This Blog has been an enormous support on my journey through PC. Every time I learn something from my doctors, or my own experances, I come check it out on the blog and it seems that most of you already know it. I'm amazed at your depth of knowledge. I have referred a couple of my friends to it who have come to me for support. I would appreciate your guidance at a critical stage in my treatment. At 65 my PSA went from 3 to 7.5. My doctor felt a bump and I had a biopsy. 4 of the 12 cores had Gleason 9 in 80, 90 or 100% of the sample. The rest were mostly 7s. Went to a renowned Cancer Center. Everyone seemed to agree and I did the 45 session radiation treatment along with ADT. I was on Lupron and a clinical trial of Appelutimde or a placebo. The treatment seemed very harsh to me. I began as a 6'4" - 210 lb Active Athlete at a competitive level. During the radiation, my colon was somehow damaged and I lost 55 lb of mostly muscle. The doctors all seemed in agreement that I should not try to put weight back on while on ADT, since it would not be muscle mass. The good news is that my PSA has stayed at zero. I am now completing 30 months of Lupron and I'm going on a Lupron vacation. I have managed to keep my weight under 170, but I am Skin and Bones and have no muscle mass. I managed to exercise pretty regularly for the first 24 months or so. I just couldn't seem to do it anymore at the end. With the loss of libido and ability to engage in regular athletic competitions, I am becoming depressed. Thanks to my family physician, I have managed to keep the plumbing working with a small daily dose of tadalafil and weekly sessions with my wife using sedilafel. If I had it to do over again, I would stop ADT after 18 months... No matter the consequences....But that is water under the bridge. I have no libido. I am weak. My joints hurt. I have lost quite a bit of bone density. I recognize that I am alive and that many people have it worse than me , but I am ready to grit my teeth, and do what it takes to get my life back as much as possible. Now my question is, where are the best places in the country to help me start a recovery program that will help me recover as much as possible from the effects of the ADT. My doctors still seem to be focused entirely on the cancer... Which I understand... But I have to know that my quality of life will improve to have incentive for the future. Can you give me some suggestions. Also...do you think I stand a chance to regain a reasonable QOL? Thank you for taking the time to consider this long-winded post. I appreciate all of you.
Post ADT Recovery Question: This Blog... - Advanced Prostate...
Post ADT Recovery Question
Yes, you most likely will. I am on intermittent therapy and don't like the ADT as well but do what we have to do. The half life of Lupron is 6 months so it takes some time to clear from your body but be patient. It will slowly wake up again. I am about your age and am currently on my 4th round of ADT. I take it till my PSA drops to a lower level and then go off of it till it rises . I usually have taken a shot about every two years, but the PSA rises more quickly as time passes. My last PSA was 127. Good luck!
Thank you. That is helpful and it is what I needed to hear. I feel better about my chances of recovery. My doctors have not been that encouraging. I am still searching though for a program that would be designed primarily to address testosterone recovery ... rather than just treatment of the prostate cancer. Do you know of any such program, or do you have any helpful tips. I would like to get ahead of the curve for once. I wish I would have known about the tadalafil and sildenafil stuff earlier in my treatment program.
I have been on Lupron 3 separate times over 8 years. The first was in parallel to radiation. The second was several years later when PSA rose to 4. The third was a year ago when my PSA shot from zero to 7 in 3 months. I know my psa will rise again. But my question is how much my PSA might rise after holiday? In a simplistic model it would return at 7 because the Lupron suppressed the growth. But I don't think that is realistic. What was your PSA before your last round of Lupron?
Mine was actually 127 before I took the last Lupron shot. I don't worry about the numbers as much as I do metastasis. I am still non metastatic. I have only taken 1 3 month shot 4 times over 13 years, starting as you did in conjunction with radiation. The Lupron will only work for so long, so I choose the intermittent therapy which allows me some qualitly of life. If the numbers don't go down enough this time, I might have to take a second shot. The PSA seems to grow quicker with time as I got by several years after first round, then it was about two years between shots, this time 1 year and 9 months. Good luck!!
It can take a while for testosterone levels to recover. It's a good idea to get it checked when you have your PSA tests.
Thank you. I needed to hear that. I am still curious though if there are programs that focus on the recovery from the treatment... As much as focus on the treatment itself. My doctors are not very encouraging about testosterone recovery., or even interested in that aspect.
You have to demonstrate that you are convincingly non-recurrent before anyone would ethically consider boosting your T levels.
That is exactly the kind of information that I need to hear and I have never been told that, in spite of my periodic questioning. Thank you.
BBallMan,
Your QOL will definitely improve. I started vacation earlier this year after 18 months of ADT. I was doing 3-month Lupron with Zytiga and Prednisone. I had hormone panel tests at three months and six months and things appear to be be normalizing... finally. It takes a while. That crap wrecks your body. Be patient!
I had muscle aches, continued anemia and fatigue, and a limp dick post ADT for several months. Still getting some aches, but feeling much more energetic, regaining muscle, and losing some of the fat layer. Working on the plumbing... but I had a radical prostatectomy followed by radiation after recurrence and then ADT so will never be the same again :-(.
I am 6'4" as well. 205 pounds and fit before diagnosis (played college sports and clubs after that). I worked out a lot during ADT. Lost muscle and gained some fat, but stayed at about 200 pounds. You gotta keep moving! That's worth repeating... keep exercising. You're an athlete. You know what to do. That will help you tolerate the treatments and recover from them in between. It will help your mood and make you look sexier for your wife :-).
All the best,
Josh
Good information. Wish I would have had them stop at 18 months. I am a little concerned that with my age, 30 months was a pretty long time. You are encouraging and that helps.
Well... some might argue that you are may be better off for having done the ADT longer. Perhaps more effective? Maybe get a longer vacation or durable remission? Like I said, it takes months to recover the testosterone so be patient... and there are natural ways to boost it (that others here might chime in on) if it does not come back right away.
Weight training was the answer for me. My MO said those who weight train do
Much better. So When I started Lupron and zytega, I hired one of those meathead trainers. I took off my shirt and told him I didn’t want to look worse than this after year with no testosterone. He told me if I looked like that after year in his gym he would close the door LOL. Since then I go three times a week for about an hour and a half. He works me like a dog. Not large weight amounts but 3 to 5 sets of 15 to 30 repetitions to exhaustion. I actually lost weight and gained muscle mass. There are others on the site who have done the same. If you don’t believe me, private message me and I’ll show you a before and after picture. Except for the lack of libido, some fatigue and minor stomach problems, I avoid any other side effects. Hit the weight room!
Schwah
I empathize with your situation, as do many others here. I was on triple blockade ADT for 18 months. (Lupron, Casodex and Avodart.) My RO made the decision to end ADT in light of my undetectable PSA and very low T. I had 47 RT sessions, the usual 37 to treat the prostate, a met on my hip, and pelvic surroundings, then brachytherapy, and three months later, 10 more RT sessions to pelvic lymph nodes. I was also given 2 meds in an off-label measure to protect pelvic organs during the first course of RT. Sorry, can't recall what they were. That's pretty aggressive treatment, but with a G8 Dx and one met to bone, I was looking for treatment with curative intent, which I was not offered in Canada. Hard to say whether your bowel issues were due to your RT , or your particular response to it. As you said, it's water under the bridge (and out your plumbing.)
I was offered Prolia, as protection against bone loss. I passed on that, since there is some risk of jaw necrosis. I've had a lot of dental work, and, as my RO said, my eastern European heritage seems to have gifted me with robust bones. My bone density has been OK.
Yes, weight training won't build muscle on ADT. My fatigue was so bad, post treatment, that I begged my clinic and this site for help. The answer, as you likely know, was weight training and aerobic exercise, as much as I could handle, and it helped a lot. My signal for getting to it was when I least felt like it. My RO also recommended creatine, .5 grams twice a day.
In your case, after 30 months on ADT, I can only imagine your QOL. Your body needs time to reset its endocrine functioning. As Tall_Allen said, you should get your Testosterone checked along with your PSA. ROs usually want you to include getting your bioavailable T checked. Maybe your thyroid function as well. In my case, both are still below normal, and I am reluctant to have any hormone replacements for either, given my high risk status.
Best Regards
Thank you for passing along that information. I get more insight and encouragement from this Blog than from my doctors. It is also helpful just to understand that my situation is very similar to many, many others and to hear How others have overcome the side effects. I need to get with an exercise program and get to work rebuilding my system. I appreciate your taking the time to respond and encourage.
BBallMan,
I feel your pain! I've posted before about feeling like the poster child for Lupron side effects. They were brutal for me (some men are very lucky and say no weight gain, hot flashes, etc. I'm envious as hell).
No libido. Poof, gone. Joint pain. Sudden and crushing fatigue. Wt gain - belly, butt and thighs, loss of muscle mass, higher BP and cholesterol levels, probable bone density issues, genital shrinkage, hot flashes every 2 hrs or more, and, to top them off, incredible roller coaster of emotions - depression, despair, crying spells (for no apparent reason), self image issues (who wants a fat 70 yr old with no interest in sex, small dick, no ability to ejaculate and for whom orgasm is doable but not very satisfying), and so on. Docs were sympathetic but basically I felt they were saying, "deal with it." I got more info from this site, online PC sites, and my own research.
Bottom lines: hopeful that, as Lupron dissipates, some wt will drop, some muscle mass will return, improvement in BP and emotions and return of libido - for whatever that's worth. Not so hopeful about genital shrinkage improving (btw, consider a pump to keep the parts useful).
What worked for me? Exercise. no gym rat here; more of a slug. But force myself to go 5-6x a wk. Machines and elliptical. Haven't seen any physical results but am hopeful. Exercie made me feel better about myself. Helped with emotional roller coaster. Also, trying OTC meds for sleep and fatigue and hot flashes. Try black cohosh tea for hot flashes. Try CBD gummies, oils, capsules for anxiety and join pain. Realize your emotions are at the mercy of the drug. Find a sympathetic ear. Rest when you need to.
Hang in there. It's a rough road and takes a LOT of time to recover. Be good to yourself.
EdinBaltimore
Wow don’t understand why they don’t want you to gain weight. 36 months on adt here, yes I have man boobs and all that but my oncologist is happy that I am carrying the extra 10 pounds, I have regained some muscle mass but not all. I pretty much do anything I want except sex 😢.
The greatest concern is CRPC. Which most often results after 18 months of that poison Lupron. I did 6 months in 2012 and would NEVER do it again. I have been able to maintain a steady PSA in the 3'same for 7 years with nutrition and PCSPES. All sexual function has returned. Intermittent therapy is the key. Let's just pray you don't develop CRPC.
Victory,
I' not the best informed---What is PCSPES? Thanks,
Mangeycritter
Its a natural supplement that works great with medicines. I've been using it for 5 years now. I give it all the credit in the world. I get mine from pcspes.net. The guy who is head CEO is a solid survivor and talks to you.
I have asked my doctors, shrink and Bc/Bs case managers the same question and haven’t really read an answer to your question yet here!!
ADT rode me hard and put me away wet! Physically, emotionally, spiritually and worst of all MENTALLY!!!! I appreciate the blog comments that say just exercise exercise exercise!! I was unstoppable prior to ADT. Working full time and my house and property was impeccable. Now.....not so much!!! The form of retardation that Eligard has left me with includes being sooooooo terribly lethargic that I can’t stand it!!!! I have always stayed as fit as possible (have plenty of dusty equipment in the man (right!!!!) cave), everything within acres of me, that I built with my two hands was well maintained and up to date!!! I was forced to retire after loosing my mind (and my job (and left unemployable)) while on ADT so I have plenty time and items on the honey do list, I have enough money to complete them too, but yet I sit there!!! I tell myself “get up and do this or that, even little things but I just sit there! I get so pissed off at my self and ashamed but........just sit there!!!! I see the disgust in my wife's face when she gets home from work and asks if I did anything today, I just sit there!!! I get up early and have breakfast with my wife every day and tell myself “don’t sit on that couch” but I just do anyway and just sit there!!! I’m on my second 6 month wait and see when the first in June showed I was still full blown ADT. With feeling absolutely no relief from the side effects (my list written by Steven King) I have little faith that the Eligard is out of my system thus, getting up and do stuff including some sort of self designed rehabilitation if I can get the will to do so!!!!
Best of luck
Jc
At my last visit I talked to my MO about resuming testosterone supplementation. He is not opposed and ordered a testosterone test. We will discuss at our Feb visit with a new PSA and 14 months Post-RT. TALK to your doc. See how you feel when the Luprone has worn off. His target is necessarily the cancer. Your target is and should be broader, having a life worth living. To me it is about more than survival.
With an ID BBallMan, Get a job as a Chippendale dancer... Kill many birds with one stone.....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 10/21/2019 6:50 PM DST
I can empathize. I have lost muscle strength, memory, cognitve ability. But it is better than the alternative. I am just finishing up my third round (this one lasted 12 months) The Dr. says I can have a holiday if my PSA is undetectable at the end of December. And like others once the PSA rises it will be back on Lupron.
I had 22 months of Lupron and then 2 months of Eligard for a total of 24 months. It took 6 months for testosterone to fully recover. Then at 18 months my psa doubled twice to 3.79 in 6 months.
However I am on Casodex and Proscar daily pills and have no negative side effects. Energy good and psa 0.49 after 2 months. Have been on this 5 months but no Testosterone tests.
On this course for 8 months then off with periodic psa testing. I asked for this course to avoid the lupron/eligard due to cost.
Positive side effects for me are weight loss and recovering hair growth. More hair on top feels warmer.
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