About 3.5 years ago I developed several basal cell carcinomas after two years of pretty regular rapamycin, at doses between 6-8 mgs per week. I too was concerned that rapamycin might have played a role, especially after reading a post on a (different) forum by a doctor who reported that skin cancers were common among transplant patients taking rapamycin. But who knows?
These appeared at age 61, and after a youth spent outdoors in the blazing California sun. Both of my parents also had basal cell carcinomas. But it spooked me, and I now take a lower dose and usually at intervals of 14-21 days in order to avoid too much immunosuppression.
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I think the period between dosing is the key thing. If you halve the dose that sort of adds 60 hours per dose of less immune suppression. If you reduce the frequency from say weekly to 14 or 21 days you reenable the immune system to a greater extent and for longer.
I have anecdotal evidence that citrate may be of use wirh some cancer.
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Taking Astaxanthin while on Rapamycin might make sense, as Astaxanthin protects the skin from UV lights etc.
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Thanks, that’s useful to know.
Thanks, that’s interesting. What kind of citrate?
Its my citrate protocol which is a mixture of Sodium, Magnesium, Potassium and Calcium. I don’t promise anything, but it cleared a precancerous spot for someone who was taking it. (not me). It should have a positive effect on aberrant splicing. However, it has not been through any rigorous testing and I don’t promise anything (at your own risk).
Best to read the citrate protocol thread.
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My nephrologist constantly reminds me not to be in the sun bc I’m on rapamycin for 14 years. I never leave home without a sun hat in summer. At almost 69 I still don’t have skin cancers. It makes sense to take astaxanthin for sure.
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Are you saying that you’re advised to stay out of the sun BECAUSE you’re on rapamycin? Meaning you’re more at risk on rapamycin?
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AFAIK @LaraPo is on a daily dose.
My own view is I wish to only have an effect from Rapamycin from time to time. I am currently working on a 21 day schedule, but I may make it less frequent.
Exactly! I’m more at risk because of rapamycin and immune system suppression by it.
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I’m not on a daily dose for several years already (even though a daily dose is prescribed). I take a total of 2 mg spread within 4 days, then I break for 7-10 days. If I take more than 2 mg, let’s say 4, then my break is 2 weeks. When I was on a daily dose I had unwanted side effects. With my current regiment I have no side effects in addition to improved biomarkers.
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Whatever you do, you should follow your doctor’s advice on the dosing schedule to minimize risk of transplant rejection. That’s more important than anything else. Being influenced on people taking it for different reasons is a bit foolish in my opinion. You seem to be susceptible to listen to people too much that don’t have any expertise in the field, too.
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It’s a good advice. Thank you. I’m not influenced by other ppl opinions at all. Instead I’m influenced by my biomarkers. I slightly changed the prescribed protocol many years ago and the one that I’ve been following works the best. My nephrologist says “all my patients would envy your bloodwork so continue doing what you are doing”. We are all different and our transplants are also very different - some have ideal match, some don’t - but protocol is the same for everybody. It takes years to carefully figure out what works best. I believe that time will come when protocols will be calibrated for each person. We need an AI involvement in this and other fields as well.
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Still not following doctor’s advice on dosing schedule, but you do you. I would at least ask them if it’s okay.
I don’t ask only because I know that for a matter of liability no doctor would approve a deviation from a generally accepted protocol.
For example, 10 years ago, I was on tacrilimus in addition to rapamycin. That gave me horrible burning migraines for days. I was sent to a neurologist for that. On my third visit, probably because of compassion, he told me that it’s a direct effect of tactolimus. I took that to my nephrologists and asked to eliminate tacro from my protocol. Guess what? The answer was “no”. Even more, that young neurologist got reprimanded for advising me on that. I even had to write a letter in his defense stating that he never told me to quit Tacrolimus and advised that I consult with nephrologists. I did stop Tacrolimus however by my own decision after signing couple forms releasing them from liability. In the result, my migraines stopped three days later and never retuned. My all biomarkers greatly improved. My brain fog disappeared and memory was restored. It was a good lesson to me. I wish concierge doctors were more affordable. A regular specialist simply doesn’t have enough time (15-20 min is nothing) to individually develop each patient’s protocol.
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I had nearly the identical experience this week.
I began using Rapamycin 5 months ago on a 3 months, one month off, cycle. I’m taking 5 mg once per week.
I’m relatively certain my small case of basal cell carcinoma predates the beginning of my time on Rapamycin, so I’m not inclined to blame the cancer on the drug.
My thoughts are as follows (I’m not a doctor):
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When I get my surgery I’ll stop taking Rapamycin until the wound is fully healed. It’s my understanding that Rapamycin inhibits the immune system from dealing with bacterial infections and I don’t want to increase my risk of a post operative complication.
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My understanding of the literature suggests that Rapamycin should inhibit the growth of future carcinomas, so I’ll resume my protocol after the wound heals.
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If I have a new case in a different location in the next year, I’m going to stop and reevaluate. I probably won’t restart my protocol unless I have very compelling evidence to support restarting.
The way I see it, this is all a gamble. Absent clinical data from large mammals or better still humans, we’re all like gamblers entering a casino when we take Rapamycin for longevity.
The trick in gambling is not to get caught up in emotions and chase a lossing strategy. You should always establish a hard line you won’t cross ahead of walking through the door, or you’ll end up gambling the rent money!
For me the hard line is a reoccurance in one year.
I know this is an arbitrary line, but I think it’s better than no line.
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Sorry to hear. All interventions, including those for aging, are best seen in terms of probabilities. What may be true at the population level will vary at the individual level.
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Thank you very much for your reassuring reply.
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The lymph is still there but much less, so it’s effectively gone down. Thanks.
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That’s interesting. Thanks. A good reason to continue metformin anyway.