Don’t mean to hijack this thread, but I don’t think HN has DMs. Read some of your comments and as a person with cancer would love to pick your brain a little to develop my mental model further (and of course wouldn’t expect anything for free.) Drop me a line at [my HN username] [at] nearby.org if open to discussing more. Thanks!
The article has a couple paragraphs about the complexity involved in fabrication and how labor intensive it is:
“Maus walked me through some of the steps needed to create CAR-T cells for the trial. We started with the room where the DNA instructions that are added to the T cell’s genome are written. […] We went on to the lentiviral-production room, where technicians create viral vectors carrying this DNA. From there, we moved to the tissue-culture room, where the vector is mixed with normal T cells to create the CAR-T. Finally, we visited the immune-monitoring part of the lab, where lab techs assay blood draws and other samples from patients, looking for proof that the CAR-T cells have made it to their targets.”
“Jennifer Wargo, a professor of genomic medicine at MD Anderson, referred to the cost of immunotherapy treatments as ‘financial toxicity.’ The patent for June’s CAR-T therapy for leukemia is owned by Novartis, and the median cost for the treatment is $620,000. Even if drug companies don’t try to profit from these therapies, the process is inherently labor-intensive: T cells have to be removed from the patient’s own blood, genetically altered, then reinfused. It’s difficult to determine where economies of scale might kick in.”
Half of that second paragraph seems to not belong there. Why rebrand "expensive" as "financial toxicity"? Why is profit bad when companies' losses are fine? It seems very strange.
Yeah, but that opens many more questions than it answers: this $620 000 figure cannot come out of labor intensity alone, as it represents the cost of thousands of work hours (literally a dozen of doctor full time for a month, or at least 50 well paid specialized technicians working for an entire month on each patient treatment) yet the process described in the text doesn't seem to match this level of labor.
Thank you for this, I have an extremely rare subtype of sarcoma and it’s been tough to a) find any research about it specifically and b) find high-quality resources about state of the art treatments and interventions that aren’t like, Facebook groups where people post wacky articles about homeopathic stuff or whatever.
Would love to hear about any more recommendations you or OP might have for good forums etc.
As somebody who unfortunately has a Stage IV diagnosis I have been researching mRNA and there have been promising results such as the MSK pancreatic study below, but still much to be ironed out — they had half the participants get a response but the other half nothing, even though each treatment was individually targeted and customized. They are doing a larger study now to try to see what other factors may be at play.
Seems not…the AHA article quotes a Stanford PhD: “One of those details involves the nutrient quality of the diets typical of the different subsets of participants. Without this information, it cannot be determined if nutrient density might be an alternate explanation to the findings that currently focus on the window of time for eating. Second, it needs to be emphasized that categorization into the different windows of time-restricted eating was determined on the basis of just two days of dietary intake[.]”
I think the challenge is more coordinating the 8 people who will be a trusted part of your life long-term. Also they’d have to be sure to keep their fragments of the key intact through replacing devices, etc, no? Seems like just keeping a Yubikey in a safe deposit box would be simpler.
If it is a safe at your home, you need to have a fixed home address in the first place, and the usual advice about off-site backups also applies.
If it is at friends or family, you’re back at the same problem.
If it is a rented deposit box, you need to trust the company you rent it from (banks don’t usually offer such services anymore, and there are risks like in [1])
I just went through 6 cycles of 5-day IV chemotherapy (AIM) and I fasted for all of them, for a total of over 35 days of water-only fasting during the last 5 months. I can’t find the PubMed link right now but there were small studies that looked like healthy cells would go into kind of a suspend/preserve mode that lessened side effects, whereas cancer cells still experienced the intended cytotoxicity. I tolerated the treatments quite well, lost hair of course but only vomited twice during the whole time. Lost weight each time but was able to put it back on quickly during the following week for each cycle, though I do want to watch body composition (don’t want to trade muscle for fat).
Did it make a difference in effectiveness? I actually have my follow up scans tomorrow to find out. As you can imagine, I really really hope so.
I'm not a doctor. Ive just spent a lot of time looking into this (as im sure you have) because a close relative died from Stage IV lung cancer.
There are studies on fasting with chemo.. and depending on the type of cancer its either effective or ineffective. My comment was specifically about the end stages where cachexia is common (from my link above):
"Cachexia is associated particularly with cancer where the prevalence can reach 50–80% in advanced malignant cancer."
And all of the advice Ive found says fasting is not recommended for patients with cachexia.
It sounds like it was fine in your case though because you were able to regain the weight. Best of luck with your scans.
What specific regulations are you referring to, that apply to EHR software and the like? I know things sold as medical devices/appliances require FDA approval, but for general electronic healthcare record systems (e.g. Epic), what applies other than of course the security/privacy provisions of HIPAA?
It permeates the systems. For example, any time you want to update the complement that sends e-prescriptions the network will want you to recertify the system for conformance to requirements.
Their very existance is a regulation that gets in the way of care. Doctors are in many cases required to keep databases of patient records and they have to be digital. Well that shoehorns them into using old bloated ehr software that takes forever to use when they could just use paper
