4 ms·

Actually the Moderna trials are recruiting metastatic and treatment resistant disease. From his description he has not met inclusion/exclusion criteria for the

Actually the Moderna trials are recruiting metastatic and treatment resistant disease. From his description he has not met inclusion/exclusion criteria for the studies due to treatments received and not received rather than being too advanced in stage. It's highly highly highly unusual to be offering an experimental therapy on compassionate grounds when conventional options that have potential to actually work well haven't been tried yet. In this post he only describes locoregional therapy and it appears he has not tried anything systemic yet. The closest I've seen is we at least try a very short attempt of something in clinical use and then say patient refused/intolerable side-effects/treatment failure and move on. I can't imagine a circumstance where medical ethics would allow to skip a trial of validated therapy for something without even phase I data. It's not like this mRNA by Moderna is known to actually work.

HWR_14 3y ago
Are there conventional therapies that he has not tried that could be effective? It seems he has never had chemotherapy, but he implies at this point that's a long, almost impossible, shot.
- haldujai 3y ago
  It depends what you consider the outcome to be, by virtue of being a 39 y/o with early recurrent and possibly oligometastatic disease he is in the definitively palliative-intent treatment category so everything is a long shot. Really the best and only chance for curative intent with most cancers is radical resection with negative margins which unfortunately did not work here (most likely due to micrometastatic disease and perineurial invasion). All of these new and fancy systemic options are not believed or intended to be curative-intent. If we're talking about meaningful prolongation of life the best treatment would be a PD-L1 inhibitor like pembrolizumab if he has expression. He doesn't mention systemic/immunotherapy in his post but on the donation page his brother does so I'm unsure if he's in the early resistance/treatment failure arm for pembro, if that's the case it's very devastating. He's correct that gem/plat chemo isn't great but it's something. Patients in his position are best served in clinical trials (also in the treatment guidelines). With that said it also seems he had an aggressive bone cancer in his childhood, this suggests something unique to this person (e.g. some genetic driver mutation or hereditary cancer syndrome) that may complicate any of this prognostication. Unfortunately something very atypical and aggressive is happening in this person. H&N SCC in younger patients or HPV+ usually has good outcomes. Given his history it's probably not relevant to this case but best advice for any HN reader is to go get your HPV vaccine and reduce the risk of SCC.
  - sgseliger23 3y ago
    Hey thanks for this post. You sound very knowledgeable. Couple things: Jake’s SCC is non-HPV. He did Keytruda, and it had no effect. He’s being treated at the Mayo clinic where most of the oncologists were ambivalent about chemotherapy. He’s beginning platinum based chemo on Monday as a hail mary to try to kill this stuff. And yeah — all the doctors have been flummoxed by the aggression of this cancer. It was the same when he had sarcoma twenty years ago.
    - haldujai 3y ago
      I’m sorry to hear that. Best wishes for Jake and your family.
    - HWR_14 3y ago
      When I first posted, I didn't know Jake was on HN or that you were here either. If my critique hurt either of you, I'm sorry. I hope the chemo he starts on Monday works and Jake recovers. I hope that you and Jake find some comforts and joy during the upcoming battle. The best of luck.
      - sgseliger23 3y ago
        It’s okay, I meant what I said. You sound like you have some sort of medical background and I appreciate any attention to his story. His wife is also a medical doctor. He’s had the best care possible. It sadly was not enough.
cplusplusfellow 3y ago
Do our “right to try” laws mean: only after you’ve gone through our $5m treatment plans?
- haldujai 3y ago
  “The Right to Try Act is one way for patients who have been diagnosed with life-threatening diseases or conditions who have tried all approved treatment options and who are unable to participate in a clinical trial to access certain investigational treatment options.“ As an aside Keytruda is closer to 150k/year.
FreshStart 3y ago
[flagged]

HWR_14 3y ago

Are there conventional therapies that he has not tried that could be effective? It seems he has never had chemotherapy, but he implies at this point that's a long, almost impossible, shot.

haldujai 3y ago
It depends what you consider the outcome to be, by virtue of being a 39 y/o with early recurrent and possibly oligometastatic disease he is in the definitively palliative-intent treatment category so everything is a long shot. Really the best and only chance for curative intent with most cancers is radical resection with negative margins which unfortunately did not work here (most likely due to micrometastatic disease and perineurial invasion). All of these new and fancy systemic options are not believed or intended to be curative-intent. If we're talking about meaningful prolongation of life the best treatment would be a PD-L1 inhibitor like pembrolizumab if he has expression. He doesn't mention systemic/immunotherapy in his post but on the donation page his brother does so I'm unsure if he's in the early resistance/treatment failure arm for pembro, if that's the case it's very devastating. He's correct that gem/plat chemo isn't great but it's something. Patients in his position are best served in clinical trials (also in the treatment guidelines). With that said it also seems he had an aggressive bone cancer in his childhood, this suggests something unique to this person (e.g. some genetic driver mutation or hereditary cancer syndrome) that may complicate any of this prognostication. Unfortunately something very atypical and aggressive is happening in this person. H&N SCC in younger patients or HPV+ usually has good outcomes. Given his history it's probably not relevant to this case but best advice for any HN reader is to go get your HPV vaccine and reduce the risk of SCC.
- sgseliger23 3y ago
  Hey thanks for this post. You sound very knowledgeable. Couple things: Jake’s SCC is non-HPV. He did Keytruda, and it had no effect. He’s being treated at the Mayo clinic where most of the oncologists were ambivalent about chemotherapy. He’s beginning platinum based chemo on Monday as a hail mary to try to kill this stuff. And yeah — all the doctors have been flummoxed by the aggression of this cancer. It was the same when he had sarcoma twenty years ago.
  - haldujai 3y ago
    I’m sorry to hear that. Best wishes for Jake and your family.
  - HWR_14 3y ago
    When I first posted, I didn't know Jake was on HN or that you were here either. If my critique hurt either of you, I'm sorry. I hope the chemo he starts on Monday works and Jake recovers. I hope that you and Jake find some comforts and joy during the upcoming battle. The best of luck.
    - sgseliger23 3y ago
      It’s okay, I meant what I said. You sound like you have some sort of medical background and I appreciate any attention to his story. His wife is also a medical doctor. He’s had the best care possible. It sadly was not enough.

cplusplusfellow 3y ago

Do our “right to try” laws mean: only after you’ve gone through our $5m treatment plans?

haldujai 3y ago
“The Right to Try Act is one way for patients who have been diagnosed with life-threatening diseases or conditions who have tried all approved treatment options and who are unable to participate in a clinical trial to access certain investigational treatment options.“ As an aside Keytruda is closer to 150k/year.

FreshStart 3y ago

[flagged]