New to the site and diagnosis

SUPER fit 66 year old. Only symptom was slow urine for past couple of years ( assumed due to age ). Take NO meds and have NO medical conditions. Went to for testosterone pellet for better daily gym weight lifting and running and had a PSA of 100. WTH?

Then the journey started. MRI showed Pca and some regional (2) nodes affected. Gleason of 9. ALL other scans negative. Took 30 days casodex and just got second Lupron depot injection. PSA now 2. Will repeat all labs and scan in November. Plan is RT for 5 weeks.

Questions:

Treatment for hot flashes ? Treatment for no libido and no erections since first casodex pill ?

Any other advice is appreciated. Signed, Still in shock. Hoping for full recovery.

[Scout4answers]

Very similar situation... see my profile.

Best advice I can offer is start lifting weights NOW and get daily aerobic exercise, as that has mitigated most of the side effects of ADT for me.

You have found a great source for info to empower you to make educated decisions.

Welcome

[Hidden in reply to Scout4answers]

thanks. Your treatment plan similar ? Any thoughts on my questions other than my regular exercise plan ? Appreciate your guidance / thoughts.

[Scout4answers in reply to Hidden]

Your sex life is not over, unless you choose it to be, we still have sex 3-4 times a week. start thinking about orgasms' and intimacy as the goal, not ejaculation.

[Hidden in reply to Scout4answers]

T is 14 from 300 plus. Onc says " chemicals being removed that allow for sex ".

[Kaliber in reply to Scout4answers]

Bragger …. Yayahahahaya yayahahahaya.

[Scout4answers in reply to Kaliber]

Use it or Loose it.

[Kaliber in reply to Scout4answers]

Use what …. I have trouble just trying to find enough in the folds of empty skin to keep from peeing down my leg. ( tmi huh ) yayahahahaya

[CAMPSOUPS in reply to Kaliber]

Mine ain't hangin down towards the toilet bowl water no moe.

[Kaliber in reply to CAMPSOUPS]

I hear that yayahahahaya … plus I’d need a rent-a-mommy to go with everything else mentioned above. Just say’in

[mrscruffy]

I use tri-mix for erection works great

[Hidden in reply to mrscruffy]

What is that please ?

[mrscruffy in reply to Hidden]

It is a compound that u inject into penis on the shaft. Gives great erection. Sometimes long enough to go a second round. My wife loves it

[Hidden in reply to mrscruffy]

Prescription ? Ingredients ?

[mrscruffy in reply to Hidden]

Prescription only, from a compounding pharmacy. Not sure of the ingredients

[Kaliber in reply to mrscruffy]

owwwww … Owwwwww …..OWWWWW. ….!!! Which means you still have enough left to grasp without mink lined tweezers … must be nice.

[mrscruffy in reply to Kaliber]

Not horrible, most of the nerves are in the head so easy peasy

[Scout4answers]

mine is > 7 from 450s, has been that way for 10+ months.

Onc says " chemicals being removed that allow for sex ".

Not sure what this means.?

Check out pinned posts to your right and read loss of desire...

[Tall_Allen]

You should have checked for distant mets with a PSMA PET scan before starting therapy. If there are no distant mets, you will need whole pelvic radiation and at least 2 years of hormone therapy.

Consider this clinical trial:

clinicaltrials.gov/ct2/show...

For the hot flashes, you can try any of the following:

• estrogen patch with tamoxifen

• Megace

• Oxybutynin

• Venlafaxine

• Aural acupuncture

There's nothing much to be done for libido while you are taking hormone therapy.

[Hidden in reply to Tall_Allen]

We have asked for a PSMA PET but oncologist does not feel need for that since PSA now 2 from 100. How sensitive is the PSMA and should we pursue getting one ? Radiation scheduled to start for prostate and 2 LNs in November. Would think we should know before RO starts in case some smaller areas need zapping.

[Tall_Allen in reply to Hidden]

It's not for "zapping," it's for futility that you should know. If there are distant metastases, there may be no need for whole pelvic radiation. You can still "debulk" the prostate with radiation.

You wrote "Radiation scheduled to start for prostate and 2 LNs in November." Just zapping the 2 LNs is a BIG mistake, imo. Once again, this highlights the importance of getting a PSMA PET scan to eliminate the diagnosis of distant metastases. If there are no distant metastases, you are potentially curableWHOLE PELVIC radiation and 2 years of hormone therapy. If you only zap the 2 LNs I can almost guarantee that you will not be cured.

[Hidden in reply to Tall_Allen]

I mispoke in saying zapping.

RO says focused beam to prostate and lymph nodes / region. ( drew out a large area / field ) Will PSMA PET pick up mets with a PSA of 2 ? MO says no.

I am unsure if that mean whole pelvis. We will confirm. ty

[Tall_Allen in reply to Hidden]

PSMA PET was approved for high risk patients like yourself because it can find them. The longer you wait, the less chance that the PET scan will find any metastases, so it is a self-fulfilling prophecy.

The whole pelvic field was expanded last year. Make sure your RO knows that.

redjournal.org/article/S036...

[London441]

Your ability to achieve erection will likely be overtaken by the inevitable zero libido characteristic of ADT. You can work on getting it back later.

The Trimix does work well, but erections with no libido is a bit weird and definitely not for everyone. Just have to try it, everyone responds differently.

Your best defense against all the side effects is your fitness, but if by ‘fit’ you mean cardiovascular fitness, endurance good VO2 max etc that is good but you will need to lift also.

Whole body. No lifting on ADT spells trouble-rapid onset muscle wasting, usually accompanied by persistent fatigue.

If you already lift great, keep it up no matter what.

[jastf]

Hi. With a gleason 9 you are probably in for the long run.I use estrogen patches for hot flushes; not a complete "cure" but effective.

Libido is partly mindset; but to retain elasticity in the erectile tissue you could consider daily 5mg tadalafil (Cialis) as otherwise cells atrophy!!

Regards

[Rolphs in reply to jastf]

Do you have any references to site for using Ciara’s “otherwise cells atrophy .” This information would push a lot of us onto a ED drug. Thanks

[jastf in reply to Rolphs]

Hi. Just one I picked at random from lots of info online. Not that all is true in the depths out there! However links to this sort of report are in there too.Whilst this is actually reference prostatectomy....principle applies.

ncbi.nlm.nih.gov/pmc/articl...

[pilot52]

With a libido decrease there is a direct relation to bank account increase..see my bio...Blue Skies....Keep the work out going ,

[jfoesq]

You didn't ask, but may wish to also consider taking the medicine, Tamoxofin or having your breasts radiated to prevent "manboobs". Many men, maybe all, develop gynecomastia as a result of ADT. I did and was unaware of the above-mentioned treatments when I began ADT 10 years ago. I guess I am vane, but I refuse to take me shirt off in public anymore because of my "manboobs".