This is your best work yet, Elliot. What an incredible story, and no one could have told it better. Perfect mix of profile, science, and glimpse into a better future. Bravo man!
This is really compelling work. The way information management principles from software developemnt translate into healthcare here is kinda wild. What really gets me is the gap between what's technically possible with diagnostics today and what actually gets deployed in standard oncology pathways. I've seen similar friction in my own work trying to implement data pipelines where institutional inertia meets technical capability. The "forward deployed tissue extractors" concept actually makes me laugh because it's so accurate to how these systems resist even basic information flow.
Compelling and very true that one must be responsible for keeping oneself alive. Joe Tippens did exactly that and with inexpensive repurposed drugs, a story possibly more remarkable than this one. May Sid and Joe live long and inspire many other cancer success stories.
This essay presents Sid's self-treatment plan as saving his life, but the recurrence happened in 2024 and so most patients would still be alive at this point, without these experimental treatments?
My son died of osteosarcoma in 2024.. he was 8. Since Owen got cancer I have known dozens of kids who have also died. It spreads to their lungs and they suffocate to death. Some live fighting for 5 or 6 years but very few that relapse to the original site don’t continue to fight relapses over and over until they die.. whether thats 1 or 6 years. Yes, too early to tell. But also the treatment he did targeting his tumor without side effects is amazing.. and he has avoided TKIs and chemo which is what all these kids get. Both are horrible. TKIs are oral, but the side effects are so terrible that most kids stop it. Nothing is known to be curative in relapsed osteo- they given TKIs and chemo but they have no idea how to figure out who dies and who doesn’t. In the osteo world, his story is inspirational
a cautionary note for readers who want to believe resolve is a good match for any adversity. Sid’s story is inspirational but may or may not sketch out the future of therapies for cancer patients who have exhausted standard treatments. I write as a patient myself, still recuperating from 6 rounds of chemotherapy for advanced prostate cancer. not sure what I’ll do when I exhaust standard treatments. I say “when” rather than “if” since advanced prostate cancer is still, for good reason, considered “incurable.”
Do you know how to get in touch with Sid? I’m a biologist, my mom is also a biologist. My mom was diagnosed with pancreatic cancer late 2024. We also went into founder mode, conceived a novel method to improve the efficacy of chemo for many cancers, and my mom’s use of this method has coincided with an extreme response.
Power in numbers - maybe we can connect a GitLab for cancer?
I remember listening to Sid's conversation with Eric Ries last year. His humanity, focus and determination shone through. Thanks for going deeper on this Elliot!
Incredible story! The part about having to hire people just to get his own data out of a hospital is unfortunately like celebrating one of those GoFundMes for someone facing medical bankruptcy. It’s a failure of our system and a travesty that it takes anything more than “I would like my records please”.
These last 138 days as a mother and Air Force veteran senior leader I’ve felt like the mother version of the Kool-Aid Man! I was on SWAT called EST my first 5 years in the Air Force and sometime years later after my troops and leaders coming back from Iraq started getting cancers way too early, I started information gathering and researching. Years later we veterans fought for the PACT Act. Now today I’m 138 days into my 15 year old daughter’s osteosarcoma battle. Her prognosis at the moment is good! I went SWAT and Kool-Aid mama mode to demand Takeda and Esteve get her MEPACT ( a drug that has made several big pharma companies anywhere from $75 million to $220 million through divestment and acquiring it. All while approx 1/3 of the kids died here in USA during these 16 years it has been approved and used in Europe. Is it 100%? No…
But EVERY CHILD on earth battling Osteosarcoma either localized or if doctors deem it’s worth trying even with spread to lungs
Well it should be available and lowest cost possible!
Then there’s the tests I didn’t even have to ask my daughter’s oncologist for (she too battled cancer as a teen) she didn’t think we stood a chance at MEPACT
Well don’t ever tell a retired Senior Master Sergeant who trained thousands and led hundreds more her last years in the service that something is impossible! A real leader leads in the trenches with the people and cares immensely for them and their family and follows through.
This article hits so may great points! And hundreds of American families with Osteo warriors aren’t told at diagnosis ALL the options, they aren’t automatically given testing for genomics of the tumor, immune profiling, etc. and we need these mandatory standard practice at week of biopsy at a minimum to name a few. We need billionaires like Sid who have leverage in big tech to keep fighting the fight. But please bring us parents and our kids onboard! So many of us ask daily at treatment for clinical trials, research studies. I reach out to 4-5 top experts a day across the world as a founder trying to help save my child and other children because as humans (as adults especially) we owe this to the kids!!!
💪 I’m so grateful a mother who sadly lost her beautiful son last year shared Sid’s recent podcast and got him on my radar as his own best advocate and hopefully one day beside us as a staunch advocate for the kids!!!
Osteosarcoma can be healed! We’ve got so many kids waiting! Dogs too!
Let’s do this!!! Call me! Send me to help! I’ll serve every day for the rest of my life for Naomi and any family!
Terrific story, thank you for sharing! And congrats to Sid on this great progress.
Re: this statement, "Because the diagnosis with osteosarcoma at his age is rare, he didn’t meet the inclusion criteria for any clinical trials", I think that I may be missing something? A quick search on clinicaltrials.gov reveals 445 clinical trials for osteosarcoma that accept 45 year olds.
That included completed and not enrolling trials. There are maybe 2 dozen that are actively enrolling and testing a treatment intervention and most you need measurable disease and are 1 drug. 1 drug is very unlikely to cure relapsed osteosarcoma, but there are apparently rules about studying combinations in kids (most patients are kids so adult trials usually are kid trials that extend up to adults). give the kids a chance act hopefully will one day pass so we can actually get trials that might work. Even a cell therapy trial- if you wait until there’s measurable disease and then make the patient stop treatment for a washout period… what are the odds the trial will show anything? The trials are a joke.
Wow -- that truly is an incredible journey. I share some of the same frustrations in accessing advanced technologies and clinical trials for my patients. We are making progress, but can't come fast enough.
What an incredible story, Elliot! Sid’s determination to keep advocating for himself is deeply moving. It’s a powerful reminder that we have a voice in our healthcare.
Thank you for the very interesting and inspiring story. I'm a radiation oncologist and appreciate the sentiment, frustration, and promise the story tells. That said, one thing reigns true. Cancer is incredibly complex, diverse, and fickle. I've seen totally incurable patients cured, and curable patients die of a cancer with a 95% survival rate. I've also seen incredible advances throughout the course of my career and suspect and very much hope these advances continue.
It is very nicely written! At first it seemed too long for me but only I started, I couldn't stop. i'm glad there are people who have the courage and motivation to actually do something - and I'm happy that lately we hear so much about them!
From the Military Aviator Coalition for Health (MACH Coalition), I’m its founder / director and a retired AF COL, F-15 pilot. Mil/Vet flyer cancers are through the roof. In advocating for a very different screening + detection regime for US Mil/Vet flyers in DoD & the VA, I’m interested in how we can apply Sid’s out of plane thinking (the way good fighter pilots think & fly) to not pleading with the status quo but defining an alternate status quo for enhanced diagnosis and when needed, new ways for us to think about treatments. Thank you for telling this story.
This is a very inspiring story with detailed science that showcases the complexity of cancer and the challenges patients face. Thank you for writing such a great piece!
This is your best work yet, Elliot. What an incredible story, and no one could have told it better. Perfect mix of profile, science, and glimpse into a better future. Bravo man!
This is really compelling work. The way information management principles from software developemnt translate into healthcare here is kinda wild. What really gets me is the gap between what's technically possible with diagnostics today and what actually gets deployed in standard oncology pathways. I've seen similar friction in my own work trying to implement data pipelines where institutional inertia meets technical capability. The "forward deployed tissue extractors" concept actually makes me laugh because it's so accurate to how these systems resist even basic information flow.
Compelling and very true that one must be responsible for keeping oneself alive. Joe Tippens did exactly that and with inexpensive repurposed drugs, a story possibly more remarkable than this one. May Sid and Joe live long and inspire many other cancer success stories.
Recurrent osteosarcoma without metastases has 41% survival after 5 years: https://pubmed.ncbi.nlm.nih.gov/15737563/.
This essay presents Sid's self-treatment plan as saving his life, but the recurrence happened in 2024 and so most patients would still be alive at this point, without these experimental treatments?
My son died of osteosarcoma in 2024.. he was 8. Since Owen got cancer I have known dozens of kids who have also died. It spreads to their lungs and they suffocate to death. Some live fighting for 5 or 6 years but very few that relapse to the original site don’t continue to fight relapses over and over until they die.. whether thats 1 or 6 years. Yes, too early to tell. But also the treatment he did targeting his tumor without side effects is amazing.. and he has avoided TKIs and chemo which is what all these kids get. Both are horrible. TKIs are oral, but the side effects are so terrible that most kids stop it. Nothing is known to be curative in relapsed osteo- they given TKIs and chemo but they have no idea how to figure out who dies and who doesn’t. In the osteo world, his story is inspirational
a cautionary note for readers who want to believe resolve is a good match for any adversity. Sid’s story is inspirational but may or may not sketch out the future of therapies for cancer patients who have exhausted standard treatments. I write as a patient myself, still recuperating from 6 rounds of chemotherapy for advanced prostate cancer. not sure what I’ll do when I exhaust standard treatments. I say “when” rather than “if” since advanced prostate cancer is still, for good reason, considered “incurable.”
Do you know how to get in touch with Sid? I’m a biologist, my mom is also a biologist. My mom was diagnosed with pancreatic cancer late 2024. We also went into founder mode, conceived a novel method to improve the efficacy of chemo for many cancers, and my mom’s use of this method has coincided with an extreme response.
Power in numbers - maybe we can connect a GitLab for cancer?
More info here:
https://alexwasburne.substack.com/p/the-health-of-our-people
I remember listening to Sid's conversation with Eric Ries last year. His humanity, focus and determination shone through. Thanks for going deeper on this Elliot!
Agree with Packy. Your best work to date.
Incredible story! The part about having to hire people just to get his own data out of a hospital is unfortunately like celebrating one of those GoFundMes for someone facing medical bankruptcy. It’s a failure of our system and a travesty that it takes anything more than “I would like my records please”.
These last 138 days as a mother and Air Force veteran senior leader I’ve felt like the mother version of the Kool-Aid Man! I was on SWAT called EST my first 5 years in the Air Force and sometime years later after my troops and leaders coming back from Iraq started getting cancers way too early, I started information gathering and researching. Years later we veterans fought for the PACT Act. Now today I’m 138 days into my 15 year old daughter’s osteosarcoma battle. Her prognosis at the moment is good! I went SWAT and Kool-Aid mama mode to demand Takeda and Esteve get her MEPACT ( a drug that has made several big pharma companies anywhere from $75 million to $220 million through divestment and acquiring it. All while approx 1/3 of the kids died here in USA during these 16 years it has been approved and used in Europe. Is it 100%? No…
But EVERY CHILD on earth battling Osteosarcoma either localized or if doctors deem it’s worth trying even with spread to lungs
Well it should be available and lowest cost possible!
Then there’s the tests I didn’t even have to ask my daughter’s oncologist for (she too battled cancer as a teen) she didn’t think we stood a chance at MEPACT
Well don’t ever tell a retired Senior Master Sergeant who trained thousands and led hundreds more her last years in the service that something is impossible! A real leader leads in the trenches with the people and cares immensely for them and their family and follows through.
This article hits so may great points! And hundreds of American families with Osteo warriors aren’t told at diagnosis ALL the options, they aren’t automatically given testing for genomics of the tumor, immune profiling, etc. and we need these mandatory standard practice at week of biopsy at a minimum to name a few. We need billionaires like Sid who have leverage in big tech to keep fighting the fight. But please bring us parents and our kids onboard! So many of us ask daily at treatment for clinical trials, research studies. I reach out to 4-5 top experts a day across the world as a founder trying to help save my child and other children because as humans (as adults especially) we owe this to the kids!!!
💪 I’m so grateful a mother who sadly lost her beautiful son last year shared Sid’s recent podcast and got him on my radar as his own best advocate and hopefully one day beside us as a staunch advocate for the kids!!!
Osteosarcoma can be healed! We’ve got so many kids waiting! Dogs too!
Let’s do this!!! Call me! Send me to help! I’ll serve every day for the rest of my life for Naomi and any family!
Terrific story, thank you for sharing! And congrats to Sid on this great progress.
Re: this statement, "Because the diagnosis with osteosarcoma at his age is rare, he didn’t meet the inclusion criteria for any clinical trials", I think that I may be missing something? A quick search on clinicaltrials.gov reveals 445 clinical trials for osteosarcoma that accept 45 year olds.
https://clinicaltrials.gov/search?cond=Osteosarcoma&ageRange=45y_45y
That included completed and not enrolling trials. There are maybe 2 dozen that are actively enrolling and testing a treatment intervention and most you need measurable disease and are 1 drug. 1 drug is very unlikely to cure relapsed osteosarcoma, but there are apparently rules about studying combinations in kids (most patients are kids so adult trials usually are kid trials that extend up to adults). give the kids a chance act hopefully will one day pass so we can actually get trials that might work. Even a cell therapy trial- if you wait until there’s measurable disease and then make the patient stop treatment for a washout period… what are the odds the trial will show anything? The trials are a joke.
Wow -- that truly is an incredible journey. I share some of the same frustrations in accessing advanced technologies and clinical trials for my patients. We are making progress, but can't come fast enough.
What an incredible story, Elliot! Sid’s determination to keep advocating for himself is deeply moving. It’s a powerful reminder that we have a voice in our healthcare.
Wow just wow… story, takeaways, insights. Need to come back to this one.
Thank you for the very interesting and inspiring story. I'm a radiation oncologist and appreciate the sentiment, frustration, and promise the story tells. That said, one thing reigns true. Cancer is incredibly complex, diverse, and fickle. I've seen totally incurable patients cured, and curable patients die of a cancer with a 95% survival rate. I've also seen incredible advances throughout the course of my career and suspect and very much hope these advances continue.
It is very nicely written! At first it seemed too long for me but only I started, I couldn't stop. i'm glad there are people who have the courage and motivation to actually do something - and I'm happy that lately we hear so much about them!
From the Military Aviator Coalition for Health (MACH Coalition), I’m its founder / director and a retired AF COL, F-15 pilot. Mil/Vet flyer cancers are through the roof. In advocating for a very different screening + detection regime for US Mil/Vet flyers in DoD & the VA, I’m interested in how we can apply Sid’s out of plane thinking (the way good fighter pilots think & fly) to not pleading with the status quo but defining an alternate status quo for enhanced diagnosis and when needed, new ways for us to think about treatments. Thank you for telling this story.
This is a very inspiring story with detailed science that showcases the complexity of cancer and the challenges patients face. Thank you for writing such a great piece!