Do you mind sharing what your PSA is showing?

I agree - and no medications of any type help ACE-I angioedema. I see a lot of my colleagues giving epinephrine, steroids, h1/h2 blockers. The more “clever” ones try TXA, FFP and icatibant. Sadly none of this helps. It’s all time and airway management, and making the decision to place an airway or wait and see.

As the mechanisms are totally different, getting angioedema from rapamycin (which I’ve never seen) is an independent item from ACE-I and taking both together would have no feasible mechanism to increase risk of either item causing Angioedema. The risk would be additive with the highest risk being the ACE-I and the lower risk being Rapamycin being the cause of angioedema if one were to develop it while on both.

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I think this may happen with ARBs like Losartan as well.

To prove a linkage between my cancer and Agent Orange (AO) (2-4-5-T / 2-4-5-D) conclusively would be difficult. As time goes by it might actually be provable if there is a genomic change that is linked to dioxin. (Note: Neither compound are carcinogenic, but both contained dioxin).

If I had been military, in an area where AO was used then my cancer would be presumed to be caused by AO by the VA.

“Complications from Agent Orange exposure were life-threatening and caused death. Over 300,000 U.S. veterans and over 400,000 Vietnamese people died from exposure to Agent Orange from 1962 to 1971.Feb 10, 2023”

Even if my cancer could be linked to AO, it would be difficult to sue the manufacturer since the US government forced (really, it was a mandate) nine different manufacturers to create it.

The take-away is, probably I’ll never be able to conclusively link it to my exposure.

As for time-linkage, “The mean time from exposure to Agent Orange was 407 months.” Therefore, the median likely age that I would have developed CaP from AO would be around age 54. So, it could be that AO was not the cause. Or it could be that I’m simply farther out on the bell curve.

I’m quite happy to have developed CaP nowadays, as the state of medicine twenty years ago was pretty awful, compared to today, which is, if nothing else, much “gentler.”

There is no history of prostate cancer (or any cancer) in my family history. I never smoked and I do find it interesting that for many years I have taken Rosuvastatin and have used Celecoxib, both which are anti-proliferative.

My PSA when discovered was 54.10. It is metastatic, but locally, not distant.

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54.10 I’m curious, why do you ask?

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Actually have a family member he had it 90, told him he MUST have it checked and he has stage IV spread to bones, but no other organ

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It’s complex. If it’s spread to the pelvis or just one or two areas, it’s still highly treatable, but spread to distant sites, like bones/lungs/liver terrified me. With the recent PSMA-pet scans now it’s highly quantifiable. Some new therapies such as the immunotherapies are like magic bullets, but that is rare. Yes, he must have it checked and treated, for if not, there will come a day when all of a sudden his legs stop working because of a vertebral fracture due to a metastasis.

You might want to do one of the genetic tests to see if you have any genes that put you at greater risk, or not.

Oh, you bet i have the gene, and I know for certain that if I do nothing, I will get PC. My father and grandfather both had it albeit at later age 81 each. But I’ll do everything in my power to keep it at bay. for now, I’m doing 5mg of Cialis, eat organic only (may or may not help, but can’t hurt) and I’m also exploring the finasteride 1mg.

I am afraid some of these prostate meds tend to feminize men. I don’t know about finasteride but I’ll need to do more research on it. Don’t know if there is any other meds that can be taken as a precaution against PC?

There are actually many substances that slow or make it difficult for a cancer to metastasize. Lots of them actually, though not a single one sticks out as a true preventative (other than finasteride, though that is a double-edged sword). Metformin sticks out, especially if your BG is elevated, as in not ideal, but there are others, such as aspirin, rosuvastatin, celecoxib, and then I take Quercetin (1g/day), Curcumin 1g/day (95% curcumin w/ Bioperine) ALA, 1600-2000mg; NAC 1500-2500mg/day, Berberine, all which have various effects that are anti-proliferative.

I suspect that if you are good for another decade, there will be leaps and bounds in terms of treatment that are specific to what sort of cancer you’ll get.

And yes, the ARTS do feminize men. Monday I see a med oncologist and I want 10mg Tamoxifen from the start and if M’boobs start, then irradiation to the chest, no Dolly Parton boobs for me. I hope that diligently working out forstalls much of the negative effects. I work out 5-days a week, 40 minutes cardio + an hour each time upper or lower body. Once on the ART meds I hope to increase that. However, w/ all that come fatigue, so while we need to work out more, our brains say: “we need to sit on the couch more.” Ouch.

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I’ve never taken metformin but after 21 months on rapa I can confidently say my weight set point is 6% lower than my previous normal. It took close to a year for this to happen but I wasn’t confident it was permanent until recently. I am able to get my weight up a couple of pounds by eating a lot of food (for me). I basically have to eat 500 calories more than my appetite calls for and about 700 more than Fitbit and cronometer estimate a woman my age/size should eat for weight maintenance. If I go back to a more normal calorie amount my weight pretty quickly goes back down. It’s happened 3 times this year.

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I have exactly the same and it started approximately after 1 year on Rapamycin. Now, 14 years later, no matter how much I eat or if I discontinue Rapamycin for some time (tried once to break for 4 months), the weight doesn’t move from the set point (109-110 lbs). I was told that it was Metformin, but I tried Metformin only recently for 3-4 months the most.

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I’m glad to hear I’m not the only one although sometimes it’s a bit exhausting keeping up with eating and hearing comments about needing to gain weight! I suppose there are worse problems in life though. On the bright side we have ample opportunity to get optimal micronutrients!

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@LaraPo I find this very interesting, and actually quite helpful (if proved to be true, and of course if it might be the case for other people also) but my question is though: Since you are very health conscious are you sure that you ate “more” than normal or “bad” foods (i.e. sweets and burgers) to see if you really won’t be able to gain weight? Sorry to nickel and dime your opinion, but just trying to assess if such effect is indeed what it seems it is. In other words, you wouldn’t gain weight either with or without RAPA if you eat a very healthy diet and also exercise.

I never eat unhealthy foods. Burgers? Are you kidding? I’m a vegetarian/pescatarian for over 40 years. Never have added sugars. It’s a misconception that one has to eat unhealthy foods to gain weight. Re eating bigger portions or more frequently, I tried it without any success. My weight is 110 lbs, 5’3” tall corresponds to a healthy BMI of 19.5. I am not trying to add any fat, but rather to increase muscles. And it’s very difficult to do either because of the diet or Rapamycin or both.

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That I’ll agree to…

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