Hi, I am a wife to a loving husband who was diagnosed just last June 2018 (a few days after his 44th bday) with Stage 4B prostate cancer, Gleason 9, multiple mets to the ribs, spine, pelvic, numerous lymph nodes. Then in July he started on Casodex (2wks), then Eligard (every 3months), Zytiga and Xgeva (both monthly). His initial PSA in June/July was 33 and after only a month of treatment it went down to 3 and hopefully it continously goes down to a very low undetectable level.
After hearing the news, I was so shocked and devastated because he is so young and we are active in sports (triathlon) and no prostate cancer in his family so not really sure how he got Pca. We also have 3 small kids which makes it even harder 😢 However, despite my sadness and fears, I am just thankful that my husband is a very positive person and optimistic that we are going to win this battle! He continues to work (so that we can pay for his treatments) and thankfully he is not having bad side effects except for once in a blue moon hot flushes and headache.
So, in order to support him the best way I can, I changed his diet to a pescatarian diet, fuit/veggie juicing, and as much as possible no red meat, no chicken, no pork, no egg/butter/dairy, no refined sugar. Is this something you have embraced as well? Also, he super loves eating bread so I make him eat multi grain or sour dough bread with no sugar (these are the only safe breads i can find in our area). Is it ok for him to eat these breads?
Lastly and most importantly, what sort of supplements are you taking that have helped you in your journey?
Appreciate all your help in advance! Thank you!
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dvcarola
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Did your husband had a Hormon-Tx oder other operations in regard of the PCa? Have you done a PSMA-PET scan? Most sensitive imaging modality and also big potential for treatment (see Lu-PSMA). Regards F
He did 2wks casodex initial treatment and then zytiga, eligard and xgeva all ongoing... yes he did PET-PSMA scan which showed a lot of mets in the ribs (3rd/5th/6th), spine, pelvis, numerous lymph nodes and it also lit up on his neck and salivary glands but doctor said those are not included which im still wondering if i should believe or not 😢
Look at post by nalkarats. Hopefully I spelled that right. As for the bread . I believe spelt bread is good. Looks like you are on the right track. Sugar there's a debate over but there's zero doubt that sugar causes inflammation. He needs to take vitamin d, but not sure of dose. Also look into mushroom extract call psk or if my dad still won't take maybe I can send. It's expensive, tumeric (must have pepper in it to work and cheaper if you buy the powder than the pills) or zyflamed, both good , absolutely probiotics if you have extra money ultra defense by garden of life is good. If not I like pb8. Milk thistle will help protect liver, dandelion and marshmallow can help protect kidneys.fish oil for heart and joints (debatable but some will say use krill oil not just fish oil). If not doing chemo multivitamin. The meds and lowering testosterone causes exaustion as well,so b vitamins, and green tea. The fact that he's active,juicing, and healthy except for the pca plus young age are also all in your favor, that's said not to dismiss your emotions, but because it's been shown to help treatment go more smoothly. I truly truly believe that within ten years they are going to have a cure or be close to one. Don't give up because the field is growing so rapidly. Look on the Sloan Kettering site as well. I believe they have a natural supplement division to integrate with therapy. Hope this helps a little oh also people say promegranate juice or supplements. Supplenebts don't work in a day but I order from vitacost online because if end up not being able to take something or not a good fit for body even if used they will do a full return. I'm not sure what other companies do. Also one top brand is garden of life. I also think country life has some high quality and digestive enzymes from source naturals help me, but I'm not a cancer patient, just have various health issues. So much serotonin is produced in the gut and even if no disease appears in the digestive track what you are doing with the food is absolutely amazing and I'm sending light and love to you and your husband. I know how important a positive mind is as I watched the difference in my dad who believes he can manage this and die with it not from it and the attitude of my mom who was very negative and died in four months of dx from an aggressive form of lung cancer. I lost my two weeks ago . My father has far more Mets throughout his body but he goes to work which keeps him feeling accomplished. What I did learn is at first I thought they wanted to talk about how they felt, but with so many apts sometimes all a person wants is distraction. My dad hides info to protect me and rarely talks about his illness. He said it doesn't define him, that it shows him down, but he's still the same man and he's never giving up. I'm here if you need to talk to an outsider of the family. Please let us know how the diet and all go. You have years ahead of you...don't read Google stats...they are all outdated. Talk to men on here and you'll find peace and hope and amazing research xoxo
Thank you so much for all your inputs! Some items youve mentioned are included in our daily protocol like multivit, calcium, vit D, turmeric, probiotics, omega 3 oil (not sure if i will continue), i also make him daily juice 2glasses out of beetroot, apple, celery, cucumber and carrot and then 2-3 glasses from boiled soursop leaves, turmeric, ginger, moringa leaves and green tea leaves... we also transitioned to alkaline water hoping it really does help(?)... some of the items youve mentioned i will have a look and see if i can include in our protocol and if easy to source it out from here in the Phils... sorry to hear abt your mom and dad but its nice to hear that positive attitude helped your dad which i think is very impt for anybody undergoing through Pca... thank you for your words of encouragement!
Wow, what you are doing for him is so honorable and so beautiful doing it together. Look up Angel Howerton on FB. I'm not sure if she's still running a group rt. Now but she's an herbalist and works with cancer patients to guide them in nAtural treatments that can help. Amazing friend and human being. You may want to follow her as she is always putting out info on natural healing for cancer patients. You are doing amazing.
PS look up essiac tea. I haven't tried it yet but it's another supplent that people debate . Honestly juicing is one of the most important. Ty for reminding me just how important because o stopped juicing , got lazy, and it makes a huge difference. Of you drink it too you can feel your body saying thank you. Look up gerson diet as well on relation to juicing. Xoxo update us when you can please
Thanks for the tip, i will look for her on fb, i really love integrating herbals in my husband’s protocol because i do believe they do help my husband becoming stronger
You will find a range of views on the subject of nutrition & supplements in this group. At one end we have the "nothing helps" belief - only drugs & radiation.
My own view almost 15 years ago was that modern medicine gave me very poor survival odds, so I started to research all of the PCa studies on PubMed. I posted on a wide range of supplements 2 years ago.
"a pescatarian diet" (which usually means no meat at all) may well be the best. Don't forget canned fish. King Oscar sardines delivers 2,500mg marine omega-3 per 3.75 oz can. Royal Red sockeye salmon has 1,180 mg per third of a cup. I avoid farmed fish. Fresh wild salmon is very profitable, & much of it is fake farmed salmon.
You mention avoiding sugar & many obsess over that when the issue is really serum glucose. Unfortunately, "fuit/veggie juicing" is a great way to spike glucose. Many years ago I used to go through a ton of carrot juice. It ain't healthy.
Glucose is not a driver of PCa, but excess glucose leads to insulin resistance & that is a problem for men with PCa IMO.
You mention cutting out butter (which I don't) & I wonder if you are cutting down fats in general. The healthiest diet for the heart is a Mediterranean-style diet. Men with PCa have a higher risk for cardiovascular disease. The Med diet is 40% fat.
If you were to adopt a Dean Ornish 10% fat diet, i.e. very high in carbs, that would lead to elevated insulin & (invisible) visceral fat. 40% fat isn't fashionable, but the high-carb food pyramid is associated with widespread obesity. Sure, association doesn't prove cause, but you should listen to Dr. Myers on the subject (Google "askdrmyers").
Most bought bread is no "healthier" than white bread. It all turns to sugar in the mouth. The good thing about butter, in this context, is that it lengthens digestion time, so that severe glucose spikes might be avoided.
You could get him to switch to a good olive oil. Frankly, if he loves bread, I wouldn't worry about it - provided it is eaten with fat.
Search this site for posts beginning with "Foods/Supplements-Vitamins:".
Wow so many great inputs! Im scared of salmon because like u said many are farmed and not good! Not sure where can i find a real wild salmon in this part of the world but i will try. I cut down on dairy because I read somewhere that its bad fro Pca so you’re giving me a new insight! And yes will look into mediterranean diet and will start learning how to prepare that (might be a struggle but will try)... Also, im making him drink 2tbsp EVCO everyday mixed in his juice, is that good? And yes he has a good olive oil I use for preparing his meals... thank you for all the advise!
Unfortunately i tried to search in amazon for the wild caught salmon and other recommendations from some kind gents here but they dont ship to the Philippines 😔😔😔
In 2016 I was diagnosed Gleason 9, PSA 286, Stage IV extensive pelvic and abdominal node mets. I now have an undetectable PSA and clean scans and there is no doubt the practice of aggressive multimodal therapy got me to this point. However I can't help but think changing my diet aided in getting me there too. At 46 I was active, good shape and could and did eat everything I wanted. When diagnosed I changed that to a much healthier diet. Kale, broccoli, romaine lettuce, chicken and fish are a regular part of my eating today. I have a can of sardines or herring almost daily with a salad for lunch at work. I do eat the occasional desert and it hasn't seemed to hinder anything. I haven't had a piece of red meat since diagnosed. I do think I will get there again but at this point I'm not ready yet. I also quit drinking milk but still eat cheese occasionally. The thought of a glass of milk actually gags me now and precancer days I lived on the stuff.
Nobody knows for certain about diet and it usually gets several points of views when discussed. Prostate cancer is hormone driven and no matter what cells will use good food as well as bad. My bonus to eating healthy is it kept me strong through some pretty tough treatments. I'm not quite as strict as I was when initially diagnosed but still maintain healthy eating. Whether fighting a disease or just trying to maintain a healthy weight a person is only going to benefit.
Yes, i totally agree that keeping a healthy diet does help in achieving a stronger body needed to undergo tough treatments. Btw, may i know what treatments you had and how long did it take you before you reach the undetectable PSA? I know it works differently for diff people but just the same that would be good to know. Thank you!
February 2016 diagnosed with numbers above and placed on HT consisting of Lupron and Casodex. June 2016 six rounds of docetaxel while remaining on Lupron and brought PSA down to 1.8. August 2016 added Casodex back to the mix and brought PSA down to .51. Hometown medical oncologist and Urologist wouldn't budge on surgery. I found a doctor that would and December 2016 open prostatectomy with an extended lymphadenectomy at Mayo Clinic and post surgery PSA has been <0.01 since.
My opinion is fast and aggressive multimodal treatment early while cancer is weak will give a guy the best chance at getting ahead of this. Finding a major league hospital that can get away with treating outside of the standard of care format and a doctor willing to do the same made all the difference for me.
Our med onco also mentioned that surgery is useless because cancer has spread through my husband’s body and financially speaking it might be too much for us because as it is now we are on our own. We dont have any medical insurance and we are paying everything out of our own pocket 😢
Tall Allen has some sage advice below on mets that are distant. This disease runs differently in every man and it is truly overwhelming where to turn. If he hasn't had chemo yet it may be possible to get him in a trial. Allen seems to have access on up to date trial options and where they are located and I don't think insurance is needed but not certain. Others here I'm sure may give some insight on trial qualifications. Your husband is lucky to have your strength fighting this dreaded disease and you are fighting it too. Many don't realize just how hard this is on the ones closest to us.
Hallo dvcaralola. My case was/is very much the same as dayatatime. Except my PSA was 931 when diagnosed. And not normal PC but aggressive tubular prostate cancer. But I want to echo his advise. Keep to green diet. I do cheat and chicken as well. But most of the time for lunch I cook a purple sweet potato (skin and all), size as big as my fist, mash it, with two tomato/chilli sardines, plus more tomato puree, plus half a teaspoon of turmeric, little bit of black pepper, few drops if olive oil. I am now on a drug free holiday. PSA 0.08. I was on Lucrin. Suplements: a well proofed one is cayenne pepper capsules -3000 mg a day. After meals, with tomato juice. You can read up, Google: capsaicin lycopene combination, and read the the research that was done at the university of Toronto in Canada. And there are many many many good second line treatments. I clear up my black spot on the pelvis with artemether. The malaria tablet Coartem is a combination of Artemether and Lumefantrine. It will not interfere with his Lupron. Kind Regards thinuslandie@hotmail.com
Find your love and happiness in your husband and God and your children.
We definitely altered my husbands diet - (45 when diagnosed) but the main thing we are trying to control is inflammation and insulin resistance. Although we are definitely going much less extreme - he eats less carbs and combines them with proteins (chicken and beans <we tried to overcome our hatred of fish and just can't) Anyway - combining carbs with proteins/fats can help lower their impact on the glycemic index. For that same reason I would be cautious with juicing - impact on blood sugar but also fiber is super important and juicing tends to strip all the good stuff of its fiber (unless you are doing that whole fruit/veggie blend thing) but I would still watch the sugar.
We are only 9 months into it - so I am almost as newbie as you - the thing is this is just a thing we can do to help our husbands have the best chance - I have to really rein in my thinking here because at the end of the day nutrition is complimentary to his treatments - but can't substitute for them and I know that no matter how perfect his diet is the cancer could still move forward - so I am trying to keep it all in perspective. Hubby gained about thirty pounds on the initial hormone treatment and throughout chemo - he has his last (12th) session in three weeks - and we started a new exercise program (strength based) - with chemo being done I am pretty sure he will focus on diet and exercise so that it feels like we are still actively doing SOMETHING to fight this.
I alternate blending and juicing fruits and veggies so i think my husband still get some fiber aside from his daily salad at lunch time. I also make him drink from time to time the organifi red and green juices, it is quite expensive so not too often. However, he is losing a little bit of weight (lost 5pounds in 2months) because of his lowfat lowsugar diet and we can see that his muscles are shrinking (effect of hormonal therapy?) and this is making him sad 😔 and due to a lot of work in his ofc now, he is not able to exercise that much as he used to, but he does daily walking (which bores him), some swim, a little weight lifting and stretch bands.
May i ask how long was the 30 pounds gain weight from the time your husband started the hormonal treatment? Also, what are his current treatment protocol now? Appreciate your help!
I had to really think on this ... but the weight gain was over 6 months or so. It did stabilize though. I think it was the combination of the hormone therapy and the prednisone he has been on. Hubby’s psa was 6800 at diagnosis...he is doing Lupron and taxotere but we ended up going the full 12 doses on taxotere (next one is the last) because psa kept dropping. At .4 now although they initially thought he would stabilize around 100. We never did have a Gleason score because initial symptoms were consistent with lymphoma so his biopsy was of the lymph node and they were shocked when it came up prostate. mestasized throughout his lymph system. At any rate since the puzzle pieces all joined up so nicely without a Gleason score prostate biopsy was unnecessary.
Remember to treat him as a human being and not just a patient. That means - let him enjoy life, including the foods he likes. I very much understand your panic and the need to DO something - anything - to contribute to his wellbeing. He needs you for emotional support - he has doctors who will treat him as a patient. He's a LOT more than just a person with prostate cancer.
There is no high level evidence that dietary changes at this point will change his prognosis. In fact, the recent MEAL study showed that 2 years of increasing vegetable intake had no effect on progression among men on active surveillance. If he does triathlons, I expect his cardiovascular health is already excellent, and doesn't require dietary changes. There is no reason to suppose that cutting out sugar accomplishes anything (in fact, prostate cancer does not metabolize sugars appreciably and Insulinelike Growth Factor inhibitors have had no effect) - let the poor guy enjoy his food.
The only supplement I've seen that has some proof behind it is sulforaphane.
Thank you for reminding me to go easy on my husband and to not treat him as a patient as I am too strict with him at times, brought tears to my eyes now as I am guilty of it 😢 I am just scared at times knowing how little we know about prostate cancer and how it progresses in the body and then i read so many confusing stuff on the internet which makes it all the more difficult to choose which one to believe!
Btw, may I ask if the metastases in the bones/spine gets cured with either Zytiga or Eligard? I read that Xgeva does not cure it but only strengthen the bones. Or will the cancer stay forever in the body? Meaning meds are just there to contain it? When I ask our doctor how long we need to take the medications he cant give a straight answer and it worries me having read some of the posts here that Pca meds are taken for many many years 😔
Ive read some of your great inputs in this forum being a very knowlegeable person here so i thank you for taking the time to answer my post!
Once distant metastases have been discovered, PC is incurable with today's therapies, but with today's (and tomorrow's) medicines, it can be managed as a disease one can live with for a long time potentially (think of HIV, for example). You may be interested in this recent discussion:
You are right that the internet is both a source of information and misinformation. In general, you can trust research published in professional peer-reviewed journals, but even there, you have to understand its level of evidence and where it fits in context. When you have questions, ask his oncologist. Doctors these days expect patients to bring stuff from the internet. But you will wear out your welcome if you bring him non-journal citations or mouse/lab studies.
Zytiga and Eligard are hormonal therapies that have a proven track record in increasing survival (even if they aren't cures). He is having an excellent response to them. Eventually, the cancer will evolve to become resistant to their effects. Then there are other medicines in the armamentarium, and more will undoubtedly be approved by the time he needs them. Since he is taking Xgeva, ask his oncologist if he can add Celebrex - the combination of Celebrex and Zometa (a similar medicine) increased survival by 22%:
In another post, you mentioned "daily protocol like multivit, calcium, vit D, turmeric, probiotics, omega 3 oil (not sure if i will continue)" I hope not.
•Multivitamins often contain high doses of Vitamins E, C, selenium and other antioxidants that may interfere with the way his body naturally fights cancer.
•Calcium has been implicated in promoting cancer in some observational studies like these:
Is it ok if all the supplements that my husband is taking is way below RDA because i agree that too much is not good! Like his multivit should be 3caps but i only make him take 1cap because of the exaggerated dose! But thanks for the links, i will read up on those!
It sounds like he gets all the micronutrients he can use from the foods he eats - our body's evolved to do that. There are co-factors and enzymes in foods that are not included in pills that increase bioavailability.There really is no reason for most people to take vitamins.
As usual, thanks for your worthwhile and informative posts Tall_Allen. You mention a couple of things in your posts that I hope you can elaborate on.
1) Sulforaphane: I know you can get it from vegetables like broccoli, radishes etc but if you don't eat these every day, would it be a good idea to take supplements as well? If so at what dose?
2) Celebrex and Zometa vs Celebrex and Xgeva: I've seen the studies on Celebrex and Zometa and the benefit on increased survival. I haven't been able to find any studies with Xgeva in place of Zometa. Do you think it would work as well? I ask, because administration of it is 'easier' in that it doesn't require an infusion (injection instead). Also if one's calcium levels are normal, is there a danger in taking either Zometa or Xgeva to 'increase survival'? Would an MO even prescribe it? Thanks.
The one randomized clinical trial was done with 60 mg sulforaphane cold-extracted from broccoli sprouts. I think that's a lot of broccoli sprouts (which are time-consuming to grow). Here's the RCT:
I'm guessing that Celebrex would work just as well with Xgeva as Zometa, although Xgeva inhibits COX-2 in a different way. Maybe not. But Celebrex is relatively safe -- it was the one COX-2 inhibitor that did not harm the heart. Unlike other NSAIDS it does not harm the digestive tract (it was designed for people with arthritis who take it everyday over long periods of time).
Serum calcium is different from bone mineral density (BMD). If a DEXA scan shows normal BMD, there's no need to take Xgeva or Zometa. But long-term ADT usually depletes BMD.
Thanks Allen for your helpful reply. With regards to your comment about serum calcium being different from BMD, isn't one related to the other? My understanding of the action of osteolytic cells in resorption of bone, is that it causes a decease in bone density and therefore an increase in serum Ca. Is this true or just oversimplified?
In any case, my BMD is normal to above normal, so as you say no need for Zometa or Xgeva yet. But now I'm wondering, about my recent BMD results which show a very high density in the spine (where I have mets). I assumed this was a good thing for prevention of fractures, but does it actually indicate osteoblastic activity (i.e. progression of mets) or possibly scar tissue from healing of mets, or just strong bones? : ) I will ask the MO next week when I see him but if you have any thoughts I'd appreciate hearing them.
You may be right that loss of bone causes serum calcium to temporarily increase. The amount of serum calcium is controlled by Vitamin D. In fact, excess serum Vitamin D can actually pull calcium out of bones to increase the serum levels of calcium (another reason not to supplement).
It seems likely that the high BMD in certain parts of your spine may be related to the mets there, but you'd have to check the CT to be sure. BMD naturally varies with different bones.
What is all the hype about this nutritional therapy? I can’t imagine a legitimate g u oncologist pushing this stuff? The detail about these nutrients is outrageous in my view of things.
Agree with Tall Allen.. Please refer to Tuesday’s posts about the ineffectiveness of vitamin D. Be sure you have a brilliant oncologist and get his opinion..good luck. All this sugar..insulin resistance really does not apply in this situation.
Thank you, i give my husband daily 650mg calcium and 5000 IU vit d3, which i think is not over the limit? Is that ok? Our med onco said he needs just the right amount of calcium and vit d3 to strengthen his bones due to his mutiple bone mets but not too much.
I take a daily 600mg calcium supplement for bone strength. I drink a glass of kefir every morning and last thing at night for all round health benefit and also because kefir apparently enhances absorption of calcium. Apart from that, I try as much as possible to eat a high fruit, high vegetable, high fiber diet. I drink a large glass of pomegranate juice daily (no sugar, no sweeteners) and rooibos tea a couple of times a day - both for their very high antioxidant content.
Unfortunately stuff like kefir and pomegranate juice is very hard to find here in the Phils but i read so many good things about pomegranate juice! Pls send update if you have very good results on those! Ty
My husband was in the pomegranate juice study at U of Mn and his PSA rose during the study which lasted for a few tears. He enjoyed the free juice but it didn’t help him.
Bone mets from prostate cancer is most often "blastic" - which means the cancer causes the bone to create too MUCH bone material. The affected bones get brittle and are subject to fracture. The rest of the bones (the healthy ones) are subject to bone LOSS due to ADT. If they lose too much material (osteopenia) they can break easily. His oncologist will periodically check his bone mineral density (BMD) with a DEXA scan. There is no evidence that supplementing Vitamin D and calcium affects BMD, and they certainly do not help his cancer in any way. Zometa or Xgeva are given to prevent osteopenia (loss of bone material) and prevent fractures.
Thanks Allen & others for your post on the subject of bone mets from prostate cancer. I believe you all mean well in sharing. I'm one with Gleason-8 (4+4) Stage-4 PCa with 5 bone mets, thus I can provide another first hand point of view and hope.
There are many post I've read of folks getting or their doctor has suggested starting XGeva monthly shots. I was one of those that my urologist of 20-years suggested it to me and then referred me to a medical oncologist. I refused to get XGeva shots because of all of the negatives I discovered. Do a Google search on XGeva lawsuitss: schmidtlaw.com/xgeva-prolia...
Instead I'm taking AlgaeCal and doing just fine so far. AlgaeCal rebuilds bone. My last bone density scan was great for my age group and unlikely to have a bone fractures even with my PCa bone mets which are stable and don't hurt. There is another product called Raw Calcium which might do the same thing, rebuild lost bone.
There have been many of them and expensive settlements. Interesting that Google removed those public listed cases. Here is one: 4bonehealth.org/osteonecros...
When I asked my dentist about XGeva, I was told, "Don't start with that, it's dangerous!" I have a other web site postings that I downloaded in the past explained how all Denosumabs are bad news especially on your immune system. Further damage or hinder your immune system with these drugs does not increase your odds of reversing/controlling PCa.
When I was diagnosed with PCa, my Vit. D levels was in the 20s. Respectfully, "evidence" or not, I was told by my doctors (one who was a 30-year cardiologist, now an alternative doctor) to get my Vit-D up in the 70s to 100 range because I have prostate cancer and need to ramp up my defenses. As of this writing it now 52.4 and that's taking 20,000 D3/K2 IUs everyday of the week. For me, I made a decision and appears my doctor was right.
XGeva does not rebuild bone and does tinker with your natural immune system's task to find and kill cancer cells. The following was written in 2012 not that long after the drug was FDA approved. It's six years later and the problems and lawsuits continue to pour in. Keep reading and you will learn what does rebuild bone naturally.
How Does Denosumab Works
"Denosumab (Prolia, Xgeva) does this by binding to and thus blocking off the RANK ligand (RANKL). RANKL is a protein whose job is to bind to a cell receptor called RANK that is found on several different cell types, just one of which is osteoclast precursor cells. RANK (an acronym that stands for receptor activator of nuclear factor-kappa B”) is activated by the RANK-Ligand (RANKL). RANK is produced by osteoblasts (yes, osteoblasts — these bone building cells work in concert with osteoclasts to continuously replace old or damaged bone with new bone). When RANKL activates the RANK receptor on the precursor cells for osteoclasts, this signals these osteoclast- wannabes to develop into mature osteoclasts ready to remove worn out bone. By preventing RANKL from doing its job, denosumab (Prolia, Xgeva) prevents osteoclasts from ever maturing and doing theirs."
What Problems Might Arise?
"Since denosumab, like the bisphosphonates, prevents normal bone remodeling, one would expect the denosumab twins, Prolia and Xgeva, to produce similar adverse effects, and they do. Far fewer studies tracking outcomes are available in comparison to the bisphosphonates because denosumab just got FDA approval as Prolia in June 2010, and as Xgeva in November 2010. But, already denosumab has been found to cause osteonecrosis of the jaw. Given the hundreds of studies which have now confirmed that, by preventing normal bone remodeling, the bisphosphonates cause not only ONJ, but “atypical” femur fractures, one wonders why the pharmaceutical companies are now attempting to sell us yet another drug that prevents osteoclast function."
"Denosumab’s most common side effects, noted to date, include infections of the urinary and respiratory tract, cataract, constipation, rashes and joint pain. A small study has also already found slightly increased risk of cancer and severe infections. Another trial showed significantly increased rates of eczema and skin infections so severe they required hospitalization. "
"Why might denosumab increase risk of severe infection or cancer? Well, guess what else must bind to RANKL in order to develop – T and B cells, key cells of our immune system! Obviously, the potential adverse ramifications of this fact of human physiology were somehow overlooked when FDA gave denosumab its stamp of approval."
With all said above, my response above provides a glimpse of what I'm doing about my PCa bone mets. And you can bet I will NEVER take Xgeva. Besides my 1-year plus food lifestyle changes, exercise, sleep, comes supplements. Hands down, for me the top of my list is IP6 powder supplement. Above I only indicated what is effectively working for me dealing with Stage-4 PCa bone mets. PCa cancer stem cells are already in my body. As for me (and as with most of you) are taking (Lupron/Casodex), but I consume 12 scoops of IP6 per day and the gent who turned me on to it takes 16-scoops per day.
In summary, this is how it works/worked for me. I needed to drop my PSA from 55 (PSA was doubling every two months) as fast as possible. Started with the Lupron/Casodex and IP6 intake. PSA drops down to 6.9 PSA in three weeks and 0.40 PSA in two months. Note! Got the Lupron flare up in about three days after starting shot most likely because of the IP6. Urologist indicated that would occur in a few weeks. He did not know I was taking IP6. In short, IP6 undoubtedly synergistically sped up the process of reducing PCa which I was hoping for. Last DRE a few weeks ago showed a "smooth as a table" comment/feedback about my now gone two large prostate nodules.
Now that I have the PCa in a weak state, I have continued to eradicate the PCa stem cells. IP6 is one of the major no-brainers making the difference. By the way, IP6 is natural and consist of Phytates for body rehabilitation.
Ohno my husband already started on Xgeva! He just finished 1month today and will have another shot tomorrow. Had i known these info you told me, i would have second thought 😢 But i am seriously considering IP6 and hopefully it isnt too expensive to include in our daily protocol. Thanks so much Herman for the inputs!
Hello again dvcarola! I read your reply to me about the IP6 and the above mention of not having medical insurance. Looks like the Lord is working and put us in each other's path. I have you in my prayers.
First, here is where I have been purchasing my IP6: tinyurl.com/yczz2k5x which runs about $39.98 per container. I take 9-scoops per day and a container usually last me about 7-days. I tend to buy them in bulk of four when they offer bonuses @ $37.00.
Second, I'm discovering sources for many services/research/alternatives, etc. every month for my own PCa Gleason-8 Stage-4 journey. The medical establishment has a strong hold on what doctor do and how patients are served in the "cha-chin" pipeline. Fortunately, there is hope. Hang in there!
One of my inspirational individuals who had colon cancer himself some 12-year plus and still here to talk about his experience is Chris Wark: ChrisBeatCancer.com What impressed me the most about this young fellow are the ENDLESS video testimonials of people he presents who survived/are surviving cancers when the conventional medical "expert doctors" either gave up or told them, "there is nothing more we can do for you" and get your business in order.
Anyway, one of the videos I recently viewed was about a former very attractive monetarily (6-figures plus) successful woman pharmaceutical rep named Tara Mann. She had an "epiphany" moment. She quit her career because of what she then realized about what she was doing (marketing FDA drugs for massive profits) to people and could no longer live with herself.
She started Cancer Crack Down ( cancercrackdown.org ) which ALSO tries to help find financial & informational cancer fighting resources for those in need of help FOR FREE. Yes, they get donations from others.
Here is the YouTube video of Chris Wark and Tara Mann as she talks about her story in the video testimony. Chris has HUNDREDs of these types of real stories.
Thank you so much Herman for telling me about Ms Tara Mann, i sent her an email already and hopefully she and her team can help us. If not, its ok, i know God will provide.
Ive checked on IP6 which Calbear also recommended but too bad they do not ship here and its also quite expensive so might have to pass on this one.
I have seen some videos of Chris beat cancer and its truly an inspirational story.
God bless you and your family and to all the people in this forum who have taken the time to share their thoughts, giving us hope and encouragement we need!
I am not real big on eating healthy. Lots of people eat healthy and still get diseases. But here is a list of products you might want to look at and also check out products that have anti angiogenesis and apoptosis qualities to them.
Just approaching 7 years since dx with a PSA of 571, but Gleason 7. 7 major bone Mets. Current PSA immeasurable.
Dietary changes, none, just a healthy diet of all meats, fresh vegetables, and anything I fancy. Supplements, none. Alcohol in moderation (12 units per week). No fish at all (I’m highly allergic).
I like your take on Pca! Yes Pca should not define someone. However, in our case, we just want to be on the safe side and from time to time I let my husband eat red meat, pork or chicken because i dont want to deprive him so much too. And he eats sometimes ice cream (altho non dairy, no refined sugar, etc), dark chocolates etc. Its nice to hear that you still get to enjoy life and food!
We were also surprised last year by my husband’s diagnosis of prostate cancer. He had just had his 40th birthday 5 weeks prior. He is a Green Beret - fit as they come for the most part. Literally never had ANY health issue aside from normal wear and tear from being in the Army. We get it! Your post resinated deeply with me. You sounded exactly like me a year ago after his or really, our diagnosis. We also have 4 young children. A year into the research, there is an abundance of research, unfortunately, much of it conflicting. We read started with the book “How not to Die” by Michael Gregor. I honestly just read through the section regarding PCa and then went looked over his references for that chapter to look directly at the studies he cited. Initially we went vegan or plant based. One, actually two studies, showed 70% and 82% increased incident of lethal PCa with regular consumption of eggs due to the choline in them. One of the popular imaging studies is C-11 PET which uses the isotope choline to detect or ID PCa cells. One rad Inread said simply that PCa LOVE choline. So we try to keep that phytonutrient out of our diet. I could not tell you nor anyone else difinitively if that is truly the case in the body. Cancer is a complex disease but I believe with younger men we need to be very proactive to treat it multidimensionally- nutrition needs to be consistently on point, as does exercise and finding the best treatment for our patient. That can be tricky at times, because what works wonderfully for one guy fails miserably for another which is frustrating, no doubt. I can report now officially one year out from Gleason 9, stage 4 ( I think M1) my husband is doing great. He is working, yes, in the Army. He can’t reply because of the ADT (yet... he is working on that, oh boy!), he currently on Degarelix monthly and that is it. He was enrolled in a NIH study earlier this year but had to be dropped due to an anaphylactic reaction to chemotherapy. Our prayer has been simple, Lord leads us to the next treatment and He has. Now we are Vanderbilt. He doing well, so much different picture than one year ago. Can’t say that enough! Hang in there and if your husband wants to connect with a younger man going through this battle let me know. My husband is one here but I forgot his handle!
Its so nice to hear from somebody who is somehow in the same age group as my husband! Yes we too have eliminated egg yolk from my husband’s diet but he still eats egg white because i read somewhere that it doesnt have choline, is that correct? Even before the diagnosis, he doesnt really eat the yolk but loves the white part.
It is nice to hear that your husband is doing great now and if there’s a silver lining through all this, my husband and I became even closer and we have a much stronger faith in God! I will keep in touch with you if you dont mind one of these days. Thank you!
I'm another lady with a relatively young hubby (51) who is fit and active and just got diagnosed in June with stage 4 (bone mets everywhere) and gleason 9. He's training to do a double century ride in a couple of weeks and is doing great on his regimen (degerelix shots plus zytiga plus predisone, plus just started metformin), other than hot flashes. I also went through the whole gamut of trying to figure out what he could and couldn't eat. Right now we are moving toward pescatarian as well, but slowly, as we are both big meat eaters and are trying to finish all the meat in the freezer!
Wow double century ride! That must be fun! My husband terribly miss biking. it shouldnt be a problem but his prostate has swollen so big that it somehow blocks a portion of his rectal area. So he had trouble passing stool in the beginning, hence i did lots of juicing and high fiber food. Now he is getting better. And sitting on the bike somehow presses on his very much inflamed prostate, thats why he cant stay in the bike for a long time 😔 All the best to you and your husband!
That sucks that your hubby can't ride due to the swelling! I don't know what my hubby would do if he could not ride. You mentioned yours is a triathlete- can he still run and swim and enjoy that aspect of it?
Regarding your initial question about supplements: one supplement that I haven't seen mentioned on this thread is lycopene. There's been no definitive study that proves it prevents PCa or fights it, but there's enough observational studies indicating that it may help. As we love tomatoes, which are rich in lycopene, we do our best to add that to hubby's diet. He's also taking a small supplement of it per Dr. Charles Snuffy Meyers' book recommending it. Note that cooked tomatoes have more lycopene than raw ones. So eat up the pasta sauce!
Good news spikezoey! We tried riding the bike over the weekend and OMG my husband said it doesnt hurt anymore! He can stay now on the bike for an hour and it didnt hurt at all! Its like the swollen prostate has subsided and so i think we can slowly resume biking in the coming days 😊 Yes we do a bit of running and swimming but taking it one step at a time.
And agree 100% on tomatoes, i make my husband eat a lot of cooked tomatoes and anything with tomato paste and tomato sauce. May i ask what is the dosage that you are taking for the lycopene supplement? I will read up on Dr Snuffy Meyers, thanks for the recommendation!
So glad to hear your hubby is riding again! That will make a huge difference for him on his physical and mental health. Men who stay physically active tend to respond better to treatment.
For lycopene he is taking 10mg three times a day per Myers' recommendation to space it out for optimal results. He buys it on Amazon, I think.
He goes to Vanderbilt due to where we are stationed. So he does have an oncologist who specializes in prostate cancer which has been a blessing. They were pushing for Zytiga initially but since he responded so well to the degarelix in that his PSA have been zero out and he has had clear scans for 6 months. They were fine with him not initiating the Zytiga.
I'm another wife- husband diagnosed at 49. You can look in my profile on this site for his treatment and diagnosis. He was diagnosed during a TURP after a year and a half of what our urologist said was just enlarged prostate issues. My husband has also been very fit his whole life- he was a decathlete in college and continued being active. He was diagnosed with Gleason 9 aggressive Pca last August (2017) PSA was over 700. He decided to go full vegan the day he was diagnosed. Nothing at all from animal products. Lots of cruciferous veggies, kale, we grow our own sprouts- (broccoli sprouts, radish sprouts, and mustard- VERY easy to grow- a matter if days if putting seeds in a tray and watering. No dirt needed), limited alcohol, lots of greens, lots of types of mushrooms, and other things. We have been to a two events over this year when he has gone off- where he decided to have from a raw bar and salmon. Both times he thought afterwards that it didn't taste as good as he remembers He also takes milk thistle, a mushroom blend powder in his protein smoothies, tumeric w pepper, ... his docs say can't hurt and he doesn't feel deprived at all. He actually says the first couple weeks of changing habits was hard but now he feels his food is tastier than before. We see an integrative MD as well as our Pca team. They discuss treatments and keep in touch. My thought... I don't believe the change in nutrition is a cure but I do believe its allowed him to feel great and strong through all of his treatments this year. It's also given him a way to feel in control of something- he also switched to a more weight bearing strength workout for his bones. I'm sure I forgot something just wanted to let you know you're not alone! Lots of opinions on both sides of the issues on here- I love them all and get something out of every post and comment. I have my master's degree in research and stats so I read here and then dive in to studies. No one can tell you things for certain. It's kind if a try and see way of doing things while keeping in close touch with your docs. Keep us all posted on your progress- sending hugs ❤
Thanks pakb for all your great inputs and words of encouragement! Btw you mentioned about mushroom blend powder, somebody has given me bottles of mushroom caps with reishi, shiitake, cordyceps, turkey tail etc. and i dont want them to go to waste but I am not sure if its safe to drink with all his current medications (zytiga+pred, xgeva, eligard)? Would love to hear your views on this.
All the best to you and your husband! I am just thankful for this group who has given me tremendous hope, knowledge and courage!
I would ask his oncologist- my husband has been on Lupron continuously and through 6 rounds Taxotere and is currently on Zytiga+Prednisone. His onc has been fine with him taking it. Our integrative MD can't say enough about mushrooms so we eat them all the time also. Love them in homemade miso soup with scallions and leeks. (I make veggie broth and we use organic barkey miso paste). We also saute several types with bok choy a few times a week. Our oncology team doesn't think any of the nutrition we do will interfere- and could enhance. We just added one thing at a time so if there had been any interference or reaction we would know that the last added probably caused it.
This group is truly amazing. It's been a great source of info for me- even the opinions I don't agree with I learn from 😊
I can relate to your shock having PCa myself recently officially diagnosed. Gleason-8 (4+4) stage-4 with five bone mets and I'm doing fine. For now, I'm on Lupron/Casodex to assist with lowering my PSA. Mine went from a high of 55 PSA to a low 0.40 PSA in about four weeks. I do a great many supplements as well. I refused XGeva since it will alter your immune system functions. All you have is your immune system to keep you alive and fight off cancer cell damage. I'm taking AlgaeCal Bone Builder Plus supplements. Bone mets are stable (had another scan to prove it). My medical oncologist never heard of it, yet after a few more MRI scans he said I'll see you in one year for your annual checkup. You are doing great!
Yes, a shift in eating lifestyle change does make a difference. You need to shift to a non-GMO, organic food sources. Daily juicing is a must do because it is the most efficient way to feed your body/cells the nutrients it needs to slowly heal/repair. Drinking the pure fluids with enzymes allows the body to use less energy (digestive breakdown). The enzymes are quickly infused. GMOs are slowly killing off the population world wide. The body does heal itself IF you can catch it early enough and stay with the diet changes. The reality of your husband's PCa situation means he has to come to terms (inner/spiritual peace) with what's ahead. He will need to learn to "eat for fueling his body and not for purely satisfying his taste buds." Food today is engineered/processed to taste good and make you addicted to that taste. It's more chemicals with few real food nutrients. Your brain is tricked for a while, but you body knows the difference. Quote by Socrates: "Thou shouldst EAT TO live, NOT live to eat!
Not satisfied (nourished) after you eat something and keep loading up on the calories which then the body needs to break down all that fake food? Between the chemical ingredients/preservatives that make you want more and the lack of food substance/nutrient in what you do eat, you are still hungry afterwards.
I loss 65-lbs. in 6-months without exercise, without counting calories. My BMI went down two zones and I was NEVER hungry as I adjusted my mind set. I just cold turkey cut out all meats & dairy. Need a motivator? Watch the movie, What The Health on Netflix or on the web site: whatthehealthfilm.com/ If that movie does not motivate you to consider a change, you've made your choice and will experience the potential consequences.
Bread is habit forming and 99% of the ones sold have sugar in it. Man, did I love eating my bread with loads of butter. But, it was not good for me. No more! Sugar as you may know, is a fuel source for any cancer. Ezekiel bread is as healthy as a bread gets just like in the Bible. The ingredients are identical and No sugar in it!
Here is how you can make is an easier diet transition for your family. Yes, it far easier if you and your husband are on the same page working towards getting healthy. Otherwise, your food preparation time/cost will wear you out and cause problems for his recovery. You'll be altering your bread consumption for a healthy alternative. You mix prepare the organic low fat cottage cheese with the flax-seed oil as in the Budwig Protocol tinyurl.com/y7cafm9w
You take the mixed/prepared cottage cheese (Budwig Protocol) and spread it on the bread. I eat two lightly toasted slices with the cottage cheese spread each morning. But, there is nothing to stop you from eating this mix more often during the day as you create a new diet plan. Doing/preparing it this way will serve due purposes. The Ezekiel bread is made from organic whole grains and legumes that have started germinating (sprouting). That's good! The Budwig Protocol is another cancer fighting alternative. You are synergically combining both. Adding this small meal to your daily diet intake will start to provide your cells with more nutrients and not sugar. It's a mental reprogramming that will not be that hard to do.
As a side note, I also grow/consume my own sprouts and wheatgrass in my home indoors. If I can do it, so can others. I'm 66-years old and next year (2019) I'm retiring and I guess I have my next chapter in my life, staying alive, blessed and mentally active!
Read more about the Ezekiel bread here: healthline.com/nutrition/ez... You can buy it a Whole Foods or a Trader Joe's. Heck, you can even mail order it from Amazon.
Anyway, there are some good ideas being presented by the others on this forum. Thank you. I have written some down and I will research them to tweak some of the things I do daily myself.
If you read my postings, I love to teach what I do/done for myself in the same medical situation. My mindmap comes from the Healthy Cell Concept by Al Carter. Watch his videos produced many years ago. tinyurl.com/yd8rgu2b It's helped me and my wife greatly. We started with a overall plan following the Healthy Cell Concept four parts. Then we tweaked each required task/changes to make it work for us. Quite simple when you have a solid plan and a computer to do simple research/lookups or forums like this.
With a game plan you can then better adjust what you can afford to pay/time and what works for you to improve your health. If you are not comfortable with the changes/adjustments needed you will NEVER succeed and make it work for you. As you do make the needed lifestyle changes, your body will respond and will tell you. You'll know! I'm a bottom line results oriented man all my life and I'm blessed, at peace, relieved that I found/read about the Healthy Cell Concept and made it work for my family.
PS - There is one supplement called IP6 that has made all the difference for me and many others I have been in contact. It's called IP6 and you can read about it at: ip-6.net/ At the first page near the bottom is a link for the FREE ebook entitled: To Good To Be True! which details the extensive PROVEN uses for IP6 which includes prostate cancer. The fellow who turned me on to it (CalBear74) himself is a 70-plus gent with advanced PCa and is doing great and obviously still alive. Thanks CalBear74.
Finally, I attended this year a three day Raw Food Retreat and met a fellow and his wife who are now my wife and I close buddies. I don't have many male friends and it was great that his wife and mine also clicked. Anyway, he loaned me a book by Ty Bollinger called, "Cancer - Step Outside The Box." Soon, I purchased my own copy, it was that valuable.
I discovered some of the things I had already started doing after many hours of research were in this one book. Plus, there were literally hundreds more I had not even heard of. The first thing that went through my mind was; "Wow, I'm glad I'm using some effective protocols and here are more that I can review that others did and saved their lives."
Wow im learning so many things here! Ill have a look at ezekiel bread here or will try to order from amazon. Not sure though if its safe to order bread from amazon because we are not from the US. We live here in the Philippines across the Pacific Ocean. I will have a look at the book and videos you have recommended and oh that IP6 supplements that ive been seeing also in other posts. Thank you so much herman and more power!
Sorry to hear this monster has such a young man in its grip. Stage 4 here as well. My nutritionist said the most important thing was to keep up the weight so his body can fight this monster, quote. Eat anything you can stand to eat. The cancer will make its own sugar no matter what you eat. Keep him on the monthly shots and blood tests as they keep me going . Fight the good Fight
I’m sorry to hear about your husband’s diagnosis, especially at such a young age. He’s not alone. We all wonder how we got PCa, especially the aggressive variety that put us at Stage 4 at diagnosis, when we have no known risk factors for PCa.
The two most controversial and divisive topics in this forum are diet/nutrition, and supplements/ complementary therapies. The opinions I have seen in here on diet/nutrition run the gamut from a member whose oncologist at a well respected medical center told him that it doesn’t matter what you eat because nothing you eat alters the course of PCa, to members who either on their own or T the recommendation of a medical doctor or nutritionist, have adopted various exclusionary diets (e.g. no red meat, sugar, fats, etc.). Several have made radical dietary changes...gone totally vegan, eliminated all sugars, etc., etc., thinking that this will slow the progression of their disease. Some of these might work, others might actually do more harm than good. Who knows? Same with supplements. I use some (curcumin with bioperine, Zyflamend, pomegranate, and Prosteon for bones, and sulforaphane, but honestly I have no idea how much they are helping me, beyond a placebo effect. There’s no way to quantify it. Many other complementary therapies (think baking soda, hydrogen peroxide, etc.) are equally controversial.
I also take Metformin, but that was prescribed by my family doctor for borderline Type 2 diabetes, even though there is some evidence that Metformin works synergistically with ADT, improves the efficacy of the ADT drugs, and increases PFS. There is some medical evidence to support this.
I think Tall_Allen’s response might be the best..the one that starts with, “remember to treat him as a human being, and not as a patient. Let him enjoy the foods he likes...”. Be supportive and positive. I don’t know what I would do without my wonderful wife to keep me going. There’s a lot to be said for having a good quality of life.
Chart your own course in terms of diet and supplements, and do your own research including the pros and cons of everything you are considering. Exercise, but make it enjoyable, not a brutal boot camp regimen. If he enjoys triathlons, encourage him to continue that to the best of his ability. I enjoy playing terrible golf, and do it at least 3 times a week, even when I was going through chemotherapy. It is cathartic, and takes my mind off other things that are far more unpleasant than a double bogey. Take all the advice you get in here with a grain of salt (not literally, of course 😎), and treasure each new day as the gift that it is.
Best wishes to your husband and you for a long and happy life together.
Thank you Litlerny for all the kind words. My husband loves loves red meat so much and thats somehow where the struggle is in the beginning. He didnt eat vegetables for most of his adult life and only ate loads of red meat, processed foods, junk foods etc. But slowly, he is embracing the pescatarian diet and tolerates fresh juices. Eating healthier foods now i believe is helping him become stronger while undergoing treatment. Best wishes to you and your wife as well.
I really hate to hear of such a relatively young, accomplished athlete having to fight cancer.Here are two posts of mine on the use of natural supplements which I strongly advocate. I am also very troubled that physicians of all specialties fail to keep up-to-date on natural supplements, especially those complementary to leading edge oncology for prostate cancer treatment. Please read these and message me for additional details on how to take any particular supplement(s):
Finally, i carefully screen all bread to understand its ingredients and compatibility with vegan standards. Dr. Greger uses the term "whole plant food diet". This is probably far better. He also offers a downloadable app: "The Daily Dozen".
Have you seen "What the Health"? Very entertaining. I am encountering many young (twenty somethings) who have seen it and converted to whole plant food eating.
Thanks Calbear! I will read and watch the links you gave. I am glad I am learning a lot here from many wonderful people willing to share what they know and what helped them in their journey! All the best!
Please make careful note of the personal testimonials I quoted in the first linked post dealing with Dr. Shamsuddin's research on IP6. This is the most important supplement I have taken among the many I use. A brief family anecdote: my niece who is a competitive marathoner heard I was taking IP6 and asked for guidance on using it. She said she had breast cysts that were bothering her. In few short weeks they were gone. What she had not told me was she had a throat tumor being monitored by her ENT. That too disappeared and that was a "big deal" for her physician; it caused him to interrogate her about everything she had been doing in diet management that could explain it. She could only point to the IP6 which she still takes 2 years later.
Unfortunately IP6 supplement i saw on Amazon does not ship here in the Philippines and its quite expensive so I am really sad but there’s no way I can incorporate it in our regimen 😢
Amazon is not a good source. Their offers on IP6 can be pricey. I only get Enzymatic Therapy's IP6 & Inositol Powder. I purchase from allstarhealth.com. They ship internationally to select countries. IP6 is also available in Japan - I believe - but I do not know the brand names. I don't doubt that a native herbalist doctor in the Philippines would have familiarity with inositol hexaphosphate but it might be under another name - my Tagalog is rusty.LOL It might also be known as phytate or phytic acid. Remember it is derived from rice husks. Dr. Shamsuddin himself is originally from Bangladesh (40 years ago). I can write him about your problem if you can't locate a local supplier. I would find what is called a naturopathic physician. Are you in Manila? A large city is the best bet I suppose. Hope this helps.
You are on the right track. I became a vegetarian a few days after diagnosis. That was 25 years ago, I was 42 years old.
As for supplements, you have a good list from the others here. The only thing I would add is selenium with vitamin E. Your vitamin d should be D3. Also look into IP6.
Your post has generated some great responses. Keep up the great work.
Wow 25 years into remission? Thats so good to hear, success stories such as yours is giving me and my husband so much hope! Yes he is taking vit d3 (5000IU) with calcium (650mg) daily. He has a little intake selenium and vit E from his multivit because im abit worried abt the findings from the Select trial. All the best!
Google (or YoutubeJ Dr. Thomas Seyfert or get the book “ Fight Cancer with a Ketogenic Diet” by Ellen Davis. Their approach is that cancer is a netabolic disease and they are very reputable scientists whose opinions are backed by data.
Also, I recommend getting hold of a series of DVDs like “surviving prostate cancer” or “Chris beat cancer” (Google Dr. Jake Ames). These series contain a lot of good information. One of the important threads that runs through them is that you have to change your lifestyle. It took me a while for this sense of personal responsibility to sink in, but I now understand it and have added meditation and breathing exercises to my daily routine.
Finally, I have changed the description of my relationship to PCa. I used to think of it in an antagonistic way and employed terms like “fight” and “battle” to describe my “struggle”. with cancer. Now I refer to this relationship as waltzing. I just want to lead this partner over to a comfortable chair by the punchbowl, leave and wave back every so often.
Bless you DV--almost the same situation--44 years old when diagnosed, athletic, two small kids...10 years in but PSA is slowly rising with two small hip mets and on Zytiga now...so thankful for being able to watch my kids grow into teenagers, watch my son be a Little League hero, watch my daughter dance.... travel, exercise (very important) etc. Stay positive!!! Play with the kids! They're the strength! Go for walks! As for diet, I'm along with TommyTV--just a good healthy overall diet--don't know if your husband drinks, but if wants a beer, let him have beer!
Thanks samahieb but my husband doesnt drink alcohol. One bottle of beer and he will be diving into a very deep sleep 😂 However, he used to smoke quite a lot (he used to work for a tobacco company) and which i feel that it had a lot to do of him getting Pca. But, he went cold turkey on the cigarettes already after diagnosis so hopefully all toxins from those tobaccos will be flushed out.
Just bought BroccoMax 120 30mg from Vitacost. After 20% discount (4.99 shipping to California USA) Cost was $28.95. Only allowed me to buy 1 bottle. Got the next day. This is for the sulforaphane which may do some good as per Tall_Allen. Considering adding Metformin. Need to msg. Dr. re adding Celebrex to Xgeva but think she will resist. Tossed my multivitamins away awhile back. Will continue vitamin D until they are gone and then done with them. So only supplement will be the sulforaphane. Keeping it simple. I eat and drink (and unfortunately smoke) what ever I want. Am 68 dx. Mar 2017. Psa .3 after 1 year on Xtandi. Waiting for it to fail and then on with the show let's go! Started with psa 59.9, extensive bone mets and some lymph mets. So similar to your hubby. Chemo knocked out lymph node mets and bone mets are "under control". If your hubby had chemo I missed it. Seems like should be early part of game plan? Know you guys love each other dearly, but if my wife, who passed years ago, told me what to eat and etc. it would have been- To the moon Alice! Always remember, you are his wife, not his mother. And always remember those who have taken my advice have always regretted it. So sorry you are having to deal with the dollar cost of all this. I can hardly even image that. Good luck on your journey.
I am now looking where to find sulforphane as what Allen also suggested. We havent gone through docetaxel yet if thats what you meant to ask, first line of of treatment were Casodex, Eligard, Xgeva and Zytiga.
And oh my husband would be so happy if i show to him that you are still smoking (which i wouldnt of course 😝) while undergoing treatment. Have fun and all the best!
Greetings to dvcarola: Can I assume that Phils (or as I call it the Pines) is the Philippines? If so, who is his Urologist, and/or Oncologist? In metro Manila? Which hospital? From a real ba-doo-ie.
Hi john, yes we live in the Philippines (sorry i didnt mention it earlier) and in Manila particularly. Hubby’s uro onco is Dr Dennis Serrano and is the head in the National Kidney Institute here in the Phils. He is a well known doctor and such a very long line of patients everyday. Our hospital is St Luke’s hospital, one of the best hospitals here but also the most expensive. We have another doctor from same hospital, med onco, Dr Gerry Cornelio and is also known here and I heard he had trainings in Memorial Sloan Kettering.
I have found a health food & natural supplement supplier in the Phils "Biovea". They carry Jarrow's IP6 tablets. Taking straight tabs is actually not optimal according to Dr. Shamsuddin. His studies of IP6 performance found that to optimize you should mix it about 70% inositol hexaphosphate and 30% plain inositol. NOW brand carries plain inositol ( a type of vitamin B). I originally did that in 2015 until I found the powder. Biovea may be able to get the powder or might have it in stock already. I understand IP6 is popular in Japan so they may have it already in a blended form. Enzymatic Therapy and the other American brands all blend the two.
I have reviewed ALL the posts here. I have identified many statements that are provably false - but not done with any malicious intent - and can be demonstrated to be invalid propositions by review of cancer journal findings at pubmed.gov. To verify your supplement interests: Enter the name of the supplement and "prostate cancer" and typically many article abstracts will list. Keep in mind, quality journals publishing refereed articles (reviewed by peers and approved thereby for publication) may publish occasionally unreliable results. Please go forward slowly and validate every supplement decision through your own reading. Supplements can be pricey.
I spent close to 30 years in the health care sector, both hospitals and medical software, and I learned it is a world that attracts many types of people: some caregivers, others patients, all imperfect.
Red meat is frowned upon, but what's wrong with chicken? Breads and other starches turn into sugar and fruits are sugary too. I limit sugar and starches just to prevent weight gain. This is a tough thing to deal with at a young age but others here are in the same boat. You are in a good place here. Best wishes.
I haven't heard that. You might be right. I've heard that red meat and dairy are problematic but that's news to me about chicken. Some people recommend the vegan lifestyle but I'm old and it would be tough to make drastic changes to my diet, or should I say 'our' diet, as I am married. I'll give you credit for being willing to change your diet in order to help your husband.
The comment above and link was intended for WSOpeddie; I am hoping he will recognize the research has gone beyond "problematic". I didn't tell him I am 76 and I was 75 when I became a strict vegan. It is challenging at first for anyone regardless of age, but certainly achievable. Becoming a paratrooper at 17 - that was difficult, whole plant food diets are not, but I found that because my mother had raised me on a heavy diet of vegetables (she grew them herself in the 1940's to save money) the transition was not really traumatic. On chicken: I would not have a raw chicken in the house without inviting in a HAZMAT team. As for cooked chicken, I chop it up for my dogs; never touch the stuff because of the abundant research findings on its carcinogenic potential. I want my PSA to go down not up.
I am going bike riding and see if I can spot some gators. I wonder if they have prostates? I doubt it. Evolution was kind.
Is free range chicken also bad? My husband rarely eats chicken now but my 3 kids love them, im slowly introducing more veggies and fruits into the family’s diet but its very challenging for the kids
Chicken is chicken, the rest is marketing. I have a similar challenge with my grandson (4th grade) and granddaughter (1st grade) who come for dinner at least twice a week. We make sure they get plenty of vegetables (broccoli is one major success believe it or not), berries (plenty of blueberries and strawberries are devoured - see Greger's discussion of berries research in "How Not To Die", chapter on digestive diseases). Our challenge is our grandson and we face his aversion to some foods. We would be happy if he would like free range chicken. He is so skinny and small for his age group unlike his dad who was very muscular though small (our sons are Korean) at the same age. I say for kids do what you can and hope they read the right books when they reach their teen years. He will go for pasta with traditional marinara. Our granddaughter is ready to eat almost anything we put in front of her -chicken, burgers, spaghetti, broccoli is a big winner she insists on. We are not trying to make little vegans out of them. Time enough.
Yessss its so hard to encourage small kids to eat healthy, my youngest too is skinny 😔 You mentioned your sons are korean, i suddenly missed kimchi, samgyupsal and all the yummy korean food back in yr 2012-2015 when we used to live in busan, korea, lovely place! 😊
Our married daughter was adopted from a Busan orphanage at the age of four. She like her brothers loved everything we put down on the table, which included an abundance of Korean food we were able to get from Korean markets. Our sons are both career men in the military: one is a Marine medic and the other an Army major in communications/high tech. They like their careers. We never had the same level of feeding challenges we have with our grandchildren.
I learned to love kimchi, gopdoogi (spelling?) and other traditional side dishes. Of course, I have given up Korean beef, chicken, pork - they were so good!
Oh wow such very kind hearted people! You and your wife must be so happy now looking at how your kids grew up so well!
Btw, I also love tteokbokki and the variety of side dishes and yes we recently gave up on korean bbqs which we used to frequent every friday night in busan and even when we went back here in the phils... onwards to a more healthy diet 👍
I am so sorry for your situation, 63 replies, so many caring people giving you advice. This thing rattles you to the core. Why?... How?.... Why us?.... It can become ALL consuming.
My wife and I just started the very same journey on May 8th, the same diagnosis/gleason score, same drugs and we have young kids. I really do understand the despair.
Close the diet books, close the laptop lid. Take a deep breathe and go find your husband. You sound like an incredible woman already. He already has what he is going to need to fight this.... you!!
As crazy and insane as this sounds, my cancer has actually helped me. I have reached levels of loving, caring, appreciation and gratitude I never knew existed.
And holding my wife's hand is the best vitamin/supplement in the world. We really don't need anything else. Do not let this take away the enjoyment of sharing a good meal with him also, I love all foods and cooking with my wife. I/we make sourdough bread all the time and enjoy it with giant slabs of real butter. Real food...and my PSA is still at 0.1
Just be with him..be present..you are all he needs.
You are making me tear up, thank you for your very kind words! I have cried a bucket of tears especially after the diagnosis, so many questions, so many fears, feeling lost. I find comfort in prayers and yes we spend more time together now (watching movies, going on dates) which is giving him the strength that he needs. I will continue doing that and hopefully we can spend many more years together! All the best to you and your loving wife as well!
Listen to TALL_ALLEN he is a wealth of information...
*It sounds like he gets all the micronutrients he can use from the foods he eats - our body's evolved to do that. There are co-factors and enzymes in foods that are not included in pills that increase bioavailability. There really is no reason for most people to take vitamins.*
A word about the philosophy of "getting all the micronutrients" you need from foods. It all on depends on the "micronutrients" chosen. As a vegan i need to supplement with B12 or I am in trouble; also, I am carefully avoiding through veganism/aka whole plant foods other foods having certain chemicals, call them micronutrients, but these can be harmful and major contributors to inflammation. (BTW, Vitamin D is a hormone not a vitamin that is needed by supplementation for some people, especially in particular climates at certain times of the year.) Arachidonic acid is a chemical we derive from food that the evolutionary path has delivered to our omnivore bodies and it can be an agent contributing to a mulitude of health problems via inflammatory processes. Here is Dr. Greger's take on the issue:
Bovine milk - ideal for a baby bovine of 600 lbs. but not humans: For a reconsideration of milk and dairy products' contributions to disease, Joseph Keon's lecture is unmatched. It can be located at youtube under the title "Whitewash, The Disturbing Truth About Cow's Milk and Your Health by Joseph Keon".
Its very hard to drastically change my husband’s diet to vegan, pescatarian is more palatable for him with some rare intakes of chicken, pork. Aside from fruit and veggies, he consumes a lot of nuts like cashew, almonds, walnuts for snack, is that ok? If so, what is the limit? As for milk, he doesnt really like it even before he was diagnosed. But, how about cheese and egg white, are they safe? Should I cut it out for good or can be taken sometimes? Appreciate your feedback.
Whatever gets him down that path to start is critical. I found viewing Dr. Joel Furhrman (former Olympic competitive figure skater as a young man in pairs with his sister) who is a primary care doctor and sports medicine specialist is helpful. He won't use the V word; he calls it becoming a "nutritarian". Dr. Greger never uses it any longer and calls it eating "whole plant food based diets". Dr. Fuhrman's videos are listed at youtube. Of course, Dr. Greger and Dr. MacDougal are very motivational and the best. Watching "What the Health" together can actually be fun.
The commitment will not happen overnight; he needs to understand how critical diet can be in fighting cancer. These two videos must be viewed and they take no more than 7 minutes each:
It is pretty normal to be in denial and not fully realize that it will never be the "old" normal again. Open sharing of the terrible grief may be helpful. Then move on once again. The war metaphor applies. He is in special ops now.
Well said, Dean. Some of the best advice I’ve seen, including occasionally enjoying foods that many people have totally written off. I share the thoughts and feelings you expressed above about having a new appreciation for those we love, and things we used to take for granted, and a heightened sense of caring, love, and gratitude for all the ways are lives are blessed in spite of our cancer diagnosis. My wife is my rock. Have a great day!
In addition to what others have mentioned, I eat German rye bread and have taken the following supplements. You can Google on any of them with prostate cancer verbiage to assess. While these have purported benefits for anti-PCa / anti-inflammatory activity, studies done at cellular levels may turn out to have no real benefits in the body, have side effects, interact in unknown ways, not be appropriate for individual situation, etc. Use caution and good judgment, and understand there are no magic bullets. I am in no way suggesting taking any of these, just some things to look into.
AMPK-Activator (hesperidin, gynostemma)
Apigenin
Apple peel
Aspirin, low dose
Berberine
Beta Sitosterol
Blueberry extract
Boswellia
Chinese skullcap
ComfortMax (PEA, Honokiol)
Cruciferous Vegetable Extract
Curcumin
Diindolylmethane
Flax seed
Fucoidan
Grape seed extract
Holy Basil Extract
IP-6/Inositol
Jujube fruit
Lycopene
Melatonin
Milk Thistle Extract
Modified Citrus Pectin, Fractionated
Mushroom powder / extract
Neem
Oil of oregano extract
Quercetin
Rosemary extract
Trans-pterostilbene
Tri-Sugar Shield
Additionally I was recommended by M.D. Anderson M.O. to take the following prescription meds which may possibly be of benefit for PCa (as off-label usage supported by some studies):
anti-diabetes drug Metformin
a beta-blocker (carvedilol in my case)
(Since being on the prescriptions, I had to eliminate some of the supplements above because of G.I. upsets or overlapping blood-sugar lowering effects with Metformin.)
Hi there, we are in the same boat, although older. Yes, everything I've read and medical professionals I've talked to recommend a low fat, little to no animal protein diet. Ironically, my husband started eating like this a few months ago after watching the film, "Forks Over Knives." I met two cardiologists the other day who are vegan since watching that movie. So, we do what we can. I believe that men with prostate cancer have to be proactive. Some do well with this disease! God bless.
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I don't know what my hubby would do if he could not ride. You mentioned yours is a triathlete- can he still run and swim and enjoy that aspect of it?
My father diagnosed with Advanced prostate cancer
prostate cancer in bladder - removed - now renal failure
Advanced prostate cancer and Low Hb.
