6 ms·
The biggest question in oncology today is whether this approach could also be used for solid tumors Yeah. I'm dying of a squamous cell carcinoma infestation: h
by jseliger 2y ago
The biggest question in oncology today is whether this approach could also be used for solid tumors
Yeah. I'm dying of a squamous cell carcinoma infestation: https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-cell-carcinoma-and-the-treatments-that-might-save-me-are-just-out-of-reach/ https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce... and the most recent clinical trial drug that was working, has stopped working: https://jakeseliger.com/2024/05/20/in-which-the-antibody-drug-conjugate-adc-pdl1v-shrinks-the-tumors-in-my-neck-and-buys-me-more-time/ https://jakeseliger.com/2024/05/20/in-which-the-antibody-dru....
One of the options for a next trial is from TScan, "A Basket Study of Customized Autologous TCR-T Cell Therapies." https://www.clinicaltrials.gov/study/NCT05973487?term=tscan002&rank=1 https://www.clinicaltrials.gov/study/NCT05973487?term=tscan0.... On the one hand, it looks very promising; on the other hand, lots of promising treatments fail during dose-escalation, first-in-human trials. To my knowledge, the first humans dosed with TScan's TCR-T therapy got it a few months ago.
I got lucky, too, in that a slot for BGB-A3055 with Tislelizumab, an immunotherapy drug and trial, opened up at NEXT Oncology-Dallas: https://clinicaltrials.gov/study/NCT05935098?term=BGB-A3055&rank=1 https://clinicaltrials.gov/study/NCT05935098?term=BGB-A3055&.... One challenge, however, is that I received a bispecific antibody called petosemtamab from Sept 2023 to March 2024, then PDL1V (an antibody drug conjugate), and they're considered immunotherapies, so there's a question of whether continuing to pursue immunotherapies makes sense. By now the number of lines of therapy I've gotten make me ineligible for some trials: https://bessstillman.substack.com/p/the-drugs-killing-dying-patients https://bessstillman.substack.com/p/the-drugs-killing-dying-..., and I've also blown through the more promising drugs for what is a difficult-to-treat cancer type.
It took just five years to get from their first promising results to FDA approval
This sentence is insane. "Just?" It should be happening in months, not years. These are people with fatal diagnoses. Having the FDA hold up therapies like this is criminal.
- jonny_eh 2y agoAnd they're slow to avoid approving dangerous treatments, but that's absurd since the patients are already dying. The risk of not approving needs to be taken into account.
- WithinReason 2y agoIt's a real life Trolley Problem
- panosfilianos 2y agoRight to try makes this a variation of the Trolley Problem, because the person to pull the lever is the same person that's tied to the tracks.
- ImHereToVote 2y agoThe solution to the Trolley Problem is to perform a "slipping the switch" maneuver. The solution for terminal cancer patients is to let them use any experimental services they please. Next.
- simpaticoder 2y agoYes it's strange to tell a dying person "this drug is too dangerous to try because it may kill you".
- onlyrealcuzzo 2y agoOkay - but what happens when your doctor is getting bribed to say you're dying to get you to try expensive experimental drugs with no evidence of working? In the best case, you end up bankrupt. In the worst case, you end up bankrupt and dead. This is only a slightly more extreme version of the Sackler problem. Deregulation sounds great if you believe everyone is logical and has accurate information to make decisions for themselves. I'm sure there must be a much better solution than what we've got for the people who are dying. But I doubt the answer is to just let drug companies sell anything to anyone and make Medicare pay for it.
- panosfilianos 2y agoThis community may be of interest to you: https://community.cancerpatientlab.org/ https://community.cancerpatientlab.org/ It is comprised of very knowledgeble patients (like you) that are very actively involved in their treatment. I have been researching a lot of these resources due to my mother's condition, so feel free to let me know if you'd like to do some knowledge sharing. Wish you all the best on your journey. God bless.
- jsperx 2y agoThank 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.
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- ChrisMarshallNY 2y agoComing from Cancer Alley (Long Island, New York), I have been watching people battling cancer for 34 years. I wish you the very best.
- nick__m 2y agoThanks you for posting your story in details, as someone who's wife had oligometastasis on her spine from breast cancer (nothing compared to you, but incredibly stressful nonetheless) you give me hope that when Ribociclib stop working, M.A.I.D. is not the next step. I wish you all the best in your trial, I wish that it's effective and may the side effects spare you !
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- bearjaws 2y agoFWIW if the drug was approved faster, most immunotherapies are very hard to scale. I worked in specialty pharma for 6 years and the ability to expand capacity is very limited, a rock star drug will take 2-5 to reach full production. Sometimes people see Covid / Ozempic and think it would be easy to scale like that, but the requirements and challenges are completely different.
- pfdietz 2y agoPembrolizumab and the like scale just fine.
- xivzgrev 2y agoI'm sorry to hear that. My mother in law has stage 4 lung cancer. She has some mutations for which there are targeted treatments, but the cancer mutated in one area. Fortunately there were more treatments for that mutation, but she's had some significant side effects from that one. There's potential clinical trials but there's lots of criteria, some may not even be near by: a lot of noise, not much signal. Every quarter's CT scans might tell us medication has stopped working, and she needs to start chemo (with the side effects/lower QOL). It's just all really hard. I try to keep present when spending time with her.
- DonsDiscountGas 2y agoIt's not possible to evaluate efficacy any faster than that. I suppose we could just let everything on the market and see what happens, but it would still take years to accumulate efficacy data. So you'd just be left with preclinical data which isn't that useful (if it was the failure rate of oncology clinical trials wouldn't be so high)