Rebuilding muscle mass post-Lupron

Posted by cbinvt @cbinvt, Jan 7, 2023

I was on Lupron for 12 months and received my last six-month shot in June 2022. I underwent proton radiation treatment in March/April 2022. My PSA dropped from 45 pre-Lupron and radiation to undetectable in November 2022.

With my doctor's agreement, I did not receive another Lupron shot in December 2022 because I wanted to build up muscle mass for a long-planned four-day hike to Machu Picchu in May 2023.

I continued daily exercises and hikes throughout my treatment, but I am conscious that my strength and endurance have dropped significantly. I'm currently working with a personal trainer, but I still feel much less strength on long uphill sections of my daily hike. I'm really concerned that I may not have the leg strength to complete my fairly demanding four-day hike in May.

I'd love to hear others' advice on how long it takes to rebuild muscle mass after the effects of Lupron have moved out of the system.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@roger52

As a 71 yo recently retired Family Medicine physician, I was diagnosed in February with Gleason 7-3+4, prostate cancer with 1 core positive of 12 and was only seen on one side of the prostate on MRI, even though it can be microscopically multifocal. After evaluating all of my options, I chose Proton Therapy and received 30 treatments equaling 72Gy of radiation. My radiation oncologist was extremely knowledgeable since he was the first at using PT at M D Anderson in 2006. They were fifth in the US in its use. He asked if I wanted hormone therapy and I replied only if absolutely indicated so we delayed until my tissue was sent for genomic evaluation. I was discovered to have high risk cells. The results were available after about 2/3 of my PT, so I began Leuprolide (22.5mg x2) and bicalutamide (50mg orally daily for 60 days). I have completed the oral treatment and now anticipating a second Leuprolide in about 2 weeks. My first post treatment labs show the testosterone diving from 711 (upper limits of normal) to 8 (way below lower limits of normal on a different scale), and PSA from peak of 4.9 to < .o6. I have been an active runner since 1987. I recently experienced an overwhelming fatigue, weakness, muscle aches, and of course, poor sleep. I chose PT in order to maintain a good quality of life with as successful a cure rate at radical prostatectomy and external beam photon radiation therapy with dramatically less side effects. The ADT has complicated that and I am in a dilemma regarding taking the second Leuprolide. I think the studies are still in progress and not to be reported for another 2-3 years about the conclusive value of the adjuvant ADT for someone in my intermediate risk category.
Everyone is different and I am Blessed to have discovered my cancer early. The science is not absolute. My life has been Blessed beyond measure. I want to be active until I cannot and I am not certain about the return of my strength and endurance at 72, soon. I post this mainly to show that we are all a bit different and must make our own decisions. God Bless all of you! I pray that your suffering is as minimal as possible. Thanks for the time. rog

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Diagnosed with Prostate cancer in 2004 , age 54, PSA 9.5, had Robotic surgery and 36 radiation treatments. Surgery (showed seminal vesicle spread but not lymph system and) left me impotent. No detectable PSA for 6 years. Had periodic Lupron / Eligard shots from 2010 to 2020. Since then had two PSMA scans, no tumor visible, with intent to use salvage radiation to zap tumor.
As there seems to be no track history for when energy comes back after shots (mine hasn't) I remain hopeful of putting shots off as long as I can!

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@redroadtraveler

I have had stage IV prostate cancer for about three years now. My early treatment included the lupron on the theory that high testosterone fed the growth of cancer cells. I have been off the lupron for about a year and a half. Doctor wanted me to go back on it recently as psa began to rise significantly and my testosterone was high. I was not convinced of the inevitable relationship between high testosterone and rising psa so I declined, at least until more time had passed. If my psa continued to rise significantly I told him I would go back on the lupron. What happened was my testosterone increased significantly while my psa dropped significantly. I am not back on the lupron.

I, too, exercise regularly in the attempt to regain muscle mass, strength, and stamina. I generally don't feel too bad, but in spite of my regular exercise my strength and stamina is not coming back. I only have seen marginal improvement.

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To what do you attribute getting your testosterone high, post-Lupron treatments?

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@johnbartz

To what do you attribute getting your testosterone high, post-Lupron treatments?

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Don't know. I am hoping that my testosterone is getting back to "normal" after ceasing the Lupron treatments. All I really know is that for me, my body does not adhere to the allopathic theory that high testosterone equals high PSA. Perhaps the changes in diet and exercise are having a positive effect.

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@redroadtraveler

Don't know. I am hoping that my testosterone is getting back to "normal" after ceasing the Lupron treatments. All I really know is that for me, my body does not adhere to the allopathic theory that high testosterone equals high PSA. Perhaps the changes in diet and exercise are having a positive effect.

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It testosterone isn’t back to normal, do you expect the CA to come back too, or will it stay in remission?

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@ecurb

It testosterone isn’t back to normal, do you expect the CA to come back too, or will it stay in remission?

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Testosterone is currently very low, not at all back to "normal", but I have been on the merry go round more than once with Eligard shots where there did not seem to be any real relationship between low testosterone and PSA levels. Not in remission. In the middle of my Pluvicto treatments. Will get scans updated when finished with Pluvicto and that will give me a current read on actual condition. Until then I just keep on keeping on, one day at a time, coping with reduced strength and stamina and occasional pain.

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I am very interested in this discussion of how long the effects of Lupron stay after the Lupron shots stop. I had my last shot 3 months ago. I remember reading about all the side effects of Lupron and loss of muscle mass was the one I feared most. Even though I was 83 when diagnosed I was very physically active, taking care of a large yard by myself, repairing decks, hauling everything from a hundred bags of mulch to 60 lb bags of sand and paver base. I also went to the gym 3 days a week for 2 to 3 hours lifting weights.

My mineset after the diagnosis was that I would continue, as usually, everything I did before the the prostate cancer. Even during radiation, I'd get off the table and go to the gym. I'd arrive feeling tired but feel almost normal when I left. My ability to lift the same amout of weight has not dimished. It may be that I could have increased the weight w/o the lupron but at least my strength and muscle mass does not seem to have changed.

I take additional vitamins to helf prevent bone loss and I have a small very quiet fan I found on Amazon that keeps me cool at night for the hot flashes.

I am a firm believer that my getting angry sometimes, and forcing myself to overcome the bad hand that was dealt, is the primary reason I do not suffer as much from the side affects of Lupron as some on this site have.

Believe me. I have had to deal with other side effects from the intense radiation to kill the cancer which had spread to my lymphnodes. The mild lymphedema, the rectal bleeding.

But my mineset has made my life with advanced prostate cancer better than I could have hoped for. And there is another benefit, after a hard days work.........happiness that you did it and that you feel as good as you do. I reward myself with something I enjoy just about every afternoon/evening. The company of my wonderful, lovely wife, a stiff drink and a cigar, while lisening to our favorite music.

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@weakbutstrong

Hello My Brothers! (and Concerned Family Members and Friends),
I'm a "Cancer Survivor" too, with Gleason Scores of 7 and 8 in all 6 sections of the prostate (12 biopsy samples), an inital PSA of 8 in July 2019 that increased to 20 in January 2021 and I also had protrusions in the EPE, that I decided may be too close to the bladder and rectum for surgery. (I was concerned about "clear / clean margins": surgeons like to get all the cancer out of the body and I was concerned that I might come out of surgery with a bag or two, one for the front and one for the back.) I did get a second opinion and learned about a longitutinal study on men with pc (outside of my cohort) that indicated that after 8 years the all cause mortality for the men treated with external beam radiation (25 bouts), High Intensity Radiation (17 stainless steel tubes inserted into various parts of the prostate with an isotope guided through it and positioned for certain periods of time, my Radiologists also has her PhD in Mathematics and Physics.), and ADT -Androgen Deprovation Therapy forever, was only 3% mortality versus nearly 35% all cause mortality for the surgery only group. I've been married for over 40 years, my wife and I have been Blessed with Children and Grandchildren; I, We, both Love "The Marriage Embrace" and we had lengthy and tearful heart to hearts on which option was best for US. At Nearly 70 years old, We decided upon the EBRT, HIR and ADT protocols, hopefully choosing longevity over virility.
It has been 2-1/4 years on the LUPRON Shots and my PSA has dropped to 0.03, Testesterone to a < g which is almost nothing on both! My joints and muscles hurt, sometimes the knee pain is sharp and wakes me up in the night and radiates for some time. I've gone for X-rays and I'm told it is only arthitis. So I don't know if it's cancer going into the bone, arthitis, the statin for my heart, or if I'm a wimp! I used to go for long walks along a road on one of the Great Lakes here in America. Sometimes 14 miles, usually 6.3 miles; on brisk, cold, sunny winter days when I didn't have to carry as much water, a 20 miler. Only a few years ago I would jog marathons, now I can't jog 1/2 a mile. But, I'm taking a break from the Lupron for a little while. That is how I found this "chat room", I was trying to find out how long before my muscular strength and muscular endurance returns? Or am I being Selfish, am I risking my health and longevity to grasp at a mirage of fitness that was my former life, never to return, never to feel the cold brisk air as I pant and gasp my way up and down a hill, the pound of the legs and the mantra in my head- "Run Tall! Run Tall!", the good ache of a rewarding morning jog, with push-ups and sit-ups, energy to cut down trees and dig holes and do the outside work around the house, and most of all the strength to help others- I was strong, I could and would give it away freely to neighbors, family, strangers in need; that hurts me the most and is what I miss the most- the inability to be able to help others. I can still hug my wife, the dancing is still enjoyable but I can only dance fast for about 1/2 a song and then we have to slow down or I need to sit. Carrying the laundry up to the bedroom is like climbing up Mt.Marcy and I need to sit and rest on the bed for a few minutes. I sometimes cry now, on Important things like my feelings for my Wife, Children and Grandchildren; Our Country, The World and The Poor; and sometimes on stupid things like "chick flicks". I appreciate clean, crisp air and huge deep breaths, the trees' leaves that give us oxygen, the birds in flight, the beauty of the sky and Nature; the Goodness in Mankind and I've found a little bit of compassion for the foibles in my fellow man that I have always been harsh and quick to judge. I don't know about you dear sirs, but I have a faith, unfortunately not as big as the size of a mustard seed, but I have a faith and I've been richly blessed; not in material things or money; but with family a great set of Saints for parents and grandparents, a wife I have loved imperfectly but with all my heart and strength, kids who are good people, joyful grandchildren and in-laws, a meaningful job but with questionable results (painfully tragic some of my former students are murderers and some have been murdered), but I believe we all will have a Good, Peaceful, Understanding, Loving Better Existence in our next Life in Heaven. And the Great Gift of Strength and Vitality I had known and still grasp at, I have to graciously return to the LORD with great gratitude and thanksgiving for having been given it for nearly 60+ years, and as my other gifts The Creator has most graciously Given to me as they fade and falter, I too need to be Thankful and Grateful to Him for having been able to have them and use them for so many years. Good Luck and God's Strength and Comfort to your Wife and Family,dear Sir(s)!
I have run out of space and will in the following days post my wife's and my journey together for those interested. God Bless You All and All in the World. Thank you Doctors, Researchers, & Nurses, EtAl.
Sincerely,
weak but strong P.S. (Please, listen to YOUR Doctors on Your PC and make Your Decisions!) I'm just an old worn out gym teacher, not a healer. and my path may not be the correct path for you.

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Dear Weak But Strong,
I appreciated your story because it echoes mine. I am a former athlete who has worked out all my life until Stage 4 metastatic cancer was diagnosed 5 years after radical prostatectomy in 2017.

I am 20 months into my treatment with Multiple Meds, bicalutamide, Lupron shots, Abiraterone, 39 radiation treatments prednisone, etc. All to say, I am tired most of the time and although disappointing I have hope of regaining my strength. But that may not be in the future, but like you, it is my faith in Jesus the Christ that is my source of strength.

I read this daily and it is helpful to me...Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day-by-day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Blessings and Thanks for posting,
John from Texas

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@flax

I am very interested in this discussion of how long the effects of Lupron stay after the Lupron shots stop. I had my last shot 3 months ago. I remember reading about all the side effects of Lupron and loss of muscle mass was the one I feared most. Even though I was 83 when diagnosed I was very physically active, taking care of a large yard by myself, repairing decks, hauling everything from a hundred bags of mulch to 60 lb bags of sand and paver base. I also went to the gym 3 days a week for 2 to 3 hours lifting weights.

My mineset after the diagnosis was that I would continue, as usually, everything I did before the the prostate cancer. Even during radiation, I'd get off the table and go to the gym. I'd arrive feeling tired but feel almost normal when I left. My ability to lift the same amout of weight has not dimished. It may be that I could have increased the weight w/o the lupron but at least my strength and muscle mass does not seem to have changed.

I take additional vitamins to helf prevent bone loss and I have a small very quiet fan I found on Amazon that keeps me cool at night for the hot flashes.

I am a firm believer that my getting angry sometimes, and forcing myself to overcome the bad hand that was dealt, is the primary reason I do not suffer as much from the side affects of Lupron as some on this site have.

Believe me. I have had to deal with other side effects from the intense radiation to kill the cancer which had spread to my lymphnodes. The mild lymphedema, the rectal bleeding.

But my mineset has made my life with advanced prostate cancer better than I could have hoped for. And there is another benefit, after a hard days work.........happiness that you did it and that you feel as good as you do. I reward myself with something I enjoy just about every afternoon/evening. The company of my wonderful, lovely wife, a stiff drink and a cigar, while lisening to our favorite music.

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What an inspiration you are for the rest of us!
Thanks so much for sharing
your journey
Good thoughts!

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Interested in the "not fun" comment. Please expound.
77 y.o. PC Dx 9/23 with PSA of 27 (interesting that I asked my PCP for the PSA test, otherwise would have done it). Bx mixed 3/4-4/3. Body CT negative. PSMA scan confined to the prostate. First Lupron injection 1/31/24. Within a couple of weeks excruciating thigh, hams, and glut pain. Nearly impossible to get to the bathroom, etc. RT, seemed surprised and suggested Excedrin extra strength to little avail.
Prior to Dx and Lupron, 25 mile a day bike rider until 5/23 Achilles, then to PT and gym 4 days a week with mild-moderate weights, stationary bike and swimming. Second Lupron in June coinciding with radiation.
Severe cramps persist complicated by peripheral neuropathy affecting balance, etc., but mostly the pain.
Question: Does this pain subside over time or persist?
Question: Starting to feel leg weakness climbing stairs, etc.
What to do?

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@dodsvan29

Interested in the "not fun" comment. Please expound.
77 y.o. PC Dx 9/23 with PSA of 27 (interesting that I asked my PCP for the PSA test, otherwise would have done it). Bx mixed 3/4-4/3. Body CT negative. PSMA scan confined to the prostate. First Lupron injection 1/31/24. Within a couple of weeks excruciating thigh, hams, and glut pain. Nearly impossible to get to the bathroom, etc. RT, seemed surprised and suggested Excedrin extra strength to little avail.
Prior to Dx and Lupron, 25 mile a day bike rider until 5/23 Achilles, then to PT and gym 4 days a week with mild-moderate weights, stationary bike and swimming. Second Lupron in June coinciding with radiation.
Severe cramps persist complicated by peripheral neuropathy affecting balance, etc., but mostly the pain.
Question: Does this pain subside over time or persist?
Question: Starting to feel leg weakness climbing stairs, etc.
What to do?

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My best guess: try Trelstar injection instead of Lupron. My injection Nurse told me : Lupron injection uses a bigger needle and more fluid to inject into the body. I get mine every 3 months and don t have the side effects you described vividly. Best of luck. I m 18 months into the Trelstar doing ok, just tired out a lot but NO PAIN.

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