Supplements now treatment is over - Advanced Prostate...

Advanced Prostate Cancer

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Supplements now treatment is over

Brysonal profile image
18 Replies

I started my treatments in December 2021 for APC with multiple mets to the skeleton and stopped taking all supplements per MO advice as I was starting early Lu-177.

After a combination of Degarelix, 3x Lu-177, 3 x Docetaxel my PSA was 98% reduced to 0.19 and scans showed a strong response but some activity remained so I followed up with 3x SBRT to T9 which was still showing ( a much reduced 1.5 SUV) and 20 lots of VMAT radiation to prostate and oelvic area and a bracy boost . No tests/ scans post these yet but feeling fine .

Due to see London MO this afternoon re adding Apa.

Does anyone have links to metformun / statin research re informing a discussion on trying to lengthen time to hormone resistance ?

I have been sent turkey tail mushrooms should I take them ? Anything else I should ask my MO to prescribe or get views on?

Currently trying to eat clean ( my natural choice the) but wine is my downfall here!

Any advice for when treatments end please?

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Brysonal profile image
Brysonal
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Seasid profile image
Seasid

I stopped crestor and metformin and making a drug holiday. Metformin reduced my B12 levels and my morning glucose went up. I hate metformin. I don't believe I will go back without talking to an endocrinologist. I know that taking statins increased my risk of diabetes. That is a last think I want. Until now statins did a good job. Professor Epstein said that statins are not proven in PC but professor Joshua said it is good. I hate medication and don't want side effects. So I also stopped even all my supplements. (I may need to improve my B12 levels ruined by the metformin. I will do it very carefully. Too much vitamin B 12 may be harmful with PC?)

Seasid profile image
Seasid

Ask for Nubequa from London Medical Oncologist.

Brysonal profile image
Brysonal in reply to Seasid

Thank you. He said metformin is not proven other than no benefit in breast cancer. My UK insurance will pay for Abi, Enzo or Apa but I will ask about Darolutamide also, Thank you for the reply.

dhccpa profile image
dhccpa in reply to Brysonal

You have insurance in UK even with NHS? How do those work together?

Brysonal profile image
Brysonal in reply to dhccpa

I am fully covered by BUPA.

bupa.co.uk

Mine is a corporate cover but some have personal cover. Its how I got diagnosed as the NHS do not screen for PCA but a PSA test was included in my BUPA annual medical.

My policy only covers UK based treatments and the NHS is still available. I've used it for a couple of PSA tests at the GP surgery and the MDT meetings that discuss my case are NHS too.

My policy includes the BUPA cancer promise and they have been v good for all things I've done in the UK

bupa.co.uk/health/health-in...

MY London MO and RO work for the NHS and contract to BUPA.

dhccpa profile image
dhccpa in reply to Brysonal

Thanks

MateoBeach profile image
MateoBeach

Apalutamide would be fine if darolutamide cannot be approved there. Better than enzalutamide for most.

Personally I take both a statin (for CV protection as well as residual PC benefit by reducing inflammation), and metformin in moderate dose, 500 twice daily. I am not diabetic but like the way it down modulates my appetite and stabilizes blood sugar. No good evidence for it actually fighting PC, but it is not harmful and is inexpensive. Down regulating mTOR seems a good thing anyway. Intensely studied for extending lifespan in many species including small mammals. But results of human trial will take much more time. So no solid claim can be made for it yet in that respect.

Disclosure: I also personally take low dose intermittent rapamycin, 3 mg weekly for mTOR inhibition, sub-immunosuppressive dosing.

I admire your aggressive, and IMO, reasonable approach of combining 3 systemic therapies early on: ADT, docetaxel chemo, Lu-PSMA treatments and now adding in an AAR drug. Very proactive.

You might consider doing a regimen of senolytics in a few months to try to help clear any treatment emergent cancer associated senescent cells (CASCs and SASPs) with at least the very safe Quercetin 1000-1500 mg/d plus Fisetin at similar doses for perhaps a one week regimen. Unproven but seems a good idea to me with essentially zero downside. Dasatinib is a more potent senolytic but has clear toxicity also. PM me if you would like research links and review on these. Paul

Brysonal profile image
Brysonal in reply to MateoBeach

Thank you MB very helpful as ever. He said some get a rash from Apa so I need to see how that goes but had my baseline bloods taken so confirm I am healthy enough to start so should hear tomorrow.

Switching Degarelix to Zolodex was also recommended due to easier injection ( less painful) and 3 monthly). Not sure I like the : monthly idea tbh. My insurer will pay for either so will ask my Finland onco his opinion.

I completely failed to ask about a statin but will when I see him again in a few weeks!

Thank you for all the information I am very interested in trying to do the right things post this 7 months of multiple treatments so appreciate the signposts.

Hope all is going well with you. Following your pioneering journey!

MateoBeach profile image
MateoBeach in reply to Brysonal

And the bonus is that you can go back to Finland next year for follow up. (Take the family, for educational purposes of course.) BTW the long term human study of metformin for human lifespan ongoing, is called the TAME trial. Has been much discussed on the Peter Attia podcast.

jazj profile image
jazj

This is a great comprehensive review that came out less than a month ago:

oncolink.org/healthcare-pro...

And this is another good comprehensive discussion:

ar.iiarjournals.org/content...

Regarding Metformin, in more recent well-designed studies has essentially been debunked as having a significant effect on PCa progression. There are still others out there that are still clinging to the myth of metformin. Although I believe it can be beneficial taken during ADT to help stem off weight gain if I recall. I would go with the opinion of top Oncologists that keep up with the latest data.

ncbi.nlm.nih.gov/pmc/articl....

"Since duration of metformin use did not significantly influence PSA levels, we infer that after a minimal use of 1 year, PSA levels do not significantly decrease with metformin use. Moreover, we observed no difference in PSA levels between patients with and without diabetes. "

This showed men taking starting metformin their PSA increased.

jamanetwork.com/journals/ja...

"Exposed men had lower median (interquartile range) PSA levels before starting antidiabetic medications compared with unexposed men (1.2 [0.7-2.5] vs 1.6 [0.8-3.2] ng/mL). After accounting for baseline differences, PSA levels did not vary from those of unexposed men following exposure to antidiabetic medications. Frequency of PSA testing was higher for those receiving metformin (rate ratio, 1.07; 95% CI, 1.06-1.09) and sulfonylurea (rate ratio, 1.06; 95% CI, 1.03-1.08) but was lower for those receiving insulin (rate ratio, 0.79; 95% CI, 0.77- 0.81)."

"This study’s findings do not support the hypothesis that the inverse association between diabetes and prostate cancer is mediated through antidiabetic medications lowering PSA levels to mask prostate cancer. They do suggest potential detection bias due to fewer biopsies among men receiving antidiabetic medications, which may explain the lower prostate cancer risk in men with diabetes."

Statins have much more consistent statistically significant evidence of lowering PSA or lowering the chance of PCa occurrence or rate of progression. But like most all the supplements here the magnitude of clinical benefit is typically low compared to drug therapies. There seems to be evidence clinically and anecdotally that synergy by combining multiple substances is most beneficial. I personally believe statins, sulforaphane, and possibly modified cirtus pectin have the most promise (also Quercetin has come on my radar and Pomegranate has shown to benefit those with MnSOD AA genotype), but aside from statins, because there's not a lot of potential for profit to be made from the Pharma companies, in most cases there's not a large/wide body of well-designed studies to confirm these other substances are both 100% safe and have a significant positive effect on long-term outcomes (2, 5, 10, 15 years and beyond.)

Regarding statins though there's a ton out there. Here's some examples. It's no silver bullet. Nothing is. Also, the incidence regarding presence and/or severity of side effects in general seem to have been exaggerated in the past. More recent evidence shows a much weaker direct causation between statins and say, muscle soreness. It is fueling the Supp industry to make large profits off of pushing Coq10 supplements which has controversial evidence of being necessary for those taking statins. There's some evidence, like most other antioxidants, Coq10 has potential anti-PCa effects. I only take 20mg Simvastatin though which is not a very high dose. But still decided to take lowest dose Ubiquinol every other day as a precautionary method against Coq10 depletion due to statin use so I guess I got sucked in a little on the Coq10 hype (I never had any side effect taking statins in the first place.)

I think the fascination with natural supplements to battle PCa is a lot of wishful thinking but if some things can only help and not hurt, why not try it. Honestly, any good Integrative Medicine Expert will tell you, Diet (ie Meditteranean Diet), Exercise and body composition probably have more of a clinically significant effect than all the supplements combined. Exercise a lot, don't eat a lot of animal protein especially high in fat and/or processed, and keep your BMI to 25 or below. The latter, at least in the United States, is sadly not very common for older adults.

Statin info:

webmd.com/men/news/20081028....

pubmed.ncbi.nlm.nih.gov/221...

health.harvard.edu/newslett...

sciencedirect.com/science/a...

Dozens more if you search

Brysonal profile image
Brysonal in reply to jazj

Thank you. I got weighed today and after my 7 months of hormone therapy, so many treatments and various chunks of prednisolone during chemo I am 14 stone ( weighed today on my trip to the MO) which is 1 stone ( UK ) up from December when this began so am now aiming to shift that with increases exercise and continuing with clean eating which seems to tie in with your recommendation so thank you. I agree this can not harm at all! Game on!

Seasid profile image
Seasid

Can you ask for Provenge?

Brysonal profile image
Brysonal in reply to Seasid

Not in the UK. I could travel to the USA but UK wise my private MO was Degarelix yes, Advanced Hormone yes and would have done chemo but didn’t push it. However he tells me he is now sharing my experience of 3x Lu-177 ( overseas ) and 3 x Docetaxel with other HS patients so no disapproval of that decision.

My London RO also supported the 20 VMAT plan, and the 3 SBRT s to T9 . She was OK re the 3 x Lu-177s just said ‘it wasn’t in her gift’. The Brachi boost neither of them agreed with but after a long chat with the Finland onco and the surgeon having vast amounts of experience I decided to do that so I am on SOC plus but provenge not available without a USA trip. Never say never though

Seasid profile image
Seasid in reply to Brysonal

Tall_Allen said that he thinks that Provenge is available in Norway. You love to travel to Scandinavian countries. I was living couple of months in Salo in Finland and visited Stockholm. Just hope that the whether is mild. Here is a link to the Norway situation about Nubequa. You may consider to contact the oncologist there. She prescribed Nubequa after Xtandi was not anymore tolerated by her patient. In Australia I also would not qualify for Nubequa. Some people doing fine on Xtandi. Here is a link to Provenge and Nubequa in Norway information: healthunlocked.com/advanced...

Tall_Allen profile image
Tall_Allen

Here's our best data on metformin:

prostatecancer.news/2019/11...

Brysonal profile image
Brysonal in reply to Tall_Allen

Thank you. This agrees with what the London MO said today re no evidence . Appreciate the link.

SteveTheJ profile image
SteveTheJ

You think not drinking wine is going to help? Do tell....

Brysonal profile image
Brysonal in reply to SteveTheJ

Wine is not helping my weight for sure.

It would help if I could stick to one glass but whilst I can easily not start refusing the next glass is really tricky for me!

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