I was diagnosed with Stage 4 Prostate Cancer right before my 55 birthday. I was diagnosed in Sep. 2015. My PSA was 206 and my Gleason score was 9. 11 of 12 Biopsy cores were positive. The PC was also listed as metastatic in my hips. I have switched my original Oncologist in Tulsa OK to another in Milwaukee as I was not happy talking to a DR. that could not talk to me or explain questions I had, (So I fired him and went looking for a 2nd opinion and am happy at this time with my 2nd OC).
I was active and ate a fairly good diet before the prognosis, and since the diagnosis I have eliminated all Red meat, Dairy, fried foods, and anything process or GMO. I was already gluten intolerant, so breads and anything with gluten is not on in my diet.
I do eat certain types of baked fish (Sardines, Salmon, Tuna, and shrimp) all Wild caught and nothing farmed.
Veggies and fruits are my core diet along with various nuts and legumes.
I try to get and walk daily and I do some yoga too. I need to do more in terms of exercise for sure.
I take Trelstar injections (once every three months) and no casodex (Due to Liver count issues).
I do take supplements daily, Vit D3 (35K IUs), Turmeric, Turkey Tail, Garlic, Multi Vit, Vit C, Mag Citrate, Flax Seed oil.
After going through my initial injection of Fermigon, and then being placed on Lupron injections every 3 mos. I asked to be switched to another Hormone (Trelstar), this was due funky side effects I was experiencing (Joint and muscles issues).
My PSA score presently is 0.1 and I am managing the normal issues most everyone experiences. After almost 20 mos since being diagnosed I have given up some things that I used to stay busy with and now I focus on staying busy with working outside around house and walking as much as I can.
Since starting this journey, I have managed to get the metastatic cancer from my hips, and I feel good for the most part and the drugs are my biggest issue, due to fatigue and muscle degradation and joint pain. I'm at a cross-road as I am considering stopping treatment, and am going to talk to my OC at my next appointment.
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CoachPTK
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I have gone through many moments of reflection and thoughts, and I truly believe in my health holistically. I agree shutting down my pituitary gland and testosterone have been a great thing as the cancer cells are shut down from the source. I struggle with the limits all cancer patients face (as I lost my mom in April to a 7 year battle with breast cancer) and I think clinical trials are a great thing but this is also big business and I wonder if everyone is truly fighting the same cause.
In my mom's last couple of years I know she was more worried about me than for herself. She had opted out of chemo, and accepted her fate and just wanted to be out of pain. That is what really hurts the most, is seeing her in all the pain and for the last year she was ready to go home to God.
I miss my mom every day and I know she is helping me be positive and looking forward to each day. I am not sure what drew me to this site, but I know one thing for sure, I/we are not alone and know we owe it to ourselves to take the best care we can to beat this jacked up disease.
I look forward to learning the good and the bad of prostate cancer and support my brothers on this planet to fight the good fight.
Thanks coach , for sharing about your mom. The greatest generation was a tuff breed, as my father was, stoic with out complaint.This is a great site. Very knowledgeable and wise regular participants, that speak from being there.I was told that it's rare to see such an advanced disease at my early age of 54, but I've seen many on this site..Basically we are all going thru same things ..Try broccoli sprouts.. Recommended by a respected Dr that I know.Grow your own in a jar every 4 days.. Stay positive!
You have had a good response to 1st line ADT, taking a PSA of 206 down to 0.1. If I were in your shoes, I would be getting PSA tests monthly and graphing the trends. Statistically, you might be right around the time when "resistance" to initial ADT sometimes sets in, and in a perfect time to be discussing "next steps" and next "treatment options", rather than considering just stopping treatment. Ask your doctor, "What are my next treatment options? And, what can I/we do to learn about, consider, prepare for, and get ready to make a decision about those options?"
As to the previously documented "mets" in your hips, what scan(s) were used for their initial diagnosis? And, what scan(s)/reports have since led you to say, "... I have managed to get the metastatic cancer from my hips..."? You might want to ask about that, too. Just because a scan may show "No Evidence of Disease (NED)" does not always mean that there may be residual cancer cells in those locations, or elsewhere, beneath the resolution of the scan, that can still relapse, particularly if the main treatment is stopped abruptly.
You are still a young, strong man, with excellent habits, diet, and exercise going for you. All of those bode well for mitigating the side effects of treatments, like fatigue. You are still in the Game.
From my own personal experience at age 68 of 3 1/2 years on Lupron, and more recently 6 months of added Xtandi, I can attest that it is not always easy to feel and accept my changing emotions and physical limitations. It sucked when I ran out of gas on a 6 mile hike at altitude a couple of years ago in Yellowstone National Park. It sucked when I started having to take 10-15 minute breaks to rest and let hot flashes subside on hot days when I was doing something simple like mowing the lawns. Grieving for who we were, and what we may no longer be able to do, is a completely normal part of our cancer journey. It's good for us to live with those feelings for a while, and come to terms with them, and find some kind of acceptance for ourselves, as we learn to ask others for help and compassion as we experience our bodily and emotional changes.
I am reminded of the evolution of movie characters played by Clint Eastwood over the years:
Charles, Thank you for your input and perception from someone living with this ugly disease. I believe I can still beat beat this distraction and at the same time coming to terms with my mortality. Being an athlete for most of my life (starting with having to out-run my older brothers from pummeling me, to football, baseball, Soccer, basketball, and then Triathlons and coaching soccer for 18 years), I know my body has seen it's punishment, but I am far from over Living my life. I don't necessarily want to stop treatment, but the Trelstar and prior Lupron injections just kick my rear-end. The joint pain in the morning is the worst part as well as sitting for more than 30 mins at a time make my legs feel real old. Truthfully, this is the main reason I would stop treatment. Not that I/m going to, but it sure makes me wonder.
As far as PSA tests, I have them about ever other month and there is really not much change from 0.01 to 0.1. I would love to have an MRI with a ultra-sound or sonogram to get a better image of my prostate with the nuclear cocktail running through my body.
Having read so many posts on this site, and reading the issues we all share is somewhat a relief and at the same time a sad cry we are living with fractured lives, and families that are in the web of cancer.
On the positive side, I am learning a lot from the experiences other men have dealt with and it opens my mind more to options I may have, short and long term.
I truly hope and pray God will bring new treatments and insight to how we can live a healthy and normal life. I have 3 children I want to see have their families after they finish college and a wife that is in it for the long haul. Sometimes, this is all that keeps me moving forward.
For me, there are many reasons to live and no reason to die, so I will do my best to beat this ugly enemy and Live for me and my family .
You have strong reasons to live a long life.We can do the best in taking care of ourselves but as this experience shows us that we are actually not in control of anything such as life or death or our fate..We've been dealt the P. C. Card but the the games not over for us by any means..I was told initially that I will not live to be and old man ( age of 80) and that I will Die from P. C. If I had refused treatments They said I would have been gone by now.Had no choice, I wanted to live. now we are left with our chemistry permanently altered. I'm always aware of the gorilla in the room even if now he's currently for me resting and taking a siesta. Beyond that, i relate to you. Keep up your guard and live long...
You have said it for all of us : "For me , there are many reasons to live and no reason to die so I will do my best, to beat this ugly enemy and live for me and my family". This is exactly what you have to do. Please continue with the best treatments available for your specific case by making the right decisions at the right time with all available resources. Even up to now, I see you have done many things to manage your disease intelligently.
Keep us posted regularly about your progress. We are always there with you.
May all good things in the world protect you for your beloved children, wife and all loved ones!
You might also consider that this disease is unique to each person. What works for one may not work for another. Diet may be of great benefit for you and for another have no measurable affect. Anything you can do to feel better and live your life should be explored. Once cells have metasticized, the ball game is different. Since you are a believer as I am, I take comfort that as long as I wake up God has something for me to do. I definitely would not stop treatment but explore what happens if things head south again. Yes clinical trials are a monetary benefit, but making new medications costs tremendous money to formulate and test. I am happy to see big money made if a new treatment provides success. Keep praying, keep playing and trust in God's plan for he also gifted researchers and physicians to do what they do to combat cancer. Be blessed!
In terms of your listed diet, looks good except flaxseed jumps out-Dr Snuffy Myers took me off flaxseed immediately said"like gasoline on fire for Pca ", he wrote some medical monograph on it. Forgot why, but he said don't eat tuna-rest looks good-olive oil should be your only oil.. so no Chinese, Thai , etc-bad fats -don't eat cholesterol, if no low cholesterol/triglycerides labs , then use Crestor
With your history including g9 stage4 and your good response not sure why stopping treatment is a good idea.?
Hang in there! You likely have many years left to live. Don't quit treatment. I was diagnosed Gleason 8 in 1999 at age 55 with two kids in college. I am now 73 and lived to see my kids graduate college, marry, the birth of 4 grand kids,now aged 5-10, and still finding much enjoyment in life. There have been some tough times but the good far outweighs the bad. Treat the cancer as necessary, but let living life to the fullest be your focus! A summary of my cancer treatments over the last 18 years is in my profile if you're interested.
Sir I was diagnosed last year non with same Gleason score of 8 and my age is 54yrs. I am very impressed with your cancer management. Can you please send the entire treatment profile.
You should stop the flaxseed oil immediately (IMO). The alpha linolenic acid [ALA], in spite of being an omega-3, is associated with aggressive PCa. More so in men with low intake of linoleic acid, the omega-6 found in vegetable oils. Ironic - & I took the stuff too until diagnosis.
By all means use flaxseed hulls, which have no ALA. The lignans are probably helpful.
You mention "Vit D3 (35K IUs)". 35,000 IUs daily is a huge maintenance dose. You should have blood levels tested. Many men opt for a target ~70 ng/dL & require 4,000-7,000 IUs - nothing like 35,000 IUs.
Super-high doses over several months can elevated calcium levels (hypervitiminosis D). Calcium is also associated with aggressive disease. Vitamin K is needed for calcium transport from blood to bone. K2 is best because it has a longer half-life. K2 (K2-7) is also associated with Pca protection. K2 will keep arteries clear of calcium deposits - & even remove deposits.
You mention a "Multi Vit". I'm against, both, multi-vitamins & multi-minerals. Some things help the cancer. Also, the forms found in multi supplements may not be desirable. e.g., for vitamin E, alpha-tocopheral is potentially dangerous, since it can drive down gamma-tocopherol. & tocotrienols are better than tocopherols anyway.
I have a good number of posts with titles that begin: "Foods/Supplements-Vitamins:". You might be interested, based on what you have written.
Just to chime in, I would not stop treatment. I had my biopsy in 2011, and all 6 cores were positive with grades of 7, 8, and 9. I had a RP in Jan 2012, my PSA was 6.2. Post RP, it went to 1.9, and they put me on Eligard immediately as all my margins were bad, my seminal vesicles, sex nerves (half were removed), and lymph nodes were all positive. I had a consult with the head RO, and he said radiation would not help. (Things have changed - radiation with and RP in a case like mine is now pretty standard.)
After about a year, my urological onc suggested a vacation. I said ok, and it did not go well. After 4 months, I was at 2.3. After 8 months I had a PSA of 10.2. My hematology oncologist (I have some nasty anemia) saw that number and went semi-ballistic. He put me in for scans the next working day. They found mets in 4 lymph nodes. I went on Trelstar, and went back to the side effects that we all seem to have on ADT.
My PSA dropped to undetectable. It has stayed there for almost 4 years. It has been about 5.5 years since my RP. The only med I take is my 6 month shot of Trelstar, and a 6 month shot of Prolia for bone strength. (You should talk to you ONC about Prolia.) I had my latest checkup with onc 2 days ago. He bascially is a stay the course guy. For now that is fine.
I have modified my diet some, dropping some of the really bad stuff, cutting back on other bad stuff. Reading here, I have added capsaicin, lycopene, and simvastatin. I get some exercise, but fatigue very easily, and am often very tired. (Who woulda thunk it - someone with chronic anemia and stage 4 cancer and on Trelstar gets tired!!)
So how do I get through this? Well, for me, right now at least, I am not afraid of dying. I don't want to, but I know it is unavoidable and being afraid of it does me no good. I do exercise. I talk with my wife. I talk with my urologist. But very importantly I do what my first ONC told me, and do what I really like to do. Maybe I can't do them as long or a well as I used to be able to, but I can still do them and enjoy them. If you have a passion, do it! If you have hobbies, do them! If you like helping people, do that! Love your family. Enjoy what you do, Do what you enjoy. Make joy for others, and they will make it for you.
I do NOT recommend stopping treatment. From the tenor of your post, you sound as though you need someone you can talk with about this PCA beast. Maybe a therapist or a clergyman? And enjoy life! Don't fret what can't be fixed. And remember, according to the latest USA stats, 5 year survivorship is not 100% for men diagnosed with PC, 98% at 7 years, and 95% at 10 years. (Of course, that includes all levels of PC, not just the APC we all share.) There are so many men here with long histories of fighting the beast. Yes, eventually we all die, but there is still a LOT of time to go out and wrassle with alligators and snapping turtles and all that stuff. Enjoy your life!!
Marshall, for those of us who may not be as brave as you, what do think allows you to not be afraid of death.? That is, allowing the reality that that fear may not be helpful , to truly be your guide, assuming you don't avoid doing what makes sense, which you do by following your treatment protocols.
I do not know what makes me feel unafraid to die. I am very analytical in my approach to life, and that may have a lot to do with it. I look at things as pragmatically as I can. When I had my biopsy and it came back ugly despite low PSA, my urologist just said "It is what it is." I sort of took that to heart. It is also a bit like the serenity prayer. I try not to fret about things I have not control over, and I know in the long run I have none over death. I can postpone it, and I will to the best of my ability without sacrificing my enjoyment of life. I look for things I can enjoy. I do not stress over the PCa. All of my relatives and in-laws of my parents generation are dead. I just accept it. I have seen cousins and nieces die. I think accepting what is real that cannot be changed is what lets me be unafraid to die. I have come close to death several times: disease, car accidents, caught in rip tides, etc. For whatever reason I never freaked. I just watched in a detached manner and said to myself what my oncologist and urologist would tell me - it is what it is.
All of that rambling said, I do fear unremitting pain. Death would be welcome at that point (I think.) Dying is part of life. And I am curious - what is on the other side? So anyway, I look for the bright side as much as I can. I see nothing to gain by fear.
Now, time for me to go get ready for some fun with my family. A casual dinner with my wife, niece, and her husband with good food and really good beer in my half finished man-cave. Screw you, PCa!!!
Your "serenity prayer " is perfect, with its focus on on what you can control and take one day at a time, etc. Your uro statement "it's what it is"; analogous to my med-onco telling me " your PSA will be be what it will be.".
I am also very analytical and have lost all my family, except wife, children and grandchildren .
My problem is going from believing it to internalizing it-that critical leap of faith or emotionally accepting it.
Thanks for reminding me and providing a good model for these critical existential issues.
I was 54 , # 4 met in bladder urethra, 2 lymph nodes. 2yrs ago .like you 1st firmagon then lupron until 9-17 orchiectomy.For last yr no -signs.All the Nat. Stuff is good that you are doing..I do similar good foods. Our lot is to attempt to maintain some strength and our sanity while in hormonal flux.
Your closing sentence is essentially what I told my Oncologist team (my NHS hospital has used me for 6 Oncologists) under one lead. They said my fight against this cancer was going very well. I reminded them of my decision not to fight this cancer but to learn how to live with it. My job and the job of all of us who accept treatment is to keep my body and brain in good health and to present myself as the battlefield. Let the drugs and treatments fight inside me as I try not to mess myself up. God Bless all of us and those who help us, live with us, tolerate our bad or sad times and continue to love us. David
Having love every day, even on the worst day, that's priceless. Our bodies are fighting theirselves in cellular war fair .Please have peace and confidence in you decisions.We are blessed when we have someone to love.
was diagnosed oct 2009, Gleason 6, upgraded to 4+3 after surgery Jan 2010. Rise psa after surgery, then went to Dr Snuffy Myers aug 2010, been with him since, his retirement nov1st, means must find replacement
. He started me 1 avodart 2012 with another rise psa, then added metformin, increased avodart. Then 2015 he tried what he called casodex lite, low dose 6 months, as psa wasn't that hi but he was concerned (this was prob a mistake) but up, this failed, started xtandi mid fed 2016, went undetectable since then, but we know resistance will form at some unknown time in future, perhaps via ArV7,
took 2 Caris lab genetic tests, showed methylated silenced PTEN and unusual ERBB2 mutation.
Been on quarterly guardant 360 blood draw genetic tests.
As mentioned previously, would like to know how your CTC test goes, wonder how compares to guardant 360.
The alligator question is more general, as to under what conditions do you believe it's something to think about and realistically how does someone who doesn't have proper fish/hunt experience get this? The way some others respond re: alligator issue, sometimes seems like they are joking-so sounded at first like inside joke. Web talks about the blood very potent against bacteria and viruses, saw report some in Mexico bleeding them to death to get it. Not sure any clinical trials re this.
Your responses are informative, shows deep knowledge and and caring
Hi Nalakrats, my husband had aggressive prostate cancer with high Gleason score of 9 and staging T4 N1 M1. His mother aged 95 is now being investigated for Vulval/vaginal cancer do you think there is a link and should I get our children gene tested for BRCA markers.
Guess then, this count via CTC will , if I understand you, to allow probabilistic projection of PSA neg/refractory Pca , which perhaps the guardand360 test isn't designed to do, as it's focused on mutations, "identifies all actionable somatic genomic targets"
Thanks for your reply, my husband died 3 years after diagnosis having been treated with hormone Zolodex. They did try Xtandi acouple of months before he died but it made him really ill. It was a non secreting PSA cancer and I think when it was dx he was too compomised as he was on warfarin for Factor5 Lieden gene so we had 2 good years before things went south.
I will see what is said on Weds at Mother in Laws consultation with Gynae dept.
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live with prostate cancer 
Losing the love of my life 
Using Trelstar alone after using zytiga
My father diagnosed with Advanced prostate cancer
