I have had prostate cancer for 16 years. Had RP in 2002, no clear margins, Gleason 6 - 8. Had radiation in 2003, psa undetectable until 2005. Psa slowly rising until finally to 4.0 in 2012. Started on intermittent Cassodex for 2 years. Positive metastatic scan in 2015 - 6 bone spots - continued Cassodex full time and psa today is 0.96 and no new metastatic spots.
Doctor is pushing to go on Lupron instead of Cassodex. Really do not want the Lupron side effects. Any thoughts or experiences would really be appreciated.
I don't have a lot of insights...but, I was given Casodex as neoadjuvant therapy in 2002, just before having RP in December. I think it did a heck of a job... though I did have hot flashes, loss of hair, muscle tissue, cracking voice...gynecomastia...I wonder that with your numbers being relatively "good," if you should change. The obvious place to come is here...I'm betting people here will help you solve this...
I've been on lupron now for 8 months. On a recommendation from my Dr, I lift weights with a trainer very hard theee times a week. I'm very diligent and work for well over an hour each time. Weight training, not aerobic exercise is the key. I actually feel great and have very little side affects if any.
How exactly does lifting heavy weights "help" a person suffering from prostate cancer who is taking drugs which are making that person feel fatigued and debilitated ?
Lupron removes all testosterone from your body. Without weight lifting and without testosterone your muscle mass breaks down, and you generally gain weight too, mostly fat. This results in great fatigue and often your bone density decreases too. Lifting weight keeps your muscle mass during lupron and if you work hard enough can actually increase it and weight lifting also helps increase bone density. It also is great for weight control as its proven that your metabolism stays in high gear for many hours after weight lifting. More so than aerobics. Weight lifting also increases energy in and of its self. Also proven good for the heart. Hope that helps give you no more excuses to not workout.
If your MO quotes those time frames he is either misinformed or being disingenuous. Lupron can work for a few months, not at all, or in some cases indefinitely. Perhaps he was quoting an average? I've been on it for 8 months along with zytega and will stay in a total of about 15 months. My MO says most studies show 12-15 months is the zone of best results with diminishing returns after 15 months. Recent studies have shown the combination of zytega and lupron in early metastasis to prolong life an average of 40%. Ask him why you aren't doing both along with prednisone. It's the standard of care now after these studies. My PSA was down to .05 60 days ago and still hopefully dropping. Just got back from the gym this morning with a trainer. He kills me and each time I swear will be my last. But I keep going back and I feel and look better than when I started. Funny story. When I started with this trainer I took my shirt off and told him my story and said his job was for me to look no worse in a year with zero testosterone in my body. He looked at me and said, "if you look like that in a year after working out with me, I'll close my gym". Lol.
Thanks for the detailed reply. I need to do some more asking/researching/fact finding on this exercise thingy. What I am really trying to figure out is what kind of exercise is optimum for me and how much of it is really needed/required. For example, if lifting weights is the way to go, then how much weight and for how long.
First off ,it will give you more energy when you excersize. Strength training counteracts osteoporosis of which we need to be aware. The best way to strengthen bones is By weight resistance training. This is commonly accepted as beneficial to lessen muscle loss also. I agree with you. We are fatigued and debilitated .. hard to muster up the drive to go to the gym to lift weights for a lot of us.. but those that do , rave of the benifits.. It doesn’t have to be heavy weights. Start with fly weights and breathing squats with no weights. #1 exersize squats.. isometrics, push ups yoga , gee gong, tai chi. ..anything to keep active.. The best is to have a trainer or a work out partner to push you to show up .. easy to say manana, manana, and manana never comes. We must be careful not to let lethargy turn into chronic fatigue syndrome.
I've read that resistance training does help with muscle atrophy... Are you working on bulk or maintenance through reps... not sure if one or the other is better.... I go to the gym at least 3 times a week and when the time comes for me to go on ADT I want to be prepared to maintain as much of what I have as I can...... Sounds like you have been pretty lucky with side effects.... I PRAY that I will be one of the ones spared the full range of possibly SE's
I actually do nothing but weight training for aBout an hour and 20 3 days a week. I do every muscle group with 3 to 5 sets to exhaustion at weights I can do 20 to 30 reps on. I have a trainer but if you can’t afford I’d hire one that specializes in weight training and have him set a program up for you. I really push hard for those extra few reps. I increase weight over time. My heart rate is at 120 plus the entire time. Each time I swear will be my last. Lol. Private message and I’ll send you before and after to show added muscle for sure. It can be done.
Thanks for the info.... I don't know how to private message on this group but if you DO ...please advise... I'll go to your profile and see if anything pops out.
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Dr Paraminder Singh at Mayo saved my ass.. prostate cancer specialist.. in Scottsdale... good luck..
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Thanks so much for the referral. I have been going to the Scottsdale Mayo. Not Dr. Singh however. I was assigned another Doctor there who seems to do a lot of different types of cancer and only says Lupron, Lupron, Lupron for PC. My current Doctor acts like he is insulted that I have been on Cassodex, successfully, for 4 years - not his Lupron recommendation.
Does Dr. Singh really focus on Prostate cancer? I had a great oncologist in Denver that just retired, who's attitude was treat the patient - not the scans. He was always very keen on my constant exercise, conditioning and diet. I would love to switch to Dr. Singh. Do you have mets? Please let me know the meds you are on now and your PSA?
How did he save your ASS? Sounds great!!!
Thank you so much.
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Mayo,is great. You’re in good hands. Let him be insulted.. JA ..Dr Singh had the plan to,shrink tumors blocking bladder and urethra , seeing that I had neauphrotstimy tubes and or internal stints for a year and a half. I’m on Tak -700 an adt drug plus I did Lupron , firmagon, eleguard until orchiectomy 9-16 . RT and adt got the tubes off. I’m happy to have skirted chemo for now. my uro was going to give me 6months of chemo. I felt lucky to only do RT. Best of luck to,all facing treatment decisions. Not an easy decision. Mayo,should have you covered. Dr. Sigh read the scans with more insight than a uro has. That how he saved me. Also a man of upper pc knowledge and great compassion also. Takes time to explain . None of that Big Dr. Big ego sh@@.. Peace.
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Thanks LuLu.
Hope you don't mind if I ask more questions. Best of luck in your journey. How long have you had PC? What year did you start Lupron?
Appreciate comments.
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Docs said that. I had this in me for years to get to the point I was at. Super bowl 2015 could not pee. Foley, kidney failure waiting for Dr to get back from spring break with his kids for biopsy . Didn’t make it.Friday the 13th dx #4 gl. 4+5..tubes out of back. Firmagon shot same day. They gave me 36 months. TG my expiration date has been extended. . Once pc tumors blocking urethra and bladder were eliminated by RT & adt. Two years now no Psa & no visible signs.. I’ve done a ton of homeopathic I v’s and nutrients , strictly adhered to whole food plant based diet with little animal proteins , no dairy, 90% organic. I am plagued by side effects but no big “c” chomping me at the moment. Still I’m not normal or like I was previously in any way except my beliefs and principals can’t be changed by Cancer. Everyday is gravy for me. I have bad days . Those are getting better with acceptance and gratitude of life. Also no more Lupron for me because of Orchiectomy 9-16, still on test drug adt that hopefully is stopping production of T from the adrenal gland.,I’m not a scientist or even scientific minded . Hope you too can beat this down at the start. That’s the best bet , I think. We live permanently altered if we are so lucky to live. For me no T is like I’ve been steamrolled or put thru the meat-grinder.. Then if you get spit out with good results after treatments then you will always deal with the no T syndrome.. I call it. Kepping financial solvent can help gravely. I lost that as of Dec. Happy to,be alive. Fight for your life .. You can adjust to just about anything if you have strong reasons to live.. There is no turning away from APC and no turning back once start treatments.. For me it was all or nothing . A Hail Mary in the final seconds of the game. Somebody threw me the pass and with God’s will somehow I’m stiil here. If I could come out of that scenario you should be able to do some good for yourself also. Keep cool ..
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Dr Singh IS a prostate cancer specialist. He’s an expert in this .. He told my onco what we were going to do . Quite different from the chemo the uro wanted. Also he was the one that got the stints out of me calling out that they were colonized with e-coli and various other infections. It was wearing me down 11/2 urs of heavy anti -biotics. I exhausted all of them , only one that still worked was Bactrim, narley side effects. Singh was the man to change directions when needed and told the low down what to do to my uro. My uro great surgeon followed Singh’s lead. I was fortunate to have him . Mayo says because I’m on the state ahccesswhich is Medicaid the
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That it’s illegal fo me to be seen at Mayo. That’s what they tell me at Mayo. Even as a self pay,not permittable in Az. Others on Medicare in other state go to other Mayo Clinic’s . But not for me in AZ. We’re low on the totem pole for education and public health issues. No more Sigh for me. My guy now is not a specialist. I’m happy and he’s happy that they don’t have to mess with me right now.. We pray this last forever, but no of us will be here forever. I’d like to give my new bride some “ good “ years without the terrible strife of the past 3.We met , I thought I was healthy wealthy and wise. From hero to zero overnight. That’s how I felt . That I’ve ruined her life now as well as my out. She didn’t deserve this. I did. I lived a life of self imposed stress always sweating the little stuff. Go, go ,going for the o mighty buck. That’s over. The good stuff in life is free. Air, if you can find clean air, love, friendship, beauty of nature . So keep loving yourself first then everything and everyone close to you. Think of great moments that can still await you ... Take care, ask questions, ask and you shall recieve blessings in all of this turmoil.
Thanks so much on Dr. Singh. Do you know if he is a PCA Oncologist?
Nalakrats says it is very important. I don't think my Mayo MO is.
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Ask for Sigh . Tell him William Jones fromTucson sent you. And I Am Well . He will not disappoint you. Why couldn’t you ask for a specialist at Mayo? Could make a difference as we read others stories here.
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Thanks so much William. Since there are only 3 MO at Mayo, we are al little concerned that the Dr. Singh will have to "take the company line" from the other Doctor. We will try it.
You are so gracious to share your experiences.
Hang in there and let's stay in touch.
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My privalige to do so. Our bodies can be whittled away..APC has taught me this. But it ain’t over til the fat lady sings!! And I love all women. Big girls are beauties too. A woman’s eyes and smile are the key to their hearts .I love the yin & yang. We , as humans have both sides male and female. Now it’s time to embrace your. Feminine side Brother.It ain’t all bad as long as you have love.. Don’t Dwell on this 24/7 . Enjoy this day.
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It’s a pretty good company line . He is a wonderful Doctor...anyone at Mayo is top notch .In my opinion.
Casodex stops working after a while. It can actually feed the androgen receptor instead of suppressing it. Lupron is much more powerful at suppressing the androgen receptor. You can take estrogen (with tamoxifen for the breasts - which you should have been taking with the casodex anyway) to lessen hot flashes. Exercise as much as possible to maintain lean body mass and increase alertness.
I did the Lupron and casodex at the same time, the Lupron does stop the cancer from spreading and I guess casodex shrinks it. but you have to be ready for the muscle loss, it is real, I am dealing with it and I can only be active for a little because of the weakness. I will start Rehab at the YMCA to build my muscles back up. I also had 40 treatments of radiation and my cancer is gone but I am practicing prevention now, because getting rid of the cancer tumor is only one part, the other is prevention , so my diet is veggies and fruit, Turmeric and mushrooms. apple cider vinegar, table spoon a day, 5 apricot seeds in the morning and 5 at night before bedtime. my psa has been .1 for the last two times, in 6 months, I was done with the radiation in Jan. and I quit the casodex, the Lupron was a 6 month shot, the sixth month was in Feb. they wanted me to do the lupron shot for 32 weeks, I think the side effects probably would done me in so I upt out of it.
Thank you Tceinvestments, I wanted to mention I read that the Lupron shot for 6 months can cause blood clots by 47%, which is the length of the shot I got, I wish I would have recieved the 3 month one instead, because the percentage of creating a blood clot is lessened to less then 10 %. last week I had to go to ER because I had pain in my left leg calf and ultrasound found a small blood clot but it was a surface one, not as serious as DVT. deep vein thrombosis . I am on Eliquis blood thinner now. It upsets me when they give the shot and the doctor not telling me about it, or to exercise so it wouldn't happen. I was so weak but if I knew about exercising I would have. no kind of protocol to go along with it . so please if you get the shot , start exercising right away before the weakness takes over. I read if you have a job sitting down for hours can cause blood clots so for every 45 minutes of sitting stand up for 15 minutes to keep the blood clots away and they can be more serious then the one I got. DVT is really really serious the blood clot can travel to the lung, heart or brain and death can occur. I lost a couple of friends like that , they didn't have prostate cancer but were heavy cigarette smokers, it is so wierd because one day they were alright the next day they were dead. very serious. I thought I was going to cross the veil too but the Lord was with me and now I am on blood thinners for a couple of months and soon to start physical therapy to build up my muscles, I can tell you taking the testosterone from my body has been the most difficult thing in my life, I feel like I am 90 years old. but I know it will be a slow process to get my strength back but I will , my cancer is in remission so the radiation and lupron shot worked but we have to exercise to reduce the risk of muscle loss and blood clots from happening, I hope this information will be read by someone starting on Lupron.
Hi, I had the exact same numbers as you when my C started in 2003 and when it flared up again in 2012, only mine was not Metastatic and my PSA was 129. My Oncologist put me on Esradot patches and within 3 months my PSA was down to 1,9 and has stayed down for 6 years. It is now 0.10 and there are no side effects from the hormone. For me it was the way to go, as I had tried all the other hormones with no success
, ask your Oncologist about the patches, they are simple to put on and do the job for this patient.
I have been on Lupron for several months and have had very little side effects. Very mild hot flashes and slight fatigue but nothing extreme. Prior I was on firmagon and had much more fatigue and bad hot flashes. Good luck.
That firmagon is powerful stuff and $$ costly. I started within then quickly changed to the Lupron. iIm sure a financial issue with insurance companies running stuff. Firm 10k for 3 month shot. No,more show for me now. No balls to crunch with castration . Addios to my juevos.... no going back on that one. The fun was over for those boys.
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10k per month = Firmagon .
Thanks so much. What is firmagon? How long were you on it? Do you have mets?
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Firmagon was my first shot A powerful and effective ADT drug that worked for me. 1 month shot then switched
I was on both from Nov. 2012 when I was diagnosed stage IV, G8, PSA 19. When we arrived in FL from AZ in 2016 my new urologist dropped the Casodex and I receive only a six month shot of Lupron. The only side effect that bothers me is the persistent 20 lb. weight gain which is a challenge to lose. I am a vegan and I could do better at reducing my caloric intake. I am committed to losing it by July when I see my PCP for a six month checkup.
My PSA has been trending lower for the last two years and is now 0.06. I attribute the PSA number in part to the natural supplements I use. I have posted my list of supplements at this website. If you can't locate it and are interested let me know.
My FL urologist thinks I am eccentric when it comes to my extensive list of natural supplements. We went to the same grad school so he indulges me. He attributes everything good to Lupron.
A medical oncologist I met with in 2017 at a major cancer center in FL found me an uninteresting patient and told me to come back when I am resistant. He is very impressed by my Lupron results after 5 years.
Thanks so much for your info. I am also very disciplined on my diet. I would be very interested in your natural suppliments. Who was your MO in Arizona. That is where we live now and not a fan of my MO.
Hope you don't mind if "lurk" on this question.....your general situation is similar to my husband's: RP 2001, salvage radiation 2003, several clinical trials, including an anti-CTLA4 in which he was an exceptional responder (i.e., he and one or two others had a good response)
and he was started on Lupron in Dec. 2014 (bone metastases in at least one dangerous location) but they have added Casodex since then when the PSA was rising, so now he is on both Lupron and Casodex.....
he has started to exercise....and has been told for years that he should....
cancer doctors unconvinced that it is related to his treatment, but he did suffer a deep vein thrombosis in one of his legs last fall and was on an injectable blood thinner for months and is now on an oral twice daily blood thinner......I know there are studies about the effects of ADT on the cardiovascular system......so, I worry, but I don't have any advice to add, but I am interested in your situation b/c it mirrors my husband's....
.
thanks for posting this question.....I think that every man is a ONE MAN clinical trial.....
Agreed on the trial. I believe diet, exercise and prayer, along with a supportive wife, are my keys to life this far. Just don't want to make a mistake in some weird "trial" for sciences sake.
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You won’t.. you’ve got the holey tri-fecta.. ; #1 faith in a higher power ,#2 a loving spouses support, #3 (diet &exersize) ... Live well , enjoy the little stuff. Life is not over for you .. by any means..
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Thanks so much.
Your strength is amazing.
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Just dumb luck Amigo. Resolve to endure what we must to feel the good things that this earth has to offer even to,those with APC . We’re not exempt of happiness or joy . We take it with our meds and treatments. So we have more days under the sun.
I was on Lupron for two year. PSA continued to climb. Now on Etandi and have my life again. FDA and most insurance want you to first fail on Lupron even though they know it’s an out dated drug. Prepare to feel crummy every day and exhausted. You lose motivation and joy. Shitty drug—-at least for me.
Hi Stelle,shitty drug explains it perfectly i think. My mo wants me back on it but after a near accident while driving i will not have it. Cosudex is bad enough beign chemicly castrated as he proudly announced one day but i owe it to my family to at least stay awake while driving.
4 1/2 years postdignosis. Prostatectomy and year later started Lupron. PSA continued to rise. Elected orchiectomy. PSA fell but started to rise. Put on Casodex. PSA continued to rise to 14. Since I had failed both put on Xtandy. PSA fell to 1.8. Second month down to .36. In my fourth month with fingers crossed. Lupron and Casodex made me feel crummy and exhausted. NO side effects on Xtandy. Miracle drug for me. FDA approved three years ago before having to move to chemo. Good Luck brother.
Xtandy. Wonder drug for me. FDA approved as second line drug nearly three years ago.
Thanks - what is Neuroendrocrine Pca?
What is MO?
Sorry to ask questions I should know.
I found a medical oncologist at the Mayo Clinic. He has been pushing me toward Lupron for the last 3 years. I just wonder if there's anything else I can take other than the casodex or with the casodex other than the Lupron. Is there a way to test for the Nero Doctrine cells,
Thank you
Thanks so much for the info. Do you have PC?
What is your condition?
So how long do you stay on Lupron - is that ADT?
Do you take anything else with it?
I really appreciate your insight.
How long have you had PC?
Nalakrats, dx 3-15 for me but in my case the Docs said PC had been ripping thru me for many years. Some only get stopped when near death. Like myself. I’m listening to my body now. Ego, I’m ok, I’m ok, ooops I’m f######! I was in Cabo 3 months self injecting myself with what I thought was the fountain of youth. HGH. My thinking is that’s what exposed my prostate.. I was my own Doctor. Dumbass..
I did not have a medical oncologist in AZ. I really can't claim one here in FL as he reviewed my health status, the scan and mri results, and my hormone therapy history. As I said, he found me uninteresting as I did not seem a candidate for any major change in therapy. My PSA was low and I had only one confirmed met on my left pelvic node. I probably will not go back to that cancer center when I am resistant. But that involves matters not relevant here.
You were interested in my natural supplements, so here is my story:
In 2015, I made some changes after 3 years in my attitude toward being a stage 4 PCa patient. My wife told me I needed to start doing something about this death sentence. Start doing research ("you're good at research, why aren't you finding something that can stop this cancer")! I laughed and started researching the medical literature for a complementary medicine treatment. I chose Dr. AKM Shamsuddin's text "IP6 and Inositol... (go to Amazon) and the IP6 powder he reports on in his book. I take 12 scoops of powder in divided doses daily. Yes, that is a massive dose. I take it by itself on an empty stomach mixed in water vigorously. I never mix it with any any liquid because IP6 will bind to protein molecules.
I also use Dr. Vaclav Vetvicka's book (Beta Glucan: Nature's Secret") and the Transfer Point company's Beta 1,3-D Glucan (#300) based on Dr. Vetvicka's reseaarch into beta glucan efficacy across brands.
I take 3 500mg. capsules daily on an empty stomach with resveratrol and vitamin C per Dr. Vetvicka's protocol. Nature's Answer has a resveratrol that combines vitamin C, quercetin, and a proprietary polyphenol blend.
These are my two major supplements. Not long after starting this combined regimen my Lupron side effects lessened and I have hardly noticed anything since 2016.
I now also take capsaicin (cayenne pepper) combined with naturally sourced lycopene (from V8 juice, tomato soup, pasta sauce, etc. I take curcumin-turmeric, berberine (natural molecule from a root that is emulated in prescription drug Metformin for type 2 diabetics, grape seed extract, baby aspirin, red yeast rice with co-q-10 (statin drugs started with Lovastatin's emulation of red yeast) and, very importantly, European milk thistle with Isosylybin A and Isosylybin B. These have been added in such a way that I can not talk about individual performance
and causality.
More detail available about dosages, etc. Just let me know. By the way, pubmed.gov is a good source of cancer research on all the supplements I take.
Tce...I was in your situation 5 months ago. After stopping Lupron and Zytiga one year ago..my PSA started rising from 0.2 to 3.1. My Onco wanted me to go back on Lupron and Zytiga immediately. I decided that I will not do that. I have some resouces to obtain Casodex and Finasteride and any way got these meds and increased my vigilance and monitoring with one dozen biomarkers every 2 weeks and CT and MRI every 2 months. My PSA went back down to 0.2 and last week my Onco was pleased and told " proof is in the pudding and continue what you are doing because it is working. So I am on Casodex 50 mg a day with Finasteride 5 mg a day for last 5 months. I feel like I used to feel 2 years before my diagnosis. Every morning I pray to Almighty to let this combo of med continue working for years.I got scary posts from TA and almost abusive private messages from NoLameName calling me names when I mentioned about my plan to use casodex and Finasteride. I also increased my anticancer diet...dozens of dietary interventions and continued my 5 miles a day brisk walk
Its not for faint hearted to go against the crowd.... But if you have solid knowledge and resources to monitor your PCa every two weeks..it can be done. Keep an open mind and if you need to change course based on detailed data..stay ready to do that.
Tomorrow I have my next set of monitoring labs (total 60 blood tests) marking end of 2020.
Yes, it is expensive ..insurance does not cover these BUT I work 1 or 2 days extra to get my $1000 per month..testing bill.
And by the way...the stock TEX has gone from $ 16 to $34...thank God for giving me some extra change for my 2021 lab tests and scans. Believe in your knowledge and judgement..do not be scared by scarecrows..We assume resposibility for our actions and accept outcome whatever it may be. Best wishes ..tceinvestment...Now give me a stock tip !!!
One last point..Get germline testing from Color.com it costs only 150 or so dollars, I did..My result came in 2 weeks showing "No Mutations" Peace of mind.
Thanks so much learn all.I've been in this battle for 18 years and was told I was going to die 15 years ago so my answer to the quote experts is mostly screw them. Cassidex only works for me for 4 years and all I got was bigger boobs and my PSA stayed low. It is very frustrating that my PSA is now decided to take off because it is never been this high in my 18 years and my frustration is that now that I'm on multiple ADT it doesn't seem to be working. So many of you have been so helpful because our multiple experiences can certainly help all of us relate to our individual circumstances. I believe God Almighty is the only reason I'm here and I'm trying to be the best person I can everyday.
tce..Knock down the PSA from all these heavy duty weapons ..get it to 0.2 and that will give you time to ponder what better options can be tried later. I would call your new treatment as "emergency intervention" (hopefully not permanent)
Casodex may work again IF niclosamide is added to it...but Niclosamide is not available in USA.
Thanks so much learn all I just need to get it knocked down as soon as possible. I feel like a million bucks lift weights three times a week and walk four days a week and play golf two days a week. life is good but I just need to address the problem and try to get it fixed as best it can.God bless you
You are doing a lot of things right.. My intuition is that this is just a bump in the road..You will be back on track in a few weeks. Just enjoy falling PSA !
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My Dady's Prostate Cancer
My brother has advanced prostate cancer
Cassodex OR Zytiga????
Next Step - Rising PSA
