may be a potential trial candidate.
.Keeping this community in my heart and prayers. Looking forward to to a visit this weekend with 2 of our daughters before one heads out to the rain forest in Panama for a college course Sunday.
peace, even in the dark places,
missy
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This is all a lot of information! I’ve been wanting to reply all day I just haven’t had the time. What clinical trail is he maybe a candidate for? Those spots look different then the last picture 😔 I’m sorry everything was halted. But it seems like you’ve done your research, and know a lot about the immunotherapies. So surgery is out of the question? I can understand why.. enjoy your visit with your daughters. Keep us updated ❤️❤️
Missy, I agree with kellyOd’s comments, this is a lot of information, but you seem to be so on top of everything that gets thrown at your husband. Praying that your husband can get into the clinical trial that you are speaking of. Not sure I understand it all, sure wish I did. What does an N of 1 mean? Not familiar with that at all, and also TIL. Sorry if you already explained it, I missed it. Your husband is off immunotherapy now is that correct? Keeping you both in my thoughts and prayers. Enjoy your visit with your daughters
Michele
He is lucky to have you as an advocate. And I agree with Michele, you seem on top of things. There is no easy solutions to any of this, all feels like chaos. I hope your weekend and week is peaceful as you wait to make your next big decision. Ugh
Did you ask your doctor why he didn’t recommend TIL first? Is there a reason he wants to try another immunotherapy instead of TIL therapy? Time may be an issue here. Before you go against his recommendations, you need to have ALL the facts. They usually don’t give them to you unless you ask, and make it clear you want to know.
Thinking of you and your husband and hoping for the best.
Thank you. I think our doctor was initially reluctant to consider referral for the TIL process because the process is pretty brutal with high risk side effects. Until we know if he is even a candidate, it's hard to know all of what to do, and since he would not be able to do the treatments himself, he really doesn't know all the ins and outs of the process. Here are a few highlights: It takes an everage of 14-21 days to grow the TIL cells following extraction and separation. Not everyone who gets the cells to grow can accept them. There is some kind of "cell challenge" to see if they can successfully cross the cancer barriers. We had a support group member who failed at this level of the induction process.
Then you usually get full body radiation, then Interleuken-2 to destroy your entire immune system. These happen at the hospital and with a patient in total isolation. Then the TIL cells are reintroduced.
Risks include death, hearing loss, vitiligo, auto immune disorders, rash, fevers, etc.
One of our concerns has been trying to balance treatment that might be life prolonging against side effects/ quality of life. The Optivo would be life prolonging, but unlikely to be curative. The TIL has life prolonging and potential for cure. Apparently NIH is usually pretty quick to respond. Looks like MD Anderson in Texas has a similar large TIL cohort arm (and by large I mean about 175 persons) in Phase 3 trials. About the same cohort size as NIH. So not many folks quality and get into the study arms.
Thanks for asking and holding us in your thoughts and for all the ideas, questions and suggestions.
Just read the article you posted and wanted to say that my sister was in a clinical trial that did the ipi/nivo combo and then the dabrafenib and trametinib combo. She was initially released from the trial due to a drop in one of her numbers but once she was stabilized the doctor kept her on the same protocol as the clinical trial. She seemed to tolerate the combo reasonably well. She had severe rigors and the doctors would stop and start treatment to get her some relief. I guess you get in your own little bubble and I had assumed that the combo was the treatment most people do now. She did have some shrinkage of her tumors initially which was amazing. Just thought I would share.
I am sorry to hear this latest news. Melanoma can change so rapidly it is frightening. When my sister first became ill I brought up TIL countless times through her illness and wanted to get her to MD Anderson but ultimately my sister decided against it, due to the extremely grueling protocol and the advice of her doctors. It is not an easy decision to make.
You have been our rock and a great source of information, please know that we are here for you. Enjoy your visit with your daughters.
I am a believer in the mutual support aspect of this forum and deeply appreciate each of you..
Our time with our daughters was good this weekend and kept our minds and bodies occupied. Our anxiety is still affecting our sleep as we wait for information, but we are doing what we can together and feel very supported.
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