T never recovered after ADT and 44 EB... - Advanced Prostate...

Advanced Prostate Cancer

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T never recovered after ADT and 44 EBRT sessions.

Chasu profile image
18 Replies

I had gleason 7 /3+4. Completed ADT and EBRT (44 sessions) November of 2020. Undetectable psa up until 6 months ago. Then went to 0.1. I had been taking Androgel ( 2 pumps daily) my MO declared that I was " out of remission" and I then stopped the TRT. Since then, I've had two psa tests at 3 month intervals. Psa is now at 0.03. My uro and MO are of the opinion that T " feeds the fire" for pca. My T is at 22!! About the same as if I was on ADT? Previous to ADT and EBRT my T was 165 so I'm thinking I was hypogonadic then. And still am obviously. I have an RX for the androgel but trying to decide if I should start it again. I have very little energy and no libido ( 77 years) but getting by. I read this site daily and love the information provided here. Any suggestions much appreciated.

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Chasu
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18 Replies
Derf4223 profile image
Derf4223

Exercise, exercise, and more exercise. Lots of material here and on the internet about that. It will not increase your T, but is almost certain to help QOL and reduce the odds of dying from PCa.

Don_1213 profile image
Don_1213 in reply toDerf4223

That's a wonderful thing if you can do the exercises without pain. Pain that increases with exercise isn't going to encourage increasing the exercise since it increases the pain.

Exercise IS good - but it's also much too simple to think or advocate it as the cure for everything, including dying from PCa.

Derf4223 profile image
Derf4223 in reply toDon_1213

@Don_1213, good point.

Luckily I am not a doctor. ANY and ALL suggestions or advice on this message board must be considered to be a starting point at best, to be done in coordination with doctors.

From your bio, you and I are very fortunate in having undetectable PSA during treatment. And in your case, holding at 0.2 since. I'll find out after my ADT is stopped this week at the 21 month point, at my MO's suggestion.

Have you been exercising or is pain a factor for other reasons?

Don_1213 profile image
Don_1213 in reply toDerf4223

I exercise as much as I can - and pain is the determining factor there. Some days are better than others. The pain isn't due to PCa - it's partly due to side-effects from the treatments for PCa, in particular ADT which aggravated an existing cardio-vascular issue.

dave2 profile image
dave2

My bias is to first get your PSA to return to undetectable (using ultrasensitive assay), then give TRT another try. But I don't know if there's research supportiing that approach. See ManuteBol1's 6/22/24 post and replies on this topic for more; also do a HU site search for TRT.

Snuffy Myers said many times that complete remissions matter and should be pursued as a goal. I followed that advice and it worked for me. But confusingly, we now have some research suggesting that high-normal serum testosterone may be protective against BCR for many with PCa. It's discussed in the 6/22 conversation.

Tall_Allen profile image
Tall_Allen

You had radiation, and not a prostatectomy, right? If that's right you will never have an undetectable PSA. You were never "out of remission."

Androgel shuts down your natural production of testosterone.

London441 profile image
London441

If your baseline T was 165, where are you hoping to get to with Androgel? It’s a weak supplementation. You can find an oncologist willing to give you testosterone if you try, but it is indeed a risk. Androgel may not do much in your circumstances. How much do you exercise and what kind?

Chasu profile image
Chasu in reply toLondon441

My T was 600 when using the gel before. I got from an endocrinologist. I have an eliptical machine that I use 5x a week

London441 profile image
London441 in reply toChasu

The elliptical is nice. If you lift weights it will change your life for the better substantially, but of course it’s your business.

Retireddoc profile image
Retireddoc

Since you asked for advice I am willing to give my 2 cents.

TallAllen is right. Since you were taking the Andogel (even if a weak supplement) your body senses that you have T circulating and therefore doesn't stimulate the "factories" to begin production again.

The chance of T returning to even low normal levels are dependent on mainly 3 factors: age, duration of ADT therapy and the baseline T level prior to beginning the ADT. It sounds to me like you might be zero for 3. Statistically, it is unlikely your T returns to normal.

I believe it is unadvisable to seek advice from a bunch of laypeople that 1) don't really know medicine and the complicated treatment of prostate cancer and 2) don't know the details of your medical history.

You have 2 treating physicians that advise you against taking T supplement because they "feed" the PC. I know this isn't what you want to hear. You can continue to seek other opinions and eventually you will find someone to tell you it is ok. Ultimately, it is your body and your life-you are driving the bus.

I agree with what a few posters said about exercise. Ramping up your exercise and light strength training helps the fatigue. It has helped me. I am 3 years post RP, triple therapy, pelvic radiation. My PSA is undetectable. My last 3 month Lupron shot was July 2023. My T level last week was 23. My T level 3 years ago was 500+. I am 71 and was on Lupron for only one year. I don't know if my T will ever recover but I won't ever take T supplements unless suggested and directed by my MO at Johns Hopkins.

This is just my story and my opinions.

Mgtd profile image
Mgtd in reply toRetireddoc

Always enjoy reading your comments and thanks for taking the time to post and share your knowledge.

MateoBeach profile image
MateoBeach

some (many) men never have recovery of natural testosterone after some years of ADT. You have very low risk in doing a trial of TRT for a period and checking PSA monthly to see if it rises significantly from your current .03 since you are pretty far below levels indicating BCR. You can always stop it if needed and the benefits to your body and functioning may be worth it. That is what I would choose to do. MB

Chasu profile image
Chasu in reply toMateoBeach

Hi and thanks. I was on ADT for 6 months only. But at 165, didn't have much to start with. I think I was a victim of a cookie cutter approach.

j-o-h-n profile image
j-o-h-n

Complicated, ain't it?

Good Luck, Good Health and Good Humor.

j-o-h-n

janebob99 profile image
janebob99

If you were/are hypogonadic, then your LH and FSH are probably very low. So, your testes have never made much testosterone in the first place (Note: the adrenals also make testosterone). So, TRT may be a good way to go now at your age, since your PSA is low (0.1) and since you are symptomatic. If your PSA rises above 2 down the road, then you can just stop the TRT and do another PSMA-PET scan to look for metastasis.

A critical metric is your PSA doubling time. You should monitor that closely.

You may also want to look at the ( many) papers and excellent YouTube lectures by Dr. Abraham Morgentaler at Harvard Medical School on the low risk of doing TRT for men who are castrate resistant with advanced PCa.

Osteoporosis from long-term ADT is a serious concern for older men. Have you had a recent DEXA scan? If you do have osteoporosis, then using estrogen patches would be an excellent way to grow bone.

Bob in New Mexico

Check out BAT and see if your oncologist will go for it ….

Don_1213 profile image
Don_1213

Sadly perhaps - much the same here.

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What I don’t understand is , why the scorched earth treatments at 77 years old and with a 3 +4 gleason score. Just my 2 cents but I would walk away and leave it alone. They will treat you all you want whether its good for you or not. Let the slings and arrows fly cause I know I’m gonna get some flak for this.

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