I am new to this site and to this forum. It has been a wealth of information. I know there have been plenty of other threads, regarding supplements, and how we take care of ourselves, but some of them have aged and just wanted to start a fresh one.
I am 53 and was diagnosed with stage four PC in December 2022. I had no idea that I even had it until I started having really bad back pain a few weeks prior. I had the biopsy done which was a real joy, since there was no anesthetic and it turned out I was a Gleason nine. The PC had metastasized to my back and ribs and shoulders according to the bone scan. My PSA was 108. I started on Firmagon and my PSA kept rising up to 134 and my alkaline phosphatase was almost 350. After that first month I was switched to Lupron, which brought my PSA down to 53. I then added abiraterone and prednisone which has brought my PSA down to 1.4 in July and my last test this month it went up to 2.0 but I have read there can be a margin of error in the PSA test so I’m not too worried.
I have read on here that some of you are still doing well on the same three medication‘s for some years now which I’m hoping I can be one of those as well.
I am curious how other people are maintaining their diet if any, and what they take for supplements. I do a lot of research and don’t add anything to my regimen that doesn’t have at least a few studies behind it. I currently do 50 mg of IV vitamin C every week plus the supplements I have listed here. My alkaline phosphatase has come down to 78 which is great however my red blood cell count and hemoglobin keep dropping every month and my glucose is up to 156. Is anybody having problems with their red blood cell count and glucose levels as well and how are you handling it?
Anyway, sorry for the long post. I look forward to hearing what supplements everyone takes and what other strategies you employ.
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StayinAlive8
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Thanks for sharing all this Stayin! I'm actually quite curious in particular about Berberine. Also though I wonder why you haven't also had chemo such as Docetaxel - that would make it triplet therapy for you.
the absolute best supplement you can take is serious weight training 3 times a week for minimum hour each day. It will keep the meds from wasting away your muscle, it will give you energy, it will make you feel much better and it will extend your life with little or no risk.
Absolutely! I do 30-45 minutes, twice a day, on a stationary recumbent bike and also workout with 13 lb. dumbbells twice a day. I've built muscle and increased my bone density by 5%.
I'm 60 years old PC Stage 4 Gleason 4+5. No symptoms. And I've received 3 of of 6 infusions of Docetaxel, 1 shot of Zoladex (every 3 months, and have been on Bicalutimide for almost 2 months now (2 tablets twice per day).I feel tired most of the time but I go for a 1.5km walk most days and also do 20 pushups, 20 situps and 20 squats. I can barely do 20 pushups and mostly don't go for the full range of motion - before I was able to do 2 sets of 25 pushups at full range and with vigor.
How is it that a lot of you are able to main tain a full workout regimen?
You seem to accept the battle, so do I and let’s go!
First, I recommend talking to your doctors and ask for triplet therapy - adding chemo to your ADTs. Without Docetaxel I’m not sure if I would be alive today.
Then add exercise: running or walking or cycling, what ever is good for you. And weight lifting to keep your muscles. Exercise slows down progression.
Regarding supplements: I trust the APP Cronometer. It’s free, you don’t need gold version. You put in what you eat and it tells you if you are short of anything like calcium, magnesium, iodine, selen etc. I just supplement, whatever’s missing to reach my daily limit.
And I recommend switching to plant based diet plus fish and stay away from all meat & dairy.
If you have more questions, I’m happy to respond. And I’m not a doctor, just a warrior like you.
WOW - thats a whole lot of supplements. My worry is how do you know if they are helping or harming when they are taken together. I think a lot of them can be included in a daily diet.
question on the "staying away from dairy"....Because we take Calcium supplements and dairy is so important to bones why the suggestion to stay away from dairy?
Good list. Your Berberine will probably be a decent replace for metformin.
The only thing I would add is watch your oils. As Snuffy Myers directed: Olive, Avocado or Hazelnut. Stay away from all the rest; which means you need to be careful with packaged goods and outside prepared products.
I rarely enter discussions here, but your posting is exceptional for the details you provide and your drive to fit you namesake and stay alive.
You write, "I do a lot of research and don’t add anything to my regimen that doesn’t have at least a few studies behind it." In terms of research, to do know of randomized control trials for the benefits of supplements you are taking in combination with your prescription medications? It may be misleading to assume that these supplements are necessarily beneficial. Many may in fact have some toxicity when taken in combinations with other supplements and prescription drugs.
That leads me to ask three quick questions:
1. How much do you spend overall on supplements per month?
2. Has your medical oncologist reviewed this list with you and endorsed all of it?
3. As an N=1 experiment, would you consider cutting back on the supplements to see if that doesn't lead to better hematological status and glucose control?
I started Lupron, abiraterone and 5mg of prednisone July or 2022. I was diagnosed with greason 9 and had a few mets. My MO dropped the prednisone to 2.5 mg becuse of an increase of PSA from 1.1 to 2.2 intending to change my medication but was not sure the PSA reading was real as he was seeing others with unexpected PSA values. It turned out that it was a lab error and I stayed on same meds but stayed with prednisone at 2.5 mg (mostly as my preference, which was OK with MO).
My glucose levels shot up to over 200 for a couple of months and settles to "normal" at about 140 - 150. This transient messed up my eyes and my vision is still changing.
In retrospect, I wonder why a glucode medication is not given automatically when this regimen is started. Since your glucose is in the150 area, you may want to deal with it proactively.
about diet ... I did consult with a cancer dietician. Her advise was to eat a balanced meal and trend toward a mideteranean diet. Supplements were rather discouraged.
I've done about half your supplements and others besides. Also fenben and I'mectin. Plant based diet, no alkihol. I jiggle about 20 supps at any given time, don't like taking more caps than that.
Thanks for the full disclosure on the supplements. I'm also taking Lupron, Abi (1000mg), and prednisone (5mg). Also doing whole foods-plant based (no meat, no dairy, no fish). My initial bone scan revealed pretty low on the density but just in range. My mo started me on 1000mg Calcium (500mg max at one time) and D3 @ 1000u (but I take 2000iU, just to be sure. Also taking 1200mg Turmeric and CoQ10 @ 300mg. Also take a daily B12 (1000mg?).
I've read somewhere (sorry, it was a clinical study but I can't cite it) that D3 is detrimental when taken in excess. You seem to be taking a large amount for some reason.
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