Stopped taking Orgovyx 7 months ago (... - Advanced Prostate...

Advanced Prostate Cancer

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Stopped taking Orgovyx 7 months ago (T recovery only 80 baseline was 286 ) do I start TRT? am I risking Reoccurrence?

JWS13 profile image
8 Replies

I stopped RT (IMRT 20 tx ) on 2/28/23. I stopped orgovyx (4 months) on 5/31/23 . (It has now been 6 months since stopping orgovyx. My T has recovered to 80. My baseline is 286.(which was fine)

Advised when given choice of adt -4 months of orgovyxx- then 4 months for recovery of T-

that didn't happen.

Gleason 4-3, Psa .2 (10/23), PSMA -No Mets, Original PSA (pre-treatment 8), 68

I am symptomatic for low T , fatique, weight gain, libido loss, ed. cognitive loss and miserable. I have a terrific wife who has put up with no sex for over 8 months now and looking at the possibility of 1-5 years given below.

These are the 5 top opinions of my oncologists and mens health practitioners who deal with the "recovery" (or lack thereof testosterone issue ) at 4 different centers of excellence.

1. MO - "Start TRT right away - you are getting older and you will not get a reoccurrence".

2. RO -UCLA -"Possibilty of a reoccurrence- start trt slowly NOW with men's health and get only close to baseline 286." (Waiting one year better).

3. RO - UCSD - "Possibility of reoccurrence- thoroughly comfortable with starting 5 years -1% unlikely reoccurrence after 5 years -

**However, given my age and my individual QOL, start in one year TRT after waiting to see if my OWN T doesn't recover is reasonable but not as safe as 3-5 year wait. One year start much higher risk of Reoccurrence.

4. Cedars-Sinai- essentially same as UCSD , wait one year hopefully YOUR T RECOVERS , if not then after one year start TRT bring to 286 baseline.

The issue really comes down to longer you wait up to 5years the least risk of TRIGGERING A REOCCURRENCE!

Given the salvage options only topping out at 50% cure rate a reoccurrence scares the crap out of me as the SOC would be HORMONES FOR REST OF MY LIFE.

So alternatives from docs , starting now with TRT and possibly Triggering a Reoccurrence VS. waiting one year for my own t to recover , if no recovery in a year then starting TRT (Risk of reoccurrence ), or waiting 3 -5 years for virtually small risk of reoccurrence.

Do I start TRT? am I risking Reoccurrence? do I wait? How long? TIA

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JWS13
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8 Replies
Tall_Allen profile image
Tall_Allen

I think the RO at UCLA gave you the most prudent advice. Risk is inability to read results of your potentially curative therapy, not recurrence.

billyboy3 profile image
billyboy3 in reply toTall_Allen

Tall, can you please send me your cell as I need some advice asap. thanks billy my cell is 587 778 4808 email is tridanpm@shaw.ca

Tall_Allen profile image
Tall_Allen in reply tobillyboy3

I sent you an email, but suggest you delete this post because bad people look for this sort of thing.

JWS13 profile image
JWS13 in reply toTall_Allen

In your last response to "jewelry Lady" you indicated that you thought somehow that I was not interested in your response to my posts...that is decidedly incorrect..You are a wealth of knowledge and I appreciate your informed responses. Hopefully this clears up that matter.. please dm me or email .. Thanks Allen

London441 profile image
London441

How much do you exercise and what kind?

As Dr. George Sheehan (georgesheehan.com/bio) - Cardiologist - 1st 50yo man to record sub 5 minute mile - Died from PCa said --

“We are each an experiment of one. A unique, never-to-be repeated event.”

Your 4+3 is not like my 5+5 and we are each unique with our PCa but I began T injections in 2016 less than 1 year after my diagnosis and treatment. Had a minor recurrence in 2018 of only GL6 and GL7 spots that were treated and have been following my own self directed BAT protocol.

pubmed.ncbi.nlm.nih.gov/353...

My *T* following injection attains 1,600ng/dL when on continuous cycling of the injections but since I began with a bilateral Orchiectomy (surgical castration) the effects of HIGH *T* is not *a feeling of being YOUNG and VIRILE* so YMMV.

Research then proceed with caution and increased knowledge of what may occur.

p.s. - another Dr. Sheehan quote I firmly believe in --- r.e. the QoL (Quality of Life) >>

“Don't be concerned if running or exercise will add years to your life, be concerned with adding life to your years.”

ron_bucher profile image
ron_bucher

"...you will not get a reoccurrence" from a medical oncologist?

It took 9 months for my T to get within normal range after my last Lupron shot which was every third month. On the bright side, my "Lupron hangover" gave me an extra few months of benefit from the drug without taking it.

Nfler profile image
Nfler

Research it as much as you can but I would lean toward getting on it as they’re finding it t doesn’t cause pca and in some cases prevents pca. If it does cause a rise in pca you can track n hopefully treat it asap. They’re using the bat therapy to treat mcrpc and having good results on early studies… good luck in whatever you choose n hope your qol really improves

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