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#198464 06-05-2019 07:58 AM
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Hubby was dx a little over 5 years ago with buccal cancer, had surgery and max radiation. Within a month, more cancer and radical mouth/neck dissection. A few months later cancer back again so he did strong chemo every 3 weeks. He had remission for 2.5 years. Cancer back...docs talking about immunotherapy. Has anyone done this? how successful? many side effects? From what I've read..... this treatment is mostly associated with trials? Looking for more info so can ask doctors more informed questions. thanks


shelydiane
Wife and CG to husband Dale (age 55)
DX with SCC left cheek, Stage 2+
Surgery 3/13/13 and RND (30 lymph nodes), all negative
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So we are in a completely new area of cancer treatments, most researchers believe that a decade or two from now radiation and chemo as we know it will be dinosaurs. But we are not there yet. There are several really good, and a few FDA approved, immunotherapies to consider right now. Note that only a couple of these will easily be available at a smaller hospital, the others available at one of the big guns like Hopkins, MD Andersen etc. The approved family of IO's are heavily in a group called immune checkpoint inhibitors. They have a good track record mostly with minimal side effect, but occasionally there are some adverse events which can be significant but mostly they are manageable. These essentially allow your immune system which is kept in check by some protein blockers to get out of its restrictions completely. That is good, but sometimes it does more than it should. Nevertheless, those times are infrequently. I guess the biggest issue is these do not work for everyone, actually, about 40% have benefit. So we are learning that using IO's in concert with each other should be the way we approach this. The problem is there are not that many developed yet.

Other IO ideas are T cell modifiers, often called CAR-T cell therapy which works really well in a small number of people, and in trials you will find cancer vaccines that are also therapeutic ( not like preventative as we normally think of a vaccine to be).

Right now most IO's are being used in people that are in recurrence, and where the primary ideas can no longer be used, such as you can't usually have radiation twice. But they are gaining favor as first-line ideas and that will only continue to become more common as we learn more about them and develop more of them. Given what you have described the situation is, I think this is the next move in the game. I would be happy to talk to you more about this if you choose this route, as there are some things to watch for during treatment that need to be addressed quickly.

Last edited by Brian Hill; 06-05-2019 01:28 PM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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I was on the Keytruda Immunotherapy trial a little over a year ago. The only side effect I can recall was a rash. (not bad) Unfortunately I could not finish the trial as I developed a new cancerous lesion. After they discovered the lesion, they opened up my profile and found that I was actually on the drug and not the placebo. I am not HPV + but for those who were diagnosed as HPV +, the research is showing those patients are showing better outcomes than those of us who are not. I would not hesitate to try the immunotherapy again if they offered a new drug.
Good luck!


Multifocal invasive SCC First Diagnosis 11/29/2010 - SCC in situ on left side of tongue - partial glossectomy + lymph node removal left side
Recurrence 2012 wide excision then chemotherapy and radiation
Recurrence 2015, 4 re-excisions 2016
2017 partial glossectomy Trial for Keytruda infusion - new lesion partial gloss
partial gloss 2x 2018 hospitalized malnutrition now g-tube feeding only
partial gloss 2x 2019 Dr working goal reconstructive flap but need clean margins

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