5 months after stopping the 4 mos of... - Advanced Prostate...

Advanced Prostate Cancer

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5 months after stopping the 4 mos of taking orgovyx still very symptomatic of low t (miserable)..told t may never recover (79),take trt? ?

JWS13 profile image
21 Replies

Stopped taking 4 months of orgovyx may 28th. It is now 5 months after stop taking pills. Still very symptomatic of low t, (i.e. fatigue getting worse,(tired as hell) , cognitive issues getting worse, weight gain, (exercising but still), joint aches, sugars climbing...MISERABLE.

need my life back...oncologist says most likely t will not get much higher than the 79 on labs two weeks ago suggest TRT asap..

urologist says don't start trt "it may trigger reoccurrence" what the hell is that ..old science ..hasn't that been discredited by mega analysts and trials and most oncologists?

they say if your feeling miserable ,take the gel right away don't wait for your .2 psa to reach nadir in the next 6mos -1 year just for the record books..QOL should begin now...start trt..

Summary : miserable from Low t symptoms and worried the longer I wait hoping for my own t to come back the more at risk I become for cvd, osteoparosis , diabetes , etc. (low t symptoms),

i know my own t is better than trt but only had 4 months on orgovyx and i am seeing no relief of symptoms 6 months off and might never come back..

still worried that the saturation theory re: trt and psa is still not discredited and many docs still think TESTOSTERONE still can trigger a RECURRENCE??

All responses welcome..

68, psa .2, psma pet -no mets, ece, 20 imrt, 4 mos orgovyx finished 5/28/23 ,

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JWS13
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21 Replies

Have you had your Estradiol levels checked? If low, E2 add-back might help with some of those symptoms until your T comes back. Albeit, wont help Little Johnny. Im thinking thats a major concern of yours?

JWS13 profile image
JWS13 in reply to

correct ...johnny is a major concern...have not had estradiol checked..

London441 profile image
London441

What was your T at baseline? Get rid of the urologist. How much are you exercising and what kind?

JWS13 profile image
JWS13 in reply toLondon441

t at baseline was 286 ... spin bike 1 hour a nite -5-6 nites a week...

London441 profile image
London441 in reply toJWS13

I would go ahead with the TRT. As I said, urologist is of no use anymore-for anything related to your disease anyway. You did say the oncologist is on board correct?

However, it's best not to depend on T recovery (or replacement) and cycling alone. You need weights or some form of resistance training. If you add that now, your fatigue will be lessened greatly because you won't be losing muscle mass in the rest of your body. The spinning isn't doing anything for that.

Horse12888 profile image
Horse12888

Given that you were on Orgovyx, it's clear that your testicles are not recovering and that TRT is in order.

The modern thinking is that TRT is no more dangerous than letting one's T recover naturally; it's the same chemical. I would simply find another urologist who understands this.

My T recovered (from 12 months of Eligard) in about 5 months.

I was miserable beyond words; I would have done TRT in a heartbeat.

JWS13 profile image
JWS13 in reply toHorse12888

thanks...no worries about triggering a reoccurrence? subqt shot 100 ml rather than gel? don't wait for my .2 psa to reach nadir?..thanks

JWS13 profile image
JWS13 in reply toHorse12888

horse..if you "would have done trt in a heartbeat" because you were miserable...why did you wait 5 months after finishing Eligard for your own natural T to come back? why didn't you start TRT as soon as u finished eligard? were you afraid of reoccurrence or?

I , too am miserable..Best and thanks..

Horse12888 profile image
Horse12888 in reply toJWS13

This was 9 years ago, before TRT had been determined to be safe, and my MO was adamant that it was dangerous.

JWS13 profile image
JWS13 in reply toHorse12888

got it...that's what i thought...thanks.

edfriedman profile image
edfriedman

For men with prostate cancer who have had their prostates surgically removed, those that took testosterone had less chance of experiencing biochemical recurrence, and for those who did experience biochemical recurrence it took longer on average than those men not taking testosterone. See:

bjui-journals.onlinelibrary...

Also, there is evidence to support that the most dangerous levels of testosterone to have with regards to prostate cancer is above castrate level and below 350 ng/dL. See:

ascopubs.org/doi/abs/10.120...

Finally, T levels below 350 ng/dL greatly increase the risk of heart attacks and strokes. See: ncbi.nlm.nih.gov/pmc/articl...

Horse12888 profile image
Horse12888

Exactly, no worries. I have no familiarity with the protocol for TRT.

Scout4answers profile image
Scout4answers

Your post says PSA 8, is that correct?

JWS13 profile image
JWS13 in reply toScout4answers

yes

JWS13 profile image
JWS13 in reply toScout4answers

sorry guys my psa WAS 8 BEFORE TREATMENT....IT IS NOW .2

JWS13 profile image
JWS13 in reply toScout4answers

sorry guys my psa WAS 8 BEFORE TREATMENT....IT IS NOW .2 after treatment!

Scout4answers profile image
Scout4answers

A little confused... if your PSA is 8, why are you not continuing ADT? I would think that you are CRCP or BCR based on that PSA. Your complete PSA history would give us more info to help you make a good decision.

I do think that you should be consulting with a Medical Oncologist if you are not already.

TeleGuy profile image
TeleGuy in reply toScout4answers

Definitely agree on both! You should get a good MO and restart ADT.

JWS13 profile image
JWS13 in reply toTeleGuy

sorry guys my psa WAS 8 BEFORE TREATMENT....IT IS NOW .2 after treatment

JWS13 profile image
JWS13 in reply toScout4answers

sorry guys my psa WAS 8 BEFORE TREATMENT....IT IS NOW .2

JWS13 profile image
JWS13 in reply toScout4answers

sorry guys my psa WAS 8 BEFORE TREATMENT....IT IS NOW .2

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