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/ Search [ ] [Search] The Story's Story Menu Skip to content * Home * My Novels * About * Essays * Interviews I am dying of squamous cell carcinoma, and the treatments that might save me are just out of reach July 22, 2023 By Jake Seliger in Books 28 Comments Alex Tabarrok writes about how "when the FDA fails to approve a good drug, people die but the bodies are buried in an invisible graveyard." I'd like to make that graveyard a little bit more visible because I'm going to be buried in it, in a few weeks or months. A squamous cell carcinoma tumor appeared on my tongue last September; the surgery for it occurred in October, followed by radiation in December - January, but the tumor reappeared at the base of my tongue in April. A massive surgery on May 25 appeared to produce "clean margins" (that is, no tumor cells remained where the surgeon operated), albeit at huge cost: I have no tongue any more, just a "flap" of muscle where it used to be, and no ability to swallow solid foods ever again. Monday I'm starting chemotherapy, but that's almost certainly going to fail, because a CT scan shows four to six new gross tumors, four in my neck and two, possibly, in my lungs. So what might help me? MRNA tumor vaccines. Head and neck squamous cell carcinomas (HNSCC) are notoriously treatment resistant, and mRNA vaccines have shown huge promise. Why aren't they happening faster? Because the FDA is slow. There are some trials underway (here is one from Moderna; here is another), and, although I'm trying to enroll, I may be too late, since my cancer moves so aggressively. The FDA was loathe to approve initial mRNA human trials, even when those trials would have been full of people like me: those who are facing death sentences anyway. Here is one story, from "Why the FDA Has an Incentive to Delay the Introduction of New Drugs:" In the early 1980s, when I headed the team at the FDA that was reviewing the NDA for recombinant human insulin, . . . we were ready to recommend approval a mere four months after the application was submitted (at a time when the average time for NDA review was more than two and a half years). With quintessential bureaucratic reasoning, my supervisor refused to sign off on the approval--even though he agreed that the data provided compelling evidence of the drug's safety and effectiveness. "If anything goes wrong," he argued, "think how bad it will look that we approved the drug so quickly." (41) The problem is that delaying mRNA cancer vaccines kills people like me. We need to have a much stronger "right to try" presumption: "When Dying Patients Want Unproven Drugs," we should let those patients try. I have weeks to months left; let's try whatever there is to try, and advance medicine along the way. The "right to try" is part of fundamental freedom--and this is particularly true for palliative-stage patients without a route to a cure anyway. They are risking essentially nothing. When I am dead and buried at least those who I love and who love me will know the FDA protected me and millions of others like me from ourselves. Thanks, FDA. But the dead do not vote and do not agitate for change, so the system is likely to grind on. In computer science there is a convention in which one's first program prints "Hello, world." Now it is my turn to write "Goodbye, world." I'm crying as I write this and am sorry to have to go so soon. I have to give back the gift, though with great sadness. Here is more about the FDA being slow and bureaucratic. Jake Seliger, possible figurehead for the invisible graveyard of men and women killed by the FDA's slowness The author on July 22, 2023, when he is, or was, still alive. Share this: * Share * * Email * Facebook * Reddit * Twitter * Print * Like this: Like Loading... Related Post navigation << Links: Some cancer things, but also some other things 28 responses 1. Anh says: July 22, 2023 at 9:42 am It's so sad to hear your story! I pray you will find peace and happiness wherever you are. LikeLike Reply 2. Anonymous says: July 22, 2023 at 9:52 am I read your story. LikeLike Reply 3. Anonymous says: July 22, 2023 at 9:56 am If the author reads this; is your case not covered by the existing state or federal "right to try" laws? LikeLike Reply + Anonymous says: July 22, 2023 at 10:40 am The right-to-try regime is a patchwork of state and federal laws that scream "liability" to drug companies. So it's rare that patients can actually access experimental medicines under that regime because drug companies don't want to take the risk. A proper right-to-try system would involve severely limiting FDA's power to control market access. LikeLike Reply 4. Mike G. says: July 22, 2023 at 9:58 am This is almost too tragic to read and think about, but it is so important that we must all make this so much of a bigger priority than it currently is. Bless you and your loved ones, and everything you have and are and I pray for you and your family to find peace. LikeLike Reply 5. Mike G. says: July 22, 2023 at 9:59 am This is almost too tragic to read and think about, but it is so important that we must all make this so much of a bigger priority than it currently is. Bless you and your loved ones, and everything you have and are and I pray for you and your family to find peace. LikeLike Reply 6. DM says: July 22, 2023 at 10:00 am I am deeply sorry for what you are going through friend. You said it so well - "I have to give back the gift, though with great sadness." LikeLike Reply 7. Timothy says: July 22, 2023 at 10:06 am Hey, feel free to ignore or delete this, I know that most tech people are highly adverse to this message and you'll possibly even think this is 'predatory' and in bad taste, but you know what? I'm going with my right to try because as you say time is running down. I dont know you or where you stand on this issue but I'm also 'in tech', I saw this on hackernews just now, and I'm a theist who puts his faith in one man who said our energy carries on after this shell we call a body dies, and if we trust him he'll be there for us on the other side. I don't often call myself a Christian because I dont follow a 'church' institution but I believe Jesus when he said he came to earth so that all who believed he was here to take away sin and the eternal effects of death and put their trust in him would live again.. I kinda see it as having my HDD powered down, and knowing it will be plugged in again in the future. IDK if any of this resonates but honestly what do you have to lose? there's no dignity in dying, all ego and theories get set aside, who cares what other people think, I'm just saying there's one guy who's offering an eternity after this one and it costs nothing but to ask him to save you before you go. Good luck friend. LikeLike Reply 8. soxie says: July 22, 2023 at 10:29 am Hoping this is news to you and might represent another potential route to get the care you need: https://www.fda.gov/news-events/ public-health-focus/expanded-access. Your story makes me both sad and angry and I hope you figure out a way to get some more time, or at least improve the time you have left. All my best to you. LikeLike Reply 9. Ryan W says: July 22, 2023 at 10:54 am Hi, I'm sorry this cancer has happened to you. It sucks. Hopefully your message will live on and help change the future for others. They thank you. LikeLike Reply 10. Pingback: I am dying of squamous cell carcinoma, and potential treatments are out of reach - Veritas Reporters 11. Z. Alathan says: July 22, 2023 at 11:09 am I agree with you. People need more agency. The presumption that the nanny state always knows best is wrong, and had we had it before, we wouldn't have had half the basic treatments we have today. I hope you enjoy your last days here. LikeLike Reply 12. Anonymous says: July 22, 2023 at 11:12 am Are similar treatments possibly available in other countries? Latin America ex Mexico comes to mind since there's a high rate of this sort of cancer there. LikeLike Reply 13. Pingback: I'm loss of life of squamous cell carcinoma, and doable therapies are out of attain - TOP Show HN 14. John says: July 22, 2023 at 11:27 am I'm sorry hearing you are going through this. It's never too late to make life changing decisions. May God grant you patience and guidance. LikeLike Reply 15. Pingback: I am dying of squamous cell carcinoma, and potential treatments are out of reach by theoldlove - HackTech 16. lasdfj says: July 22, 2023 at 11:40 am "So what might help me?" Nothing. You have solid metastasic tumors. This has nothing to do with FDA, which sadly already approves absolutely non-working drugs. LikeLike Reply 17. Anonymous says: July 22, 2023 at 12:17 pm <3 LikeLike Reply 18. Aramithius says: July 22, 2023 at 12:52 pm Very sorry to hear this. Thank you for your work with this blog, watch I've found to be a source of unconventional wisdom and thought provocation for what must be over a decade now. I've not spoken much, but your words and links have been very valuable to me. Thank you from my corner of meatspace and the Internet, and know that you will be missed. In the meantime, my prayers are with you and yours, for both peace and healing. LikeLike Reply 19. Anonymous says: July 22, 2023 at 12:52 pm Go to YouTube and search for "Dr. Thomas Seyfried". He is a brilliant cancer researcher at Boston College. He has researched cancer metabolism for decades. His approach may seem radical, but has lots of evidence to support it. I have seen many people helped by his approach. Contact him, he can give you the information you need to find a possible way to treat your cancer. Here is one interview Dr. Seyfried had with Dr. Sanjay Juneja, a triple board-certified Hematologist & Medical Oncologist serving as Chief of Oncology Service at Baton Rouge General Hospital: https://www.youtube.com/watch?v=qa3j40c8iAo More about Dr Juneja: Dr. Sanjay Juneja is a triple board-certified Hematologist & Medical Oncologist serving as Chief of Oncology Service at Baton Rouge General Hospital, a social & news media personality known as the 'TheOncDoc' with over half a million followers, and one of fifteen social media doctors participating in the Healthcare Leaders in Social Media Round Table Series for the White House. He has been featured by The Washington Post as well as dozens of national podcasts and regional news channels (PBS, CBS, NBC, NPR), and has given keynote speeches and partnered with American Cancer Society, BeTheMatch, Leukemia & Lymphoma Society, Harvard University, Louisiana Department of Health and several others. LikeLike Reply 20. serf says: July 22, 2023 at 1:09 pm i've read and enjoyed your comments for years; I hope you somehow take solace in that you and your writings have been enjoyed by strangers across the world. LikeLike Reply 21. Pingback: I am dying of squamous cell carcinoma, and potential treatments are out of reach - Latest-News-Events 22. Anil says: July 22, 2023 at 1:34 pm You can see if any of these are available in India. Most of the drug companies operate there and there are many trials going on there. Try contacting HCG Pinnacle, Bangalore. I've been in similar situation with my mom and explored the possibility. LikeLike Reply 23. Svjatoslav says: July 22, 2023 at 1:35 pm Maybe you can bypass FDA and directly reach out to various cancer drug companies (that you trust), possibly even to those that are not in your country. You offer yourself as a test patient and you promise to sign paperwork whereby you and your spouse/family completely indemnify company from any consequences. Also anything that strengthens immune system could help. In worst case, I hope you find peace. LikeLike Reply 24. Anonymous says: July 22, 2023 at 1:38 pm Max Gerson/Gerson Therapy/https://gerson.org/ LikeLike Reply 25. Pingback: New best story on Hacker News: I am dying of squamous cell carcinoma, and potential treatments are out of reach - Cassinni 26. paul says: July 22, 2023 at 2:42 pm Try this. Cram as much vitamin C in you as you can. Eat only fruits with hight vit C and top up with vitamin C supplements. Find out if it's possible to OD on vitamin C. Let me know the results please LikeLike Reply 27. SomeOne says: July 22, 2023 at 3:53 pm This is may be an option. It's honestly not that complex. You can hack this together with a basic college lab worth of tech and a reasonable amount of capital. If you have nothing to lose. Engineered skin bacteria induce antitumor T cell responses against melanoma LikeLike Reply Leave a Reply Cancel reply Enter your comment here... [ ] Fill in your details below or click an icon to log in: * * * Gravatar Email (Address never made public) [ ] Name [ ] Website [ ] WordPress.com Logo You are commenting using your WordPress.com account. ( Log Out / Change ) Facebook photo You are commenting using your Facebook account. ( Log Out / Change ) Cancel Connecting to %s [ ] Notify me of new comments via email. [Post Comment] [ ] [ ] [ ] [ ] [ ] [ ] [ ] D[ ] My latest novel: THE HOOK The Hook: A Novel You should read my latest novel, THE HOOK. 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