I was diagnosed with advanced PC with several mets to the pelvic bone, in June 2018. So far, in my short experiences with doctors, they are concerned generally about supplements that may negatively interact with my new hormone therapy (Elligard with Zytiga+prednisone). I have been on this therapy for just a few weeks so far, with minimal side effects.
I have been taking several supplements (calcium, fish oil, green tea, pomegranate, gaba, l-theanine, Zyflamend, lycopene, turmeric, D3, CoQ10, and Life Extension's immune Senescence protection formula). But, I haven't gotten any real useful advice from the doctors as to what to take, except for telling me to stop taking my daily multi, prostate formula (beta-sistosterol, saw palmetto, etc,) and any anti-oxidants (i.e Ester-C). I have seen posts about using Milk Thistle for liver enzymes, and am considering starting it, but am waiting for my upcoming blood work first. I have also seen several recent posts about Zyflamend, and how the formula has recently changed possibly making it less effective.
I appreciate hearing from those of you taking supplements, and what you have found that may or may not be working for you. Have you been taking them based on your own research like me, and/or have your doctors recommended them?
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HopingForTheBest1
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I started out 14 years ago on the basis that I would not take an individual supplement unless the PCa literature showed potential benefit. Based on what I read, this ruled out multi-vatamin/mineral products.
Calcium was ruled out because it was associated with aggressive disease - probably because it suppresses hormonal vitamin D.
With D3, one needs to measure 25-D (calcidiol) levels & adjust the dose to meet your target. The Vitamin D Council says at least 50 ng/mL.
You mention turmeric, but the curcumin you are getting might be less than you think. However, curcumin products mostly have low bioavailability. I opted for LongVida:
The studies using saw palmetto are almost all BPH studies. The quality of saw palmetto found in products is quite variable. As with any supplement, avoid products that don't promise a standardized dose of the active component.
You have wise doctors. I trust you are taking most of those for reasons other than PC. Of the remaining supplements, calcium may be unsafe if your levels are not low:
That, and seeds, are the best source. They have to be uncooked, however. Any heat destroys myrosinase, an enzyme needed for absorption. In the French randomized clinical trial they used 60 mg/day (two 10 mg tablets three times per day).
I know from personal experience IP6 (aka "inositol hexaphosphate" "phytate". "phytic acid") presents no problems with Casodex, Eligard, or Lupron. Many patients undergoing chemo treatments of various types provide anecdotal evidence of compatibility with different chemos. Dr. AKM Shamsuddin of the U of MD Medical School has been a leading IP6 investigator with his colleague Ivana Vucenik, Ph.D., a hematologist. I recommend his 2011 text available at Amazon. In it he discusses taking IP6 during chemo treatments.
I just received an email from one of the men on this site who used IP6, European milk thistle, and a few others I have recommended here on this site. This was his seond attempt with IP6. He said he did not get satisfactory performance the first time. He upped the dosage level to one I had recommended. Result? Instead of doubling his PSA every few weeks, his PSA declined. The dosage is massive however: 12 scoops daily in two divided doses, mixed in water and taken on a completely empty stomach. Take 1500 mg of milk thistle at each meal. IP6 as Dr. Shamsuddin points out repeatedly in his studies is dose-dependent and time-dependent. I use Enzymatic Therapy Cell Forte IP6 & Inositol from Allstarhealth, as they off the best prices.
BTW, there is hard evidence in the journals, starting with Dr. Challa, et al., back in the nineties demonstrating synergistic performance of IP6 and green tea vs cancer cells. Kawatada, et al., in 2011 replicated Challa's findings with green tea and IP6. Note many international cancer researchers call "IP6" "phytic acid", its old name. There are also many other natural supplements with supportive findings in the cancer journals. You have to dig a little and understand the lexicon of these supplements' names.
If you go to nutritionfacts.org, you will find a few videos from Dr. Michael Greger on "phytates". This is another term for IP6 he favors. He draws heavily on published clinical research supporting the use of phytates to fight cancer.
May be a factor in my osteoporosis test I had about a year ago. My PCP noted the results from the radiological exam and said I would never have any problems with my bones given what he saw .
Two points need to be made: I take massive doses of IP6. I have my calcium measured by my PCP and I fall in the normal range. You may find Dr. Shamsuddin's book on IP6 helpful and particularly his discussions of IP6's calcium.
You may want to consider a consultation with a Naturopathic Doctor that understands PCa treatment. Maybe your Oncologist can recommend you to one. The one I see helped me develop a base line for diet and supplement suggestions including dosages and brand quality.
I have just this morning received this message from a person on another website for PCa patients. Apparently I had told him about Dr, Shamsuddin, IP6, and Dr. Vaclav Vetvicka and the natural immunomodulator beta glucan, which is explained by Dr. Vetvicka in his book "Beta Glucan: Nature's Secret", 3rd edition.
"Good Morning CalBear74,
I hope you are feeling well and doing great! Just a quick update. Further great news last week I had my second Lupron shot and a DRE. The doc informed me that "the two nodules on my prostate were gone and the surface was smooth." PSA down to 0.40 from 55 PSA three months ago! IP6 & the Beta Glucan worked well and it should keep me alive in the coming years for sure. Thanks"
If you want to know more about beta glucan just message me. Dr. Vetvicka urges all patients to take resveratrol and vitamin C with it. I use Transfer Point's Beta 1,3-D Glucan #300. It has been found in several studies to be the most potent, outperforming glucans derived from mushrooms and seaweed.
Interesting info about beta glucan , which I have not previously heard of. Would you happen to know if Transfer Point's product (at $69.95 per bottle) is better than Glucan Elite's product ($49.95)? Glucan Elite's website (glucanelite.com) claims (???) their product is more potent, and cheaper if you buy 3 bottles ($124.95).
So, you're taking both beta glucan and IP6 and you're getting positive results from both. I assume your MO is aware of what you're taking, and there are no apparent negative interactions with your ongoing hormone therapies?
Have you also looked at BIRM, as I am finding several positive posts on this forum about it? Another product I have not heard of before.
You will want to read chapter 23 in the 3rd edition of Dr. Vetvicka's "Beta Glucan: Nature's Secret". Transfer Point's Beta 1,3-D Glucan, #300, is the best performing glucan on the market and under test by Vetvicka, et al. Yeast-based glucans also outperformed barley, mushroom, and seaweed glucans. Go to vitawithimmunity.com for interviews of Dr. Vetvicka. Dr. Vetvicka does not endorse any products, but I did find out that he uses Transfer Point in his own research.
Painful lesson learned about juicing with spinach...
Thinking that spinach would be good for me, I used to juice with it every day and add the juice to smoothies.
After two kidney stones...one which required surgery...I stopped that practice.
I still eat it, but not every day and no longer juice with it. Don't take my word for it...check it out (research) if you (anyone) like to juice with spinach.
Take Care,
Monty
My partner was told not to take calcium supplements. Asked if there was anything else we could take to help and was told unfortunately not.
You received inaccurate information as I understand your partner's predicament. Not taking calcium supplements may be a good suggestion; however, if your partner's stones are composed of calcium oxalate, IP6 was identified long ago in a Harvard University study of kidney stones, and more recently in studies of kidney stones here and in South Africa as effective in slowly eliminating and preventing kidney stone formation. Dr. Shamsuddin discusses this at some length in his book on IP6/inositol hexaphosphate. As I recall, it is in a later chapter on "bones and stones". You would want to take a scoop of the powder in the morning mixed vigorously in water and consumed with an empty stomach. No food for a 1/2 hour at least. Again in the PM with an empty stomach. Of course, if he is fighting prostate cancer, the doses must be much heavier to "move the needle".
My confusion. I have recently encountered this problem with stones elsewhere. I just leapt to that conclusion. Your partner may find it useful to study the structure of the IP6 molecule which contains atoms of calcium and magnesium, thus it’s longer name Cal-Mag IP6. Shamsuddin’s text is helpful.
Interesting that he was told not to take calcium. My doctors told me that based on the hormone therapy I am on (Elligard + Zytiga/Prednisone) I need to take it. I am using Theralogix Prosteon calcium citrate 1,000 mg per day in 2 divided doses, which was recommended by my Urologist.
If you take calcium or D3, look into also taking K2 (puritan pride) natural doc recommened. My pharmacist never heard of it. She called me back said take it as studies show it directs calcium to bones not. arteries. I am not a doctor. Research it.
I started ADT in January (did 4 Firmagon's then switched to a 3-month Elligard) and started the Z&P in February when I got it approved. I went from a PSA of 86 to 1.05 in May when I started IGRT. I just finished my 9-weeks of IGRT. I was told that a PSA test would come in extra high right now because of the radiation but it would be more accurate or realistic in 3 months. My MO did one anyway a week before my IGRT ended. It was 1.06... I hope they were right about it being extra high now because of the radiation because that means it will be a lot lower soon!
I've been doing the calcium and D3 since January. My calcium numbers have stayed steady in the middle of the range my MO uses. I was told that was good and it meant my body was using what I was taking and not from my bones. Right or wrong, it seems believable to me.
I have a "keep the ball moving forward" attitude and I try not to look back or second guess my decisions. After discovering my first CT was interpreted incorrectly and I almost had surgery that would not have been recommended otherwise, I made sure I continued to take my time with decisions. I read everything I could find on doing ADT before, during and after RT plus I talked to my doctors.
I made a decision that if 2-months of ADT before RT actually shrunk and weakened the cancer cells for better results, 4-months could be even better. My PSA continued to drop during that time period. With getting the fiducial implants in my prostate and the IGRT simulation done, the IGRT moved out to May (almost 5-months of ADT at that point). I have zero information that 4-months is better than the "standard" 2-months. That was something I decided on....no looking back or second guessing... if I had to do it again, I would do it the same though.
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