Suren Sehgal's self treatment rapamycin dose regime for colon cancer?

Do someone know what dose regime of Rapamycin Suren Sehgal used when he had colon cancer?

I remember I heard something in one podcast or something where his son Ajai Seghal mentioned it. Because the dose was typed on the ice cream tub or something like that. His mother found that when she looked in the freezer for not so many years ago.

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Good question - I seem to remember it being pretty high in terms of dosing…

His son set up a website on his father - here:

In 1998, Suren was diagnosed with stage 4 metastatic colon cancer after a routine colonoscopy. He completed his work with Rapamune and retired to be close to his grand children in Seattle, Washington in 1999 after 40 years of service to Ayerst. Suren continued to work on Rapamune to the very end as a consultant to Ayerst, completing work on his last publication a few weeks before his death. During treatment at the Starzl Liver Institute at University of Pittsburgh Medical Center, Suren had the chance to meet kidney transplant patients who were surviving thanks to his drug, Rapamune. Even after major liver surgery, he was re-invigorated by what he saw. He was so pleased that his life’s work was saving lives. He believed that even his own life was extended as he took Rapamune to stave off the cancer that had spread to his liver, experimenting on himself. The tumors in his liver were arrested and never grew.

http://www.sehgal.net/surenshistory.htm

http://www.sehgal.net/surensehgal_CV.htm

His son’s email address is at the bottom of the page on the website he set up - perhaps drop him an email:

ajai@sehgal.net

https://www.sehgal.net

Also - I think the podcast you’re talking about is the first on on our podcast list here:

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I search thru the transcript on podcast but could find the dosage but thanks for the email. I will send him a mail and get back here if I get any answer. Thumbs up!

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I emailed Ajai Sehgal and ask if he knew the dose regime which his father used to threat his colon cancer. This was the answer I got.

I found his prescription. It was for 1 mg orally, once a day.

I think it’s good to take in consideration that probably Suren also experimented a bit during his self treatment when it comes to his dose regime but this was a very interesting indication.

On this page we get little bit more insights to the topic

In 1998, Suren was diagnosed with stage 4 metastatic colon cancer after a routine colonoscopy. … He believed that even his own life was extended as he took Rapamune to stave off the cancer that had spread to his liver, experimenting on himself. The tumors in his liver were arrested and never grew. … The cancer that had spread to his lungs was unstoppable even with Rapamune. On the 21st of January, 2003, Suren left this world

Source: Suren's Story

Here is a quote from Ajai in an article

But in 2003, after five years, Sehgal, age 70, decided to stop taking the drug. Otherwise, he told his wife, he’d never know whether it was really holding back his cancer. The tumors came back quickly, and he died within months, says Ajai. “On his deathbed, he said to me, ‘The stupidest thing I’ve ever done is stop taking the drug.’

Source: The discoverer of Rapamycin treated himself with Rapamycin to delay his own death from cancer | NextBigFuture.com

Here is a podcast interview from Radiolab with Ajai and Surens wife Uma and some others with little bit more detail of what happened

AJAI SEHGAL: My father had been diagnosed with colon cancer.
UMA SEHGAL: It was pretty serious.
AVIR MITRA: His doctor said he only had six months to live. But Uma says when Suren got this news…
UMA SEHGAL: He said to the oncologist, I’ll be here for five years. You’ll see. He was very determined; I have to get better. I have to get better.
AVIR MITRA: He tells his wife he wanted to be around for his grandkids. But it wasn’t just that.
UMA SEHGAL: He said a lot has to go on with my work also.
AVIR MITRA: He has so much work that he still wants to do on rapamycin, including his most daring experiment yet.
AJAI SEHGAL: Taking rapamycin.
AVIR MITRA: Taking rapamycin to see if it would treat his own cancer.
LATIF NASSER: So like, his doctor prescribed him rapamycin?
AJAI SEHGAL: No. No, he was getting it from the lab.
AVIR MITRA: He just decided to take it.
AJAI SEHGAL: On his own in pill form.
AVIR MITRA: I believe in this drug, and I think it just might be able to save me.
LATIF NASSER: But why? Like, why would - why would rapamycin help for cancer?
AVIR MITRA: Well, think about it. Right? Like, what does rapamycin do? It stops cells from growing. So why not cancer cells? You know - and no human had ever tried this. It was definitely a long shot. But…
UMA SEHGAL: He said, let me try that.
AVIR MITRA: And then, the six-month mark comes and goes.
AJAI SEHGAL: The tumor action stopped.
AVIR MITRA: Another six months go by, he’s still alive.
UMA SEHGAL: Yes, yes.
AVIR MITRA: In fact, he’s thriving.
UMA SEHGAL: We were traveling all over the world.
AVIR MITRA: He’s flying to conferences for work.
UMA SEHGAL: We went to Japan. We went to China. We went to Thailand. We went to Europe many times.
AVIR MITRA: Another six months, he’s publishing papers.
UMA SEHGAL: He was very busy.
AVIR MITRA: And another, he’s going to his grandkids’ birthdays - and another.
AJAI SEHGAL: And then he just kept living, right?
LATIF NASSER: Oh, my God. Wow. So, like, what actually is happening? So, like, the rapamycin is, like, slowing - it’s, like, freezing the cancer?

AVIR MITRA: So you’re saying that rapamycin reverses Alzheimer’s in mice?
MATT KAEBERLEIN: That’s right.
AVIR MITRA: Wow.
And it’s not just Alzheimer’s. It’s, like, every marker of aging. It’s other diseases, too, like heart attacks, strokes and cancer, which kind of brings us back to Suren. Like, he was given six months in 1998, and now it’s 2002.
LATIF NASSER: Oh, wow, so, like, almost the five-year mark.
AVIR MITRA: Yeah.
AJAI SEHGAL: Five years when he was supposed to have been dead.
AVIR MITRA: He’s still taking rapamycin, and he’s still alive. And so, yeah, maybe some of that anti-aging stuff is happening in Suren’s body.
UMA SEHGAL: Actually, there was no cancer in his colon anymore or the stomach or the liver.
LATIF NASSER: I mean, but, like, how do you know? Like, is there any way of measuring that that’s the thing that’s prolonging his life?
AVIR MITRA: At this point, it’s hard to tell, you know? Like, at one point, he also did chemo for his cancer. So is it the chemo? Is it the traditional meds? Is it the rapamycin? Suren has no idea. That’s a mystery in his mind that’s actually kind of eating away at him.
AJAI SEHGAL: And one day he goes, and he tells my mom - he says…
UMA SEHGAL: How do I know? I feel good, but how do I know if it’s working or not - my drug is working or not?
AVIR MITRA: Is this working, or am I just a fluke? Is it just so happening that I’m living longer than I was expected? But he’s always going to stay the scientist, right? So he’s like, there’s only one way I’m going to figure out if rapamycin is keeping me alive.
AJAI SEHGAL: Uma, the only way I’m going to know if my drug works is if I stop taking it.
UMA SEHGAL: He was experimenting on himself.
AVIR MITRA: And that’s what he does.
AJAI SEHGAL: So he stopped taking the drug. And, you know, six months later…
UMA SEHGAL: It came with vengeance.
AVIR MITRA: The cancer…
UMA SEHGAL: It was - it came into the lungs.
AJAI SEHGAL: It was in his lungs, and he was not going to last very much longer.
AVIR MITRA: And so Uma tells him, like, you made your point.
UMA SEHGAL: I said to him - I begged him to take it.
AVIR MITRA: Just start taking the rapamycin again.
LATIF NASSER: Yeah.
UMA SEHGAL: He said, no, just - it’s OK. Let nature take its course. That’s all.
AJAI SEHGAL: He worked until the day he died. He - the day before he died, he was still writing a paper, in bed…
UMA SEHGAL: Without oxygen on his face.
AJAI SEHGAL: …Writing a paper on advocating the antitumor properties of rapamycin.
UMA SEHGAL: Yeah.
AVIR MITRA: Suren died on January 21, 2003.

Source: The Dirty Drug and the Ice Cream Tub

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Its great that he replied back so quickly. I hope you told him that his father is becoming increasingly famous because of his rapamycin work. I wonder if the son takes rapamycin for aging… I’ll send him an email and invite him to join us here.

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Great work Krister. Thanks.

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Here is also one side effect of Rapamycin that Suren Seghal experienced

The only side effect he suffered from was canker sores, a relatively small price to pay.

Source: Does a real anti-ageing pill exist? - The Economic Times
Source: The discoverer of Rapamycin treated himself with Rapamycin to delay his own death from cancer | NextBigFuture.com

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A very cool read, everyone should read it.

What a genuinely noble man. (I hope this does not sound silly, I really mean it)

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Krister, there seems to be conflicting information.
The Radio Lab interview says:
“LATIF NASSER: So like, his doctor prescribed him rapamycin?
AJAI SEHGAL: No. No, he was getting it from the lab.
AVIR MITRA: He just decided to take it.
AJAI SEHGAL: On his own in pill form.”

If he was making the capsules himself, then the 1mg/d is actually about 1/3 of 1mg since non-encapsulated sirolimus is only about 1/3 bioavailable compared to encapsulated (generic and brand-name) commercial tablets.

Can you ask Ajai Sehga for clarification?
Was he compounding it himself or getting it through a pharmacy?
Did he start out one way, then switch to another? If so, how long on each?

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@AjaiSehgal is here and perhaps can comment on his father’s use of rapamycin for his colon cancer.

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Great observation and big thanks for sharing your knowledge in the field regarding bioavailability, Sajad!

We will probably not exactly know how Suren Sehgal self-experimented with Rapamycin. The best would have been if there existed some kind of notebook in which he logged dose regime, side effects and other thoughts in the field. @AjaiSehgal do you know if your father had a notebook like that? :pray: