His choices harmed him? It appears he had a good eight years without being ingested by the “health care” industry. He is 75. Statistically close to the median age of death. Imo his choices worked out fine. Lighten up Tall Allen.
According to Canadian actuarial tables, the average 75 yo man will survive for 12 years - more if he has above average health at 75. The OP had highly curable PCa when first diagnosed. There is no reason,if he watched his CV health with exercise and healthy eating, he could not have enjoyed life fully for 15 or 20 more years.
Now, he has incurable metastatic PCa because he chose not to get curative treatment. He will have to use hormone therapy and chemo to prevent pain and crippling. I hope they will continue to be effective for a long time, but they always entail life-altering side effects and, in the end, will stop working. At that point, only opiates will deal with the pain. He will have multiple organ failure and will die.
Jac-J, by what demented calculus is that not self-harm?
But I dont see many 85 year old men running, swimming or doing anything particularly enjoyable. Generally they are just surviving. Maybe Im hanging out with the wrong crowd?
I have the pleasure of working with some people at a Senior Center who are 90+ years of age who are sharp, and enjoy life. Relegating older people to a life of pain and suffering is completely unnecessary.
I too live in Canada and am three years older than you. Like you, I have been battling this beast for a very long time. In my case it has been ten and a half years. When diagnosed the PCa had metastasized to my bones (neck to my knees). To prevent any skeletal related events (SREs) I take a Prolia (denosumab) injection every six months. Prolia is the same drug as Xgeva but in a somewhat lower dose. I also take Vitamin D and Calcium with Magnesium. In my humble opinion, and without knowing your medical history, I would suggest you are taking too many vitamin supplements. Check with your family doctor. Some of them might not be necessary. Good luck!
Good advice on the overdose of the vitamins but I doubt the family doctor has a clue on this situation. At this time the function of that GP would be to refer him to a specialist that has experience in cancer treatments with suppliments, if there is such a practice.
We will never know if your choices harmed you....we do know that there are no randomized studies showing that your vitamin supplements could prevent your cancer from metastasizing . We do know that there was a fairly good probability that a SOC treatment would have prevented metastasis......but you may have also been unlucky and suffered some SOC side effects and still experienced metastasis. Anyway, congrats on apparently enjoying 8 years of good QOL without treatment SEs,, and hopefully you will have at least another 5 years or more before future treatments fail!!!!
The problem with supplements is you don’t know if they have done anything. There is a lot about prostate cancer scientists don’t know. There are different types. Some are rapid moving , some are slow. This man may have gotten the same results doing nothing. I took a mess of supplements but I followed allopathic regimens. Now, I’m 10 years out. Did taking supplements help .., maybe but who knows. I took a lot of aspirin in the beginning to alleviate inflammation. The amounts I took I don’t recommend. I was quite reckless with supplements as well. Finally I stopped all this and take zyflamend. I was up to 8 supplements a day, kinda crazy. For allopathic; it’s been lupron and Xtandi, that’s it. Would I recommend anyone to do this? It depends on your overall health, what other medicines you’re on, what other comobidities you have, do you smoke or drink alcohol? Supplements get expensive too after awhile.
Another thing you gotta read about the supplements you take. You have to see if the contradict the medicines you’re on. This takes time, if you’re not retired then you may hurt your liver or kidneys. If you’re still working it’s hard to do. Some supplements should only be taken for 2 weeks. It can be complicated for something that may not be helping. For example if you’re on a blood thinner don’t take aspirin. If your blood sugar runs high or low should you take just any damn thing? So that’s what you need to consider, adios.
No point in looking back as nobody can tell you definitively what would have happened should you have taken a different route. I’m happy that you had 8 years without treatment. That’s awesome!
My husband did do the conventional treatment along with supplements and complementary care approved through Case Comprehensive Medical Center Integrative Oncology (Cleveland Clinic), yet he still progressed. So nobody knows unfortunately.
To answer your question, I would seek an integrative oncologist at a reputable cancer center to discuss each supplement. The tide has been changing within oncology to embrace lifestyle, diet, specific supplements, and complementary therapies. Over the past 5-7 years, our 2 main institutions have hired several oncologists that specialize in this area, as well as conventional treatments, and we have found them to be quite helpful. Anything we can do to strengthen my husband while going through treatments is a plus!
And by the way, my husband is doing fantastic 6 years in with a Gleason 5+4. Stay strong and best of luck!
Thank you for your kind and encouraging reply to this gentleman. No one should be shamed or judged for past decisions, especially on this forum. The man asked for feedback about his supplements. That’s all. It is always the higher ground to be kind, considerate, encouraging, helpful, gentle. We are all just walking each other home. Peace.
JMO but run everything by your doctor. I went naturopathic 23 years ago. Two things I would probably change is turmeric to curcumin and calcium to magnesium. In 23 years I have never taken a calcium supplement because when we have too much calcium and not enough magnesium bad things can happen. It took Until 2021 for pain to show up. Psa was 5664. Don’t try to second guess yourself. Many people went by the book since I was diagnosed in 2000 and are no longer with us. One thing I do find strange is that when I was diagnosed in 2000 I was to limit calcium intake to 1000 mg a day. Now lots of guys supplement with it. When I start Xgeva MO says I’ll have to take it. We’ll see. That is what blood tests are for. For what it’s worth, my wife was borderline osteoporosis and doc recommended calcium. I gave her magnesium to try instead. Scan a year later showed improvement. No Prolia needed.
I’d get rid of the B12 for sure, my MO says prostate cancer loves it, that and vitamin E. Since the complex B50 might also contain B12, I’d get rid of it too.
I would guess that there are vegetables that contain B12, I’m just sharing what I was told by Dr. Sartor, he was crystal clear- “no B12 supplements, prostate cancer loves it”. I have no idea what a vegan diet requires.
Vitamin B12 is a water-soluble vitamin that is essential for many bodily functions, including red blood cell production, DNA synthesis, and nerve function. Vitamin B12 is only found in animal products, so people who follow a vegan or vegetarian diet may be at risk of deficiency.
Here are some good sources of vitamin B12:
Meat: beef, liver, lamb, pork, chicken
Fish: salmon, tuna, sardines, mackerel
Eggs
Dairy products: milk, yogurt, cheese
Fortified foods: some breakfast cereals, plant-based milks, and nutritional yeasts
The recommended daily intake of vitamin B12 for adults is 2.4 micrograms (mcg). Most people can get enough vitamin B12 from their diet, but people who follow a vegan or vegetarian diet, people with certain medical conditions, and older adults may need to take a vitamin B12 supplement.
My take is most would never need to supplement, unless vegan. I test mine as part of normal blood test every 4 month. All good and in range. I do eat a lot of salmon and tuna. and occasional burger.
I am by no terms an expert nor a doctor just a person who does research, in my travels I have read for PC patients most vit b forms bad, supplementing lycopene bad, lycopene natural sourced from eating cooked tomatoes Good, not jarred with sugar, I make homemade tomato soup have a cup every day with radish sprouts on top. learn to sprout radish and broc. Calcium I find mixed findings. Long term therapy warrants calcium supps ? But again some suggest calcium got us were we are now with PC. I myself shy away from coin flips . Look up Bovine Lactoferrin for PC, also detox liver with Tudca , both of these help to be taken with supps they act as a carrier to the liver for processing the supps- so the story goes. Had to edit in vit e bad, but a form called vit e succinate might I dare say good - anticancer , link provide, many articles that state this. i take this form myself 400mg daily
I take a lot of supplements also. Most of what you list is for general health, like taking CoQ10 especially if taking a statin. The others are good for you IMO and no need to stop.
I took B12 after my prostate cancer surgery and my PSA went up from 0.01 to 0.10. As soon as I stopped taking B12, my PSA went back down to 0.01. Since so many foods are "fortified" with vitamins nowadays, I read labels and avoid anything with added B12 and/or folate as well. Ever since they discovered that folate can prevent birth defects, food manufacturers have added that too to nearly all the "fortified" foods, but folate supplementation is another risk for prostate cancer progression.
A lot goes into what is good and bad and multivitamins as well as other vitamins and supplements have been studied for their impact. In general taking a multivitamin shows neither +/- impact. Other studies have looked at various things: Folate, B12, Selenium, and such. Overall, most find that vitamins D & calcium may be recommended while on ADT. Best is adjusting the diet: eliminating Whole Milk, increase intake of Lycopene through tomatoes (cooked best), variety of brightly colored vegetables & fruits, good protein sources (leaning to plant-based), good oils, whole grains. ---- There are other interesting factors that can have individual impact as I have found. My blood type is AB+. AB blood types are shown to have lower levels of gastric acids and this can impact absorption of some nutrients - B12 & iron and protein. The best method to check is blood tests that look at B12 levels, protein levels, iron, and other serum levels. From there diet adjustments and possibly supplements may be recommended.
This is the first I've heard of the B12 connection with PCa. I'm vegan and take a B12 supplement every day (1000 MCG). I'm always experiencing some fatigue from the lupron. Not sure now how to balance the risks vs. the benefits of the daily B12 supplement.
There is NO evidence that taking dietary supplements harms us when we have cancer. Doctors who don't really understand 'complementary/integrative oncology, tend to say NO. I say What is your evidence for saying no? I am 31 years out from original breast cancer diagnosis and have kept up protocols all these years. Lots of small studies (due to cost) that show benefits. See pubmed.gov
Hi there, that's not evidence about dietary supplements. Substances like those are considered COMPLEMENTARY. This article is about people who refused conventional treatments in order to do 'alternatives',. However I just gave a talk about the use of 'alternative' medicine at the World Congress on Integrative Oncology. So several things: 1) in 1993 when I was first diagnosed with breast cancer, nutrition and physical activity were 'alternative' medicine. The oncologist asked me if I was trying to KILL myself by doing Yoga? So things change. 2) people who successfully use 'alternatives' rarely report back to the conventional oncologists. 3) People who are told there is no more that conventional medicine can do, often turn to 'alternatives' and a subset of the SURVIVE long-term. Again they have no reason to report back to the original oncologist.
They had a 2.5-fold greater risk of death. For women with breast cancer, like yourself, the risk was 5.7 times worse.
So alternative is worse than complementary, but both harm patients.
I agree that use of both complementary and alternative medicine is under-reported. But with evidence this bad even among those who do report it, isn't that good enough reason to stop doing it?
People with cancer have weakening of all systems, so only exercise and healthy eating makes sense. No supplements have shown any benefit in randomized clinical trials (except sulforaphane) foe PCa and some have known harms. Why would you harm a man by telling him to overload his body with some exogenous chemical?
You don’t mention anything about your disease status at the time of dx….. if you were advanced at that time then possibly the supplements helped….we’ll never know. If you were low risk odds favored cure with allopathic medicine and you did yourself a disservice self treating with only supplements….
Admittedly I am not a big fan of supplements in cancer tx….feel that all you get is highly expensive urine so my “advice” would be to save yourself a good chunk of change and sideline the supplements. Posting your stats at the time of dx would be helpful for more informed responses.
There are few randomized clinical trials of dietary supplements since they cannot be patented and Big Pharma cares about $. So there are many, many smaller studies that agree, people benefit from dietary supplements.
True statement there. It is amazing some of the natural ways we can help our selves but it just seems that when some med students come up with it and is reviewed by a Dr. and he says evidence is compelling and should go to clinical trials that’s as far as it goes. Curcurmin is one for sure. Another is probiotics. The study I just mentioned was done at JHU and proved that men with good gut flora respond to adt better than those who have poor flora. The Dr who reviewed it even suggested fecal transplants. It is interesting that abiraterone actually improves the good gut bacteria. Not many meds improve gut micrombe.
I don’t know whether you saved some years of better quality of life? I suppose the your bones are perhaps more compromised, at risk of fracture? I let mine go for 2.5 years I wonder if I fought it earlier if I could have had directed spotvradiation? When do they start the castration process with recurrences?
Anyone taking fenbendazole?
What about beta sitosterol?
I am adding these to my regime.
Abiraterone, ADT, ivermectin, keto diet, high dose melatonin
I think the key here is in one of the studies posted by Tall_Allen: "Among patients who were receiving at least 1 form of CCT, those who chose CM were more likely to refuse additional CCT. Patients who chose CM also had a higher risk of death than patients who did not use CM when measures of treatment adherence were not included. However, when measures of treatment adherence were included, CM was no longer associated with an increased risk of death. The greater risk of death associated with CM is therefore linked to its association with treatment refusal."
So, as long as you are not exaggerating with the dosage and you are not using only supplements and no SOC for your cancer, if they do not help, they should not harm at least.
Plus there are various ways of helping that are being investigated by many serious institutions/trials. For example something could not act directly on the tumor but help a lot with microbiome, which would help your body to stay strong and endure therapies...it's a rather complex subject honestly, that's why I have always (also as ex athlete and personal trainer) kept away from things that had something like "300% of RDA" written on their label. An exception are bariatric patients which can easily go up to 10,000% but that's another story.
Hi - I was told to take 1000 Calcium and 2000 D3 to avoid the osteoporosis impact of HT drugs. More recently there was some recognition that the extra calcium, in addition to sublimating D3 which needs to be replaced, can seem to diminish magnesium so it is wise to maybe test for that in your annual or semiannual tests. I took B complex w significant B12 until I read that we really only have to have B3 and often that's available in a normal diet. In general it seems taking supplements can be a double edged sword; E for example actually correlates with increased cancer, and there are articles against C as well; so now I am more cautious. There is some recognition that Tumeric is an anti cancer agent and I do take that. Lycopene is available in tomatoes and I eat those. I also take Gingko Biloboa for mental, but I am beginning to worry about that! Just sharing.
Maybe go see a licensed nutritionist that specializes in cancer. They have one at U Chicago that any cancer patient can see. Block Cancer Center in Chicago also has one. It is not that any of these will cure advanced disease, but they can make your body generally function better and have a better chance in the end results.
Many years ago a neighbor was diagnosed with terminal breast cancer with a prognosis of 12 to 18 months with chemo and 6 months without. She opted for no chemo. A nurse approached her and asked her if she would be willing to try Laetrile. Her option was pills here which were illegal or infusions in Mexico. Her and her husband flew to Mexico and learned how to eat healthy as well as receiving treatment. She was 51 at the time and died at 80. A friend of my daughter has triple neg breast cancer. She went through all the chemo and almost refused the last one but did it to see her son graduate. Accepting the fact she had only months to live she was ready to die but someone told her of a local natrapathic practioner. She charger 399 for the first session and 99 after that and recommends 6 sessions. They took stool and hair samples and set up a regiment for her working with her doctor. They can’t find any cancer after several tests and my daughter said she has never seen her look better. If you want to read something, Google sauerkraut and breast cancer.
If Tall Allen reads this then he will start hating you. Everything here discussdiscussed needs to go thru clinical trials except maybe Covid vaccine which was administrated to billions without trials but all "Science" based gurus refused to accept the side effects until AstraZeneca themselves came out and accepted the vaccine injury
Pretty sure TA and I can disagree without hating each other. As far as the sauerkraut and breast cancer, it was found that when polish women migrated to Chicago and stopped eating raw fermented sauerkraut their breast cancer rate increased by 30%. Also, some students at JHUniversity did a study on gut health and found that patients on ADT with balanced gut micrombe did much better than those that had poorer gut health. The Dr. that reviewed the study said more studies need to be made and that fecal transplants may have to be considered. God bless and stay the course.
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