2 ms·

One problem with GBM is how fast it progresses. I was my dad's caretaker when he had it, and the amount of waiting and paperwork required for most of the progra

One problem with GBM is how fast it progresses. I was my dad's caretaker when he had it, and the amount of waiting and paperwork required for most of the programs we looked at were beyond what his life expectancy was. Those that might have been possible were shut down - it was during the peak of covid. The exhaustion from the daily visits to the cancer center for radiation treatment required full head to toe PPE for both of us. Cancer itself is exhausting, but the paperwork and phone calls and pharmacies - it's too much. I'm grateful for the work of the doctors in the article, and very hopeful that the treatment works. A close friend of mine was on a trial vaccine for his cancer, which looked promising for a while, but suddenly stopped working - the cancer was ultimately fatal. I think trials should be offered as potential first steps, especially for aggressive cancers. Patients know the risks. They're either 100% going to die within 6 months to cancer, or, worst case, die trying to fight it, or best case, be cured.

anonymouskimmer 3y ago
> I think trials should be offered as potential first steps We need really good science and statistics, far superior to p-values, to allow this potentially life saving treatment without the inevitable deaths from people at the limits returning a "not significant" finding for something that actually works. Maybe something like allowing people who are too far gone to qualify for treatment as part of a study to instead qualify for the experimental treatment with their results only being included as a special "humanitarian" cohort. I'd also like studies to be able to compare a treatment group against prior control groups, so that everyone today can get the experimental treatment instead of some of them being given a placebo (if there's a lack of another decent treatment to use as a control). If there's nothing effective that can be done as a control, every one should get the treatment.
- buffington 3y ago
  The rational side of me totally agrees with everything you've said. But the part of me that witnessed glioblastoma - I think when someone is facing that, it should be a VIP pass straight to the "whatever has even a remote chance of actually working" lobby. Which is basically what the article describes, so I'm optimistic for the doctor and his team. Of course, not everyone is as risk tolerant as I am. My dad wanted to believe he'd be one of the rare "survivors" (I don't think it happens) using traditional radiation and chemo, and was still weighing pros and cons of other potential treatments. But I have the benefit of hindsight, and a lot more education now, and I think it's unethical to not immediately consider trial programs. The most common way to treat glioblastoma today (targeted radiation and chemo) one that only promises to give you more months of life, not years, is also the only treatment option covered by Medicare, the health insurance provider for most retirees in the United States. The uber-aggressive glioblastoma that my dad developed is what most people over retirement age get when they develop glioblastoma as well. Average lifespan from diagnosis to death: 6 months. That's if you surgically remove the tumors, a procedure not without its own risks. Risks that are usually worth it, since without surgically removing the tumors, lifespan drops to weeks. What I'm saying is there's no path to trial programs for most of the people who'd benefit from those trials the most. It's not even on the map for them.

anonymouskimmer 3y ago

> I think trials should be offered as potential first steps We need really good science and statistics, far superior to p-values, to allow this potentially life saving treatment without the inevitable deaths from people at the limits returning a "not significant" finding for something that actually works. Maybe something like allowing people who are too far gone to qualify for treatment as part of a study to instead qualify for the experimental treatment with their results only being included as a special "humanitarian" cohort. I'd also like studies to be able to compare a treatment group against prior control groups, so that everyone today can get the experimental treatment instead of some of them being given a placebo (if there's a lack of another decent treatment to use as a control). If there's nothing effective that can be done as a control, every one should get the treatment.

buffington 3y ago
The rational side of me totally agrees with everything you've said. But the part of me that witnessed glioblastoma - I think when someone is facing that, it should be a VIP pass straight to the "whatever has even a remote chance of actually working" lobby. Which is basically what the article describes, so I'm optimistic for the doctor and his team. Of course, not everyone is as risk tolerant as I am. My dad wanted to believe he'd be one of the rare "survivors" (I don't think it happens) using traditional radiation and chemo, and was still weighing pros and cons of other potential treatments. But I have the benefit of hindsight, and a lot more education now, and I think it's unethical to not immediately consider trial programs. The most common way to treat glioblastoma today (targeted radiation and chemo) one that only promises to give you more months of life, not years, is also the only treatment option covered by Medicare, the health insurance provider for most retirees in the United States. The uber-aggressive glioblastoma that my dad developed is what most people over retirement age get when they develop glioblastoma as well. Average lifespan from diagnosis to death: 6 months. That's if you surgically remove the tumors, a procedure not without its own risks. Risks that are usually worth it, since without surgically removing the tumors, lifespan drops to weeks. What I'm saying is there's no path to trial programs for most of the people who'd benefit from those trials the most. It's not even on the map for them.