going off hormone therapy

[carguy1000]

When I started hormone therapy about a year and a half ago (zytiga and firmagon) I started losing weight despite eating like a horse. In researching hormone therapy., There was a nature article saying hormone therapy has a side effect of muscle loss. I started out at 185 and now I am down to 130. as a result, I have triggerpoints all over my body with no fat to cushion them and suffer quite a bit of pain. I’ve decided I can’t lose anymore weight and the hormone therapy has quit working, PSA is up to 171. My question is how long does it take for the hormone therapy to wear off which might help me get some get some weight gain. Also, how long does it take for it testosterone levels to trend upward the normal?

[Boywonder56]

I wouldnt be taking a vacation...from one car guy to another....if psa has gone up that fast ....might be time to get that dream car....just my ho....from hanging out in this bar full of misfits.....

[Kaliber in reply to Boywonder56]

lol

[StayingOptimistic]

I think patients gain weight being on HT and not loosing weight especially when they have a good appetite. I think something is wrong there. If it was me, I would not stop Firmagon but I will add abi and may be even chemo or any other treatments. When did you have your latest colonoscopy? Does your dr Check CEA marker? I don’t want to alarm you but if it was me, I would be looking for more treatments. I hope I am wrong though. Best of luck.

[tango65]

You could consider to consult with an internal medicine doctor about your weight loss, since you seem to be loosing muscle and fat.

Castration therapy causes sarcopenic obesity (muscle loss and gain in fat tissue everywhere, particularly in the abdomen). People in castration therapy when given testosterone usually loss weight.

It takes some time, usually measure in months for testosterone to recover after stopping hormonal castration therapy. It is very variable person to person and some people never recover normal testosterone levels.

[Radars in reply to tango65]

My testosterone has not recovered since stopping zoladex in 2016,only 8st walking skeleton,

[tango65 in reply to Radars]

Mine has not recover either, but my weight increased 10%.

[mrscruffy]

You need to address the muscle loss in the gym

[Hidden in reply to mrscruffy]

I agree. Any time spent in the gym is good, the more the better.

[Tall_Allen]

It sounds like you might benefit from seeing an endocrinologist. The weight loss may be due to thyroid hormones, insulin, or other causes. It is not because of low testosterone.

Now that castration resistance has set in, the last thing you want to do is stop ADT.

[Jac_J in reply to Tall_Allen]

Could you explain a little more please? ('the last thing you want to do is stop ADT')

Is this based upon the premise that a proportion of the PC cells would still respond to a nil testosterone environment although the rest would not. i.e some treatment is better then no treatment.

[Tall_Allen in reply to Jac_J]

ALL of the cancer cells are still stimulated by testosterone. As one becomes "castration resistant" the androgen receptors multiply in each cancer cell so that they become more sensitive to even the slightest amount of testosterone, not less sensitive.

[spencoid2 in reply to Tall_Allen]

I was a little surprised that my aberaterone was discontinued when I started chemo. I had an orchiectomy so no T from those guys but what about the adrenal T? Is there some reason that aber is not compatible with chemo?

[Tall_Allen in reply to spencoid2]

There was a compounding of side effects in this trial:

ejcancer.com/article/S0959-...

[spencoid2 in reply to Tall_Allen]

thanks. i guess my MO is keeping current. I am on doxy and pred.

[Jac_J in reply to Tall_Allen]

thank you TA

[Lrv44221 in reply to Tall_Allen]

I agree 🌹🍏🥦

[Hidden]

The weight loss symptom sounds completely backwards. Guys gain weight when low T.

Something else is amiss that doesn’t have anything to do with PCa.

[SalishSoul in reply to Hidden]

It is not a symptom of low T. PCa itself can cause weight loss.

For reference can look up the “what causes cachexia” section of this article: cancer.gov/about-cancer/tre...

It doesn’t mention PCa specifically but I know from family experience that PCa is one of the cancers that can result in muscle wasting weight loss.

[Hidden in reply to SalishSoul]

I am not a dr for sure, but he indicated that he is eating well and still losing weight. He has dropped quite a bit. It seems the nutrition isnt making it in for some reason.

[SalishSoul in reply to Hidden]

Weight loss can occur from poor-appetite/dieting/exercising, malabsorption, or skewed metabolism.

PCa does seem able to skew the metabolism in some people and appetite loss is not necessarily a symptom in that case (my late husband experienced this before his passing - healthy appetite coupled with unhealthy weight loss and muscle-wasting), so my guess is that looking at this as a cancer-induced metabolic change is most likely way to stumble on something to mitigate

(disclaimer I’m also not a dr)

[Brianne07]

Hi Mate

I have been on hormone therapy for nearly 12 months with little or no variation in my weight .I have a pretty healthy diet and strong appetite I have lost a bit of muscle in the arms but also have not been exercising as much as i should .I suggest a bit of a check up of the bowel just in case and and as some one suggested your thyroid.Most people be happy with weight loss??I maybe start zytiga in 2 weeks.Best of luck!

[anony2020 in reply to Brianne07]

I also have weight loss but that may be at least partly due to going veggan. You are right. My BMI now is under upper range. So not bad. 🙂

[London441]

Get yourself check out for sure. Classic ADT induced sarcopenia means adding fat and losing muscle simultaneously, so the actual weight is not the issue, it’s the fat increase. Losing that much on ADT indeed makes no sense which is why you’re getting a lot of suggestions to get that part sorted.

Once you do, get busy with the weights. They mitigate or eliminate the side effects of ADT, and promote all important health benefits you can’t get by any other means. Waiting for the T to come back without the lifting is not the way to go. You want to maximize your chances at full T recovery if you’re going to do this. Supplement with T if you must, but it’s far better to try lifting alone first. It’s the best way to age the body well and more slowly-by far.

[PSAed in reply to London441]

Wise words. I always gain something from reading your posts.Thanks

[MichaelDD]

Not much in your bio, so don't understand much about what you've gone through.

I can tell you that therapy for me was tearing me apart. So I've been on "vacation" for the last year and a half. My weight I've lost 35 lb this last year. For two and a half years I have been virtually undetectable with my PSA. I have ultra- sensitive tests done every 3 months. In the history of my APC cancer I've never been over 12 PSA. My T count negligible when I was on Zytiga Prednisone and Lupron. It's now 680 at last count. Took about a year in 2 months to get there.

Being off of everything has helped to calm all the BAD effects that I have. For some reason I have neuropathy. It just beats the hell out of me literally. 0ther issues haven't gone away by a long shot, but are reduced in their harshness.

I can tell you that my Oncologist(s) wouldn't have allowed me to stop my Zytiga if I was showing any movement with my PSA other than non-detectable. Allen stated that you shouldn't stop, and I was told the same thing by my Oncologists. If I was anything above what I am now ( or back then)I would be on ADT. My Oncologists know that I have always questioned the quality of my life versus quantity. I can understand personally if you decide whatever you need is good for you. Medically though (in my opinion and pointed out by others) you need to keep your foot on the gas right now, and not let this stuff get ahead of you. When mine shows detection again I'll be back in the fight.

[Radars in reply to MichaelDD]

I stopped zoladex in 2016 after 18mths,and my testosterone has not recovered weight training makes no difference I am only 8st and now been diagnosed with osteoporosis psa 0.05 locally advanced prostate cancer.

[anony2020 in reply to Radars]

Were you given any medications?

[Radars in reply to anony2020]

Only medication I'm on is tamulosin and betmiga for flow and urgency, my psa check is every 6 months, I am waiting from endocrinologist regarding my osteoporosis treatment, all this is because of no testosterone

[VCinTx in reply to MichaelDD]

I stopped ADT after 18 months undetectable. I went on TRT low dose and I feel great now. I changed my diet and exercised and I've lost 65 pounds in 26 months. If my PSA goes over 2 I will restart ADT. This vacation feels great.

[Dont08759]

wow, my last Lupron shot was on July 29th and I’m still getting hot flashes! Your chart is most helpful! Thanks for posting!

[Grouser]

I am writing on behalf of my 80 year old husband . The grouser was only 150 pounds when he started Lupron. He went down to 138 in 6 months. He really did not eat very much. His strength loss was rapid severe ,- he needed a walker and could not walk up steps. Oncologist recommended a vacation from Lupron. After 3 months Weight was up to 150 he was walking without a walker. He does PT 3 times a week. After 9 months without the injections his PSA is climbing but still under 2. No advice just chiming in because no one talks about weight loss perhaps and unusual side effect that is not recognized. Good luck to you!

[Marshb52]

went off of it also it destroyed my body just had surgery for gynecomastia. and weight gain hot flashes. It got my PSA to undetectable. I’m taking AVEED now to restore testerone. Closely monitored for PSA. I’m feeling much better and am a man again.

[Burk]

Thanks for that chart. I'm at 67 days off Lupron and feeling very little effects of T recovery. As a matter of fact, I've been quite discouraged lately - tired of the drag. I'll move my bull's eye to 110.

[lowT163 in reply to Burk]

my treatment looks a lot like yours. Lupron ,zytiga,radiation. Feb 2020 was the end of 18 months of adt. As of today my testosterone is at 200 but only been that high for last 6 months. It took a year and a half to get above 50 so don’t give up. My issues also had diabetes kick in after treatment which hurts T levels. Fight the things that cause fatigue best you can and there are a bunch.

[Burk in reply to lowT163]

Thanks for sharing you experience. It's good to know that T will come back. I was expecting a faster return to normal after Lupron. Better days ahead!

[lowT163 in reply to Burk]

I feel better than the last two years but 200 is not good and mine has stopped going up. The fatigue is terrible. I haven’t had the guts to add a testosterone supplement and am trying to lose all the weight I can to help it go up. I guess fat reduces the amount of testosterone. Tastes good spit it out. Same old saying.

[SteveTheJ]

And the bonus: how long does it take for the cancer to return?

[Hidden]

As others have mentioned, something is very wrong to be causing that kind of weight loss. Has you medical team not shown any concern about this? Time to find a new or different doctor.

[Burk]

On 10/28/22 - tT = 8

[Lrv44221]

I totally agree with this. Weight loss is most likely caused from some other body function (thats not functioning well) 🌹🍏🥦

[Largebill]

The answer regarding testosterone recovery likely is different for each one of us. I declined an Eligard shot in April and by time of my next blood draw in October testosterone had recovered from 12 to 279 and PSA went from 0.05 to 0.7. If your PSA is already at 171 it is quite likely that hormone therapy is no longer working, and your PC is now castration resistant. It is time to get with your oncologist and decide on your next course of treatment. If you are not comfortable with your oncologist's plan, don't hesitate to seek a second opinion. Don't know how far it is for you, but some have had success visiting Dr. Kwan at the Mayo Clinic. He apparently takes a different approach to the fight. You can search Youtube for videos of him talking about his process.

[Burk]

I meet with my MO 01/23/23. I plan to test just before the appointment. I will discuss the outcome with him. TA suggested a drug that he said can "jump start T". Do you know what that would be?

[Burk]

Also, here is the result of my 10/23/22 Estradiol test:

Component Your Value Standard Range Flag

Estradiol, Enhanced <15 pg/mL 0 - 32 pg/mL

Pretty low - Don't you think? Not flagged as low.

Apparently, it's less than detectable

[NOCanceros]

Hi

I think the best way ask a professional DR. about this matter and to chuck up why.....!

[Burk]

Which raises another question - Is there more than one test for E2, & if so, which test should I be requesting?

[JRPnSD]

I was on the oral version of antagonist ADT (Orgovyx/Relugolyx) and my hormone levels were back to normal within 2 months after stopping the drug.

Weight gain is usually associated with ADT, so you need to review the situation with your doctors...or get a 2nd opinion.

[Mascouche]

The weight loss could also be a bad reaction to the ADT. I have gained weight since on Lupron+Zytiga (went from about 165 to 200 in two years). But when I tried Casodex in 2020, I went from 165 to 147 in about two months and thought I was dying as I was out of breath all the time. Thankfully everything started to go back to normal within just a few days of stopping Casodex.