Anyone had success regaining muscle strength with low testosterone?
I had Lupron and radiation treatment for Gleason 7 prostate cancer,
PSA is now <0.04. But my testosterone level is 157. Very very low. And my GP says that there's not much I can do to recover the level. I will be 78 soon.
I am seriously fatigued. I have lost muscle mass. My fitness level is very low. I get exhausted very very easily.
Has anyone had success regaining muscle strength and fitness with very low testosterone levels?
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HBP,
Thank you for the information. Dr. Donin is also a Urologic oncologist. I think you are in good hands!
Why did they start you with Erleada instead of Lupron or Orgovyx?
I will be 90 in September this year. I had biopsy on March 5, 2024 when I was 88. My urologist at UCI suggested RT is best choice for me who has done RP 2,000 times!
My main problem is fatigue. I was vegan until few weeks ago. Now I started eating Samon couple of times a week to see if it helps with my fatigue.
what is your diet like? How much protein you get each day?
actually, they started me on lupron and Erleada for 6 months, then surgery, then 6 more months of lupron and Erleada and that start 41 months ago and since then PSA undetectable Me G 9, locally advanced, incurable aggressive and 78 years old.
Dr Donin disappointed me as an oncologist as he should have recommended a gestudy and suggested a plant diet which he did not do. I am on a plant diet but I do eat chicken and fish
Good luck to us all.
yes plant based whole food diet with protein from Tofu, Lentils, Beans, nuts and seeds is good for overall health. Eggs, Dairy and red meat not so good from what I read.
I thought you said you are 86 in an earlier post? you are only 82, right?
Last time that I looked I was and still am 78 and I have been treated by UCLA , Donin and Reiter since 2021. If I posted differently in the past it might have been joint pain while posting. I have that and I have been advised that it is probably a side effect from Lupron.
My testosterone has been almost nonexistent since I started Lupron/Abiraterone/
Prednisone four years ago. I did not gain weight or lose muscle due to doing intense yoga three times a week, resistance training (weights) two times a week and walking 3-5 miles a day. I have been off Lupron for 9 months now, but my testosterone is only slowly returning so I am still plagued with the side effects, although they are improving.
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3 ReactionsDo you absolutely need it? If not, I suggest staying off everything. People who take ADT intermittently live longer than people who take it continuously, although they are somewhat more likely to die of the cancer, they are much less likely to die of other causes. Also, if you keep taking ADT drugs, you will probably become resistant to the drugs and they won’t work any more. ADT has awful side effects. If your PSA is very low and is stable, maybe wait for it to start increasing on a regular basis before going back on ADT.
There is a new breed of ADT drugs. Orgovyx being one, often used in combination with Nubeqa or Xtandi. My doc will probably start me on Orgovyx + Nubeqa saying combos have now become standard care.
I count myself lucky for two reasons, one is my cancer was mostly G6 with one core upgraded to G7 upon a second opinion (slide sent to Johns Hopkins)
Second, I choose to remain on testosterone replacement throughout and almost 4 years post SBRT, my PSA is 0.06
My family doc and urologist's all decided to stop my prescriptions for T even though my testosterone level fell to 25 after stopping TRT
I felt like Sh--! I can deal with weight gain muscle loss and loss of power but the extreme anxiety and profound sadness was too much for me. I was crying at the drop of a hat or any silly sad commercials and would fly off the handle with anger at times.
I found a clinic some miles away and withheld my Pca diagnosis
Yes I told my oncologist and family doctor, urologist's etc.. but not the clinic doctor.
So bottom line is maybe I dodged a bullet and I am not suggesting this for others but I am doing just fine and am glad I took the chance.
Again my Pca was lower risk then many others and please listen to your team as well as use common sense-only you can assess the risk benefit
Glen
In a couple months, it will be one year since I stopped Orgovyx and my testosterone is dropping instead of going back up. My urologist is very cavalier about it, saying it happens sometimes and that I may have testicular failure but that TRT is 100% off the table. 3 months after stopping I was in the mid-300s which I thought was a good sign, six month test I'd dropped to high 200s, nine month test I'm in the low 200s.
I'm reaching the point where I'm starting to have some of the effects I had while on ADT and this is fueling unbelievable anxiety since I generally found the whole ADT experience to be extremely traumatic.
My pre-treatment T was in the 500s and now it's in the low 200s and falling. I, too, am thinking about going to an endocrinologist and not telling them of my PCA diagnosis either. But I am going to wait the full year to see what happens. My only fear is my cancer center will quickly figure out I'm doing this if my T jumps from the low 200s into the 500s and drop me.
I am happy that you are thinking about advocating for yourself.
Look, I did not make this choice lightly but I just could not stand feeling like crap ALL the time!
I think I could open up to my clinic doctor and he would still prescribe but why risk it?
All my bloodwork is good and my PSA continues to drop.
When I first went to the clinic I told them my current prescriber was constantly cutting me off TRT every time my bloodwork numbers were "off" while that was not the whole truth it was actually true because he had stopped more then once because maybe estrogen level was "off"
Then I had to wait for a second test a month or so later.
My goal is to one day get a regular urologist to prescribe and the reason is cost.
I have to take a subway, a ferry then a bus to get to the clinic which in itself is a pain in the butt and secondly, it cost $100 for each injection. I did talk him into loading two syringes to take home due to the distance but I pay $100 for those (each has 300mg) So I spread it out so instead of 600mg per injection, I get the 600 in office then take 300 and after a couple of weeks take the other 300
Yeah not ideal but my levels are good at last bloodwork-850 which the doctor likes
He prescribes more by effect and mood then actual level which I believe in.
So it works out that $200 gets me treated for six to seven weeks.
Good luck