Earlier quoted context omitted.
Is it available?
It is! I got one for $750-ish about a month ago.
Do you have to be over 50 to take it?
The one-year anniversary of my total glossectomy
31–40 of 58 posts
Re: The one-year anniversary of my total glossectomy
#32Earlier quoted context omitted.
I had a coworker that had the same thing Oh man, I hope he or she was okay. This is terrible. In most people in whom squamous cell carcinoma of the tongue gets caught early, it's curable. I'm in the group in whom it's caught relatively early, but the initial surgery and radiotherapy isn't enough. Regarding attitude, I figure that there is much I can't control, but attitude is one I can. WWMAD? (Would would Marcus Aur…
It was a "he," and it was not OK. I think it was fairly advanced, by the time it was diagnosed. The guy was a health nut, and avoided doctors like the plague. I won't go into details about what he went through. Not fun. I sincerely wish you the best. I live on Long Island, and have been watching folks battling cancer, constantly, since 1990 (when I moved here).
I’m sorry, but would you mind clarifying that last statement? Is Long Island a hotbed of cancer? Did you move to Long Island to work with cancer patients?
Re: The one-year anniversary of my total glossectomy
#33Earlier quoted context omitted.
I went through terminal cancer with both parents. It's infuriating that with that diagnosis the medical cabinet is open with respect to palliative care, in quantities that make an exit simple. But at the same time they feel the need to protect you from possible treatments. Potential accelerated death? Approved. Potential prolonged life? We'll need more evidence.
It's especially infuriating that federal restrictions on medical treatment are unlawful to start with (there's no constitutional basis for them).
I think the Commerce Clause is a pretty sound basis for most FDA regulation.
It just gets weird with the overbroad supreme court decisions that are like: "well, stuff that only happens in a single state but that might be used for interstate commerce or somehow impact interstate commerce indirectly" is also covered. [1][2]
Re: The one-year anniversary of my total glossectomy
#34Earlier quoted context omitted.
It's especially infuriating that federal restrictions on medical treatment are unlawful to start with (there's no constitutional basis for them).
I think the Commerce Clause is a pretty sound basis for most FDA regulation. It just gets weird with the overbroad supreme court decisions that are like: "well, stuff that only happens in a single state but that might be used for interstate commerce or somehow impact interstate commerce indirectly" is also covered. [1][2] [1] https://en.wikipedia.org/wiki/Gonzales_v._Raich [2] https://en.wikipedia.org/wiki/Wickard_v.…
One can only get from regulating interstate commerce to telling a terminal patient what medicine he may consume by a tortured logical process driven by motivated reasoning.
Re: The one-year anniversary of my total glossectomy
#35What was the original reason you got that PET scan that led to the cancer diagnosis? Just random luck that you happened to even discover it? Scary stuff
Re: The one-year anniversary of my total glossectomy
#36Earlier quoted context omitted.
It is! I got one for $750-ish about a month ago.
Do you have to be over 50 to take it?
Looks like no, but you're more likely to have to go the online provider route which is $950. https://www.galleri.com/patient/the-galleri-test
Re: The one-year anniversary of my total glossectomy
#37Earlier quoted context omitted.
> I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. Both very in character for what FDA does.
[flagged]
It is quite the conundrum today that the FDA is criticized harshly on all sides, left and right, for being both too restrictive and too permissive (food ingredient blacklist instead of EU whitelist, approving that Alzheimer's treatment that's probably going to do nothing but grift Medicare for billions of $).
Of course with a large number of food and drugs, they'll always be too restrictive on some things and too permissive on others, but I don't envy their position.
Re: The one-year anniversary of my total glossectomy
#38@jseliger, thank you for sharing. Sorry to welcome you to the club nobody wants to join. And congratulations for making it this far. And bravo for setting such an example fighting on others' behalf. I'd like to do more of that myself. My prognosis was similarly grim: median life expectancy of 18 months, 5-year survival rate of 10%. That was more than 11 years ago. My point is that nobody knows what will happen.
If hearing more about my story might be helpful, or if I could send you one or two books that helped me the most, please just let me know. No pressure. In any case, know you're not alone, you're loved, and you're profoundly connected to the broader family of cancer survivors. It's a strange and terrible gift, to be confronted with your mortality. All good thoughts your way, brother.
Re: The one-year anniversary of my total glossectomy
#39Earlier quoted context omitted.
It was a "he," and it was not OK. I think it was fairly advanced, by the time it was diagnosed. The guy was a health nut, and avoided doctors like the plague. I won't go into details about what he went through. Not fun. I sincerely wish you the best. I live on Long Island, and have been watching folks battling cancer, constantly, since 1990 (when I moved here).
I’m sorry, but would you mind clarifying that last statement? Is Long Island a hotbed of cancer? Did you move to Long Island to work with cancer patients?
Yes, Long Island is known for having cancer clusters.
Re: The one-year anniversary of my total glossectomy
#40Earlier quoted context omitted.
You're welcome! I've been "reading the Internet" since the late '90s with sites like /., and, when I got diagnosed with the death sentence sentence—recurrent and metastatic head and neck cancer—I began looking into clinical trials, and I realized that I'd never read any good descriptions of what clinical trials are like from the patient's perspective. So my wife and I decided that the thing that we needed to exist in…
> I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. Both very in character for what FDA does.
It seems to me trying to look at it objectively. The FDA is in an impossible situation forever.
If they delay drugs they are bureaucratic and indifferent. Filling graveyards, as said.
If they release drugs too fast/unproven then they open the gates to scammers, unethical companies trying to sneak ineffective products they spent too much on, ect. Basically the whole reason the FDA was formed would be in question. Then it sounds self serving but the people in charge will start to ask why do we even have the FDA? Which will drain funding then eventually set us back to the reason the FDA had to be invented in the first place. Snake oil salesmen will run rampant and we will need an agency to prevent dying desperate people being taken advantage of for whatever remaining money they have.