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Advanced Prostate Cancer
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New guy here

Hello, I happy to have found this forum.

My name is Danny.

PSA 30

1. Prostate, right, biopsy:

-- Adenocarcinoma, Gleason score 3+ 4 = 7 (Grade group 2),

2. Prostate, left, biopsy:

-- Adenocarcinoma, Gleason score 5 + 4 = 9 (Grade group 5),

I was diagnosed Sept 2017. I had just turned 53. It completely rocked my world as I'm sure it has done to each of you going through this. I had the initial biopsy a couple days after my primary doctor gave the suspected news. I had several body scans, CT, Bone scan. On top of the tumors on the prostate they found a couple Lymph nodes with tumors also. I started ADT treatment Lupron 6 month injections about 3 weeks later. In Dec 2017 I started my round of external beam radiation treatment. It lasted throughout Jan of 2018. I then immediately had a Brachy Therapy treatment. I have been on Lupron injections every 6 months since then. I have had PSA checks every 3 months. Last check was .77

As mentioned I was only 53. A bit younger than the average guy. I have always lived a healthy lifestyle and am in good physical shape. Visiting the gym has been an almost daily habit for as long as I can remember. I never stopped my gym workouts even throughout all my radiation treatments. It was tough.

The ADT treatment had started to take its toll on me. I began to lose a noticeable amount of strength and started to get more body fat within the last 6 months.

I really want to find a solution to combat this. I have taken Amino Acids, Beef Liver Tablets and Creatine over the last month, but I am unsure if these supplements are risky to be taking or not. These supplements have helped me gain some strength back and I lost some fat, but I have also noticed some of my urinary side effects have returned. I am stopping these supplements to see if the side effects stop. I have asked my doctors, but basically get no help as they don't advise on this stuff and the supplement people tell me to consult my doctor.

Any advice would be appreciated

31 Replies
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Hopefully your brachy boost therapy + long-term Lupron got it all.

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Amen

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Many patients take Metformin to combat weight gain during ADT. See this video with Dr. Myers:

At the end he says: ".... the argument for using metformin predominantly now is for the prevention of prediabetes and metabolic syndrome in patients on hormonal therapy "

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I have read that, on ADT, a patient experiences mitochondrial dysfunction. Mitochondria are tiny organelles inside cells that breakdown carbohydrates derived from food and use the energy released by the breakdown to synthesize molecules of ATP (adenosine tri-phosphate) that, in turn, provide usable energy to our muscles and other types of cells. One treatment that is known for sure to restore mitochondrial function is exercise. It won't restore it to 100%, but can keep you from declining into a complete couch potato.

I found under Lupron that I could not keep up my hard (for me) workouts of 4 miles in 36 minutes on a treadmill. I was reduced to 1 mile in 11 minutes. But I kept that up doggedly and found myself with enough energy to go to work every day, go on 5 and 6 mile hikes in the hills, and live a pretty normal life. Careful eating took care of weight gain.

So much for the tried and true techniques - which you have been doing. Other alternatives that seem riskier to me but which you may want to investigate are bipolar androgen therapy ("BAT") and some experimental drugs for mitochondrial health - I believe there are one or two in clinical trials but I don't remember what they're called.

I don't know anything about the supplements you've taken or whether other useful supplements are available. There are people in this forum who know more about that than I do.

Best of luck.

Alan

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Thanks for the info

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Thanks for the info

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IMO Only, I would stay with the amino's, and use what body builders use--->Muscletech's Whey Isolate Protein Powder---try for 60 grams of protein a day with minimal carbs, by foregoing, breads, pizza, all products with flour, and anything with added sugar. The liver tablets, are good to help formation of red blood cells, which we need when on ADT. As for creatine, we here discussed this to death a couple of years ago--and we found nothing negative. Creatine brings water to the muscles, so it is needed every day by some body builders. But today everyone is looking for Nitric Oxide. Some like myself use L-arginine prior to workouts to increase blood flow to the muscles. This generates Nitric Oxide, at 2-3 grams.

Check out my post; Nalakrats Exposes Himself. I AM 75, And did near 2 years of ADT. It takes hard work!

Nalakrats

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Thank you for your reply and the information. It was your discussion about Creatine you had a couple years ago that I found that led me to this forum.

I have had very good luck on the supplements that I mentioned, but have found my urinary side affects are back. I am going to weed myself off of all of the supplements and see what happens and then maybe start back up again with one at a time and see what happens. Thanks

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A lot of minor Urinary Side Effects, can be eliminated, by the use of Cold Pressed 100% Natural Cranbury Juice---8 ounces/twice a day--not prescribing, just reporting.

Nalakrats

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Thank you

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Urinary problems can be helped with Oxybutynin (UK prescribed name).

Prostate supplement Lycopene is recommended generally.

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I did gain a little bit of body fat on ADT (7/2012-present). Aerobic exercise is keeping my BMI at or near 25. I swim laps 4 days a week (30 minutes each time). Do what you enjoy doing. I also got a trainer to give me a one hour regimen in the weight room, but have fallen very short of following through on that.

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Hi Eugmn,

There has been a lot of discussion here about many things in your post, although not much about brachytherapy. The Pca in your PG may become well controlled over coming years but the mets outside your PG will probably give a lot of trouble, and maybe there are a lot more microscopic sized mets which no scans can see until they grow big enough.

There are a number of treatments for the mets. and the discussions so far on a lot of subjects can be read by using this sites facilities to focus on subjects, or on any one person who may have posted about many subjects. To get as long a life as possible, with high QOL, I'd suggest you learn more about Pca and medical treatments by reading as much as you can. I was diagnosed at 62, in 2009, Gleason 9, inoperable, with Pca widely spread yet I have enjoyed good life since then, and I am not ready to quit the fight against Pca yet.

Each man's fight with Pca will be different, what happens after any given treatment may be very different between any 2 or more men, so you need the best doctors you can afford. And remember when a doctor says "this will work", he really can only means "this is what I think might work". Doctors are not magicians or miracle workers. The body has infinite complexity. I think it is better to know something of what you are afraid of.....

My best regards,

Patrick Turner.

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I have been on adt and Zytega now for 18 months. I was so scared about the side affects and My MO said weight training is the key. I hired a personal trainer. One of those meat head body builder types but knows what he is doing so I don’t get injured. He won’t listen to any excuses I have about no testosterone.. Expensive but well worth it. My previous gym visits were a joke compared to the three 70 minute workouts a week I do now. All weights and weight machines to all muscle groups. I go from station to station and go to exhaustion. My heart rate is over 120 the whole time. Each visit I swear will be my last. He pushes me so fricken hard. Not super heavy weights but 3 to four sets of 20 and sometime to 50 with very light weights. I eat healthy but cheat with a cocktail (or two) and some low fat ice cream. But only two meals a day. Noon and 7pm. I’ve lost 8 pounds from 200 to 192 at 6’2” and have more muscle and less body fat (17% vs 15%) than when I started. Personal message me if you want to see before and after pictures to prove it can be done. Hard work for sure but I feel great. You can do it if you’re willing to pay the price. It’s amazing what one can do if determined. And the bonus is lower fat is associated with better PC outcomes. Good luck my friend.

Schwah.

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Thank for the info. It appears we share the same treatment as well as our approach to fitness.

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I was DX 5 years ago at 55, so pretty close to your age. I’ve been on ADT since day one. For me, eating a Mediterranean diet advocated by Snuffy Myers and limiting carbs and only eating brown carbs has worked well. I’ve lost 25-30 lbs and now have a normal BMI. I excercise daily, and put in a minimum 150 minutes a week. I do brisk walks and hiking together with dumbbells and resistance bands and core exercises. I can’t say I’ve built muscle, I doubt that’s possible with no T but I’ve managed to stay lean and toned which is the goal. And the exercise helps offset ADT SE’s, so I do it even when I don’t want to.

On the outside I probably look better than I have since my younger days. I figure it makes it easier for my body to try and deal with PCa and related SE’s if I try and keep everything else in good working order.

Ed

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Here are a two of my older posts that contain information several people here have found helpful. Just message me for any details. BTW, giving up those supplements is a good idea. They are appropriate for weight lifters and body builders; you have a different kind of battle ahead.

healthunlocked.com/advanced...

healthunlocked.com/advanced...

For food management:

nutritionfacts.org/video/tr...

nutritionfacts.org/video/tr...

Fighting cancer with phytates (aka "IP6", "phytic acid"," inositol hexaphosphate") is a popular strategy which I use myself.

nutritionfacts.org/2015/05/...

nutritionfacts.org/video/ph...

nutritionfacts.org/video/ph...

nutritionfacts.org/video/ho...

Good luck. CalBear74

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Thank you for the info. I appreciate it

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Whenever I see someone with Gleason 9 or 10, I suggest genomic testing if they have not yet had it done.

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Beef liver tablets! Whoah! You bring back memories of the days of Vince Gironda. Look at Solgars Brewers Yeast. It is vegan and has the complete amino acid profile, protein and other nutrients. Mix it with some Maximum Vibrance you have a good shake with nutrition and protein. I often make a blended drink of seeds, nuts, the powders I mentioned above, frozen blueberries and some other things. Seeds and nuts are germinating foods. Blueberries are very good for those of us with cancer tendencies. The seeds are chia, flax, sesame, sunflower and pumpkin. The nuts are walnut and almond. I add some raw wheat germ, cacao, amla powder. Garden of Life has some excellent powders and Sun Warrior does as well. They have the aminos as well. By blending this the seeds are "opened" and very much available for rapid digestion. The Maximum Vibrance and other powders have probiotics to help digestion. I take some freshy ground black pepper and a bromelain caplet at the same time, for the same reason, digestion. Usually before drinking this I take a tablespoon of high quality flax oil, (it is essential to refrigerate flax oil once opened), and a tablespoon of Pumpkinol. If you drink this before your workout and maybe save some for after you should get good results. There is a large amount of quality nutrition in the drink which also has many cancer preventive nutrients as well.

I start the drink with spring water and add the seeds on a slow blending speed. I increase the speed as more ingredients are added. The drink becomes a liquid. I store the carafe in the freezer to keep the temperature down as the drink will heat as it is blended. The frozen blueberries are added at the end to bring the temperature back down.

Don't store this drink for any length of time as you have just released the nutrients in the seeds and the drink should taken as soon as possible. You may take any supplements you wish with it. I do. I have even bended a good multi-vitamin in the drink at times.

I became a vegan last year. Years ago I began a switch to organic, grass feed, free range and so on animal products. I had eliminated and reduced much of the animal products that I consumed by 2018. After reading about Ruth Heidrich and her success in fighting cancer by becoming a vegan I became a vegan. It was difficult at first but I have not only accepted being a vegan but wouldn't want to eat an animal product.

The member that posted about Metformin, well, it is nice that Metformin helps in maintaining body weight but I take it for another reason. Metformin has been found to help prevent cancer and informed urologists and doctors prescribe it for their prostate cancer patients. It has also been found that statins help prevent recurrence. I take the lowest dose available, 10 mg of Atorvastatin daily.

Best wishes,

Currumpaw

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Like you I have always been in excellent health and aside from the cancer, I still am. though at 76 I have a few years on you. I have also been a regular "gym rat" and credit that to the fact that the side effects from therapy have always been pretty mild. (Also I'm a tough old buzzard.)

Between the cancer and the therapy regimen, your body is undergoing some unusual strains. Be careful what else you do to it. I've always eaten healthy (I'm the cook in the family) and never used supplements. What effect they would have besides the placebo effect, I don't know. We're all different. But a good rule of thumb is to use a little of whatever it is and check the results. And remember, more isn't always better; there's an optimal amount and when you get beyond that, you can cause more damage.

Hang in there and remember ATTITUDE IS EVERYTHING!

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Decline into a complete couch potato? I already was a couch potato. Guess now I'm a couch tater. BTW, got my lupron shot yesterday and remember what hell my recumbent (love that word) bicycle caused my right cheek last time. So will give myself a couple of days off. How does that saying go? Excuses spring eternal in the human breast. I did learn to try and start drugs and the few supplements I take one at a time if possible. Thought it was the BroccoMax giving me such ghastly gas problems. Even the cats were looking at me saying "Dude, for god's sake could you open the door and let us out." But, no, it was the Celebrex. Still working on the issue cause I understand the Celebrex may help me to live a week or two longer. Just hoping those weeks aren't in intensive care. Hoping you have sunshine where you are today. Enjoy.

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Monte’,monte’,monte’! “Couch tater” hilariously honest, I can go in that mode sometimes too. I have an Eliptigo . No recumbent.. Finding drive to get up and go on it ,is the Holey grail.. motivation or drive to work out are hard to draw upon with out T.. My sweetheart walks both our dog and I daily. If I was left on my own I’d go off the deep end. My wife looks over me like a finatic .. great to have someone motivated to motivate me to live healthy. Hope springs eternal ..too...I Have no excuses...just a chemical imbalance for life.. who hoo , What a ride! Peace..

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I understand that your cats put in an urgent help call to the ASPCA.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 01/15/2019 2:36 PM EST

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Unfortunately Your doc is common . Most only stay within a limited scope of drugs ,RT,chemo.. if serious, find a naturalpathic onocologist.. I’ve followed mine for four years and believe in his knowledge..everybody says “do this “ don’t do that” how are we to know who to follow.. There are only 100 nat onco’s in the us. Mine Is Dr. Micheal Uzick of Genisis medicine in TUC. Az..... there are so many choices on line. It’s unlimited. Following my guys plan is part of my religion of hope... The one thing that we can control is what we put “IN” to our body.. Fresh turmeric, Garlic ,ginger...lycopene, zinc, melatonin,d-3,w/k-2, curcumin PhytoSome, hono pure,my favorite is Ahcc mushroom complex... all bent on fighting PC.. Good luck....

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Thank you. I agree with you. So many opinions online its hard to know what to believe

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One guy drank so much carrot juice that he turned orange and said he was cured... ( others might assasinate me upon hearing this) sugar is the enemy of all Cancer..... my personal belief ... each to his own. You will find your specific plan Eugman.. welcome to the club.. it’s a tuff way to make a living.. I had plans like the rest of us to cruise thru “The golden years” , I’m putting along like the turtle .. No more speed racer.. my roll has been slowed but I’m more in love with my wife and life than ever before.. APC will bring what’s important into focus... Good Luck..

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Rushed our infant son to ER when he turned orange. Sure it was going to be some kind of liver problem. Doctor said mix some of the green and other color baby foods with the orange food. We felt stupid, but relieved. Guess it happens a lot. Sure don't teach you in High School what you need to know about in life. Don't know if they ever changed that. Probably not. Cheers.

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First of all Greeting (I hate using the word welcome here). I hear this expression all the time and I hate it but I have to use it "IT IS WHAT IT IS". You are in the fight of your life now and Hormones will change you (physically and mentally). Weight gain in the belly, loss of muscle mass, urine voiding and all kids of mind changes. So we all wish you well and you should pay attention to all the gentlemen on this forum and you'll be around until your in your late 80's of early 90's.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 01/15/2019 2:34 PM EST

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I agree, a lot of great information from all. I am doing my best to soak it all in

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Many people have no reason for any disease so just figure its Life unfolding.

You have been a good steward of your body and that might help you.

The side effects from ADT are temporary so dont think its forever.

Your body will bounce back. PCa tends to a systemic disease so interventions buy a lot of time for other modalities to kick in.

ADT can mange PCa (Prostate Cancer) for a very long time.Try to get a homeopathic doctor on board or an aternative medicine doctor.

I was dxed 14 years ago PSA 4.7,GS 3+4 at 66 yrs old.

I did 150 mgs of Casodex daily ,5 mg daily and Zoladex once per month. I did this for 18 months. My PSA has been low all this time although now its creeping back to 4.7.

I havent done anything else but posting,reading,researching with friends on support groups. There is a ton of info out there and tremendous help from us and great doctors too.

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