ADT. Afraid of it

Chambee, I am 77, G9, CR, advanced PC, had 13 months of ADT and Erleada and RP. I had the side effects that you mentioned but they were not terrible and I handled them fine. My PSA has been .01 for 2 years and I have been off of all meds for 17 months. My cancer will probably return and when that happens I have been advised that I might be put back on these drugs. Cancer and cancer treatment is certainly something to fear but I learned in life and the army during the Viet Nam war that you have to control your fear and do what you gotta do to stay alive and get over it. Best of Luck to you. You’ll do fine!

I was one 4+3, one 3+3, Decipher 0.86, PSA 7.8, PSMA PET showed confined to prostate. Age 68 fit and otherwise healthy. Started ADT with Orgovyx Dec 5th (on it for 6 months), finished 5 SBRT (with a focal boost to the dominant tumor) sessions Dec 28th. I hit the gym 3 days a week for an hour and a half, walk 18 holes twice a week. Purposely lost 8 pounds prior to starting the Orgovyx. I watch calories and sugar content.

I have gained two pounds. I have not had mood swings. I have not lost muscle mass or energy. I started getting hot flashes at day 42. Typically 1-2 at night that really are not a big deal.
Saw my RO for my 3 month post treatment PSA. He walks in and while shaking my hand says " I have no idea why you are here in the cancer clinic. Your numbers could not be any better" My PSA was 0.09.

I have no side effects from the SBRT and went on a two week SCUBA trip, two weeks after completing the SBRT.

I lobbied for Orgovyx as it knocks testosterone done quicker, does not cause an initial testosterone spike, has less cardio toxicity, has a quicker recovery of testosterone when treatment is over, and being a daily pill gives me some modicom of control on this rollercoaster ride.
If you tolerate treatment and ADT anywhere near well as I am, you have absolutely no worries. Compared with so many other cancer patients this has been a cakewalk.

Stay Strong Brother, you got this.

I had 3 years of ADT. Apparently some people tolerate it better than others. I was fairly lucky. The side effects weren't fun, but they weren't horrible, either.

My only regret is that during the ADT I didn't work out much. I was tired, so I took naps. I should have continued to lift weights, because I did lose a lot of muscle strength during treatment.

I have since resumed lifting weights (stopped ADT a year ago), and I have regained my strength. If I have to go back on ADT (which is likely, because my Gleason was 9), I'm going to make a strong effort to continue lifting weights to maintain strength.

I've been on the ADT for one year. no noticeable mood swings, as for weight gain, I enjoyed putting a "few" pounds on , suppose to monitor now, lol. The fatigue is something we have to push through. To be honest I'm not sure what med gives me what. As for depression, I"m guessing we all step in that hole from time to time, have to fight to get out of it. I wish you the best and to me, no side effect is worse then the cancer.

chamblee54
I found this video compelling https://www.urotoday.com/video-lectures/prostate-cancer-genomic-classifier/video/2486-the-benefit-of-adt-treatment-intensification-with-radiotherapy-in-localized-prostate-cancer-dan-spratt-and-amar-kishan.html
but I understand your feeling. Not an easy decision.

Well, the forum lacks more detail on your clinical data and history, so for now, I'll comment on your concern with ADT.

Yes, there are side effects, I've been on it twice.

Jan 17 - May 18 as part of triplet therapy (Lupron)
April 23- Apr 24 as part of doublet therapy (Orgovyx)

Side effects, yes...

Hot flashes
Fatigue
Muscle and joint stiffness
Genitalia shrinkage.
Weight gain

These were "mild." I say that because they did not interfere with living. I went on vacations, rode my bike, worked, went to concerts, celebrated birthdays, anniversaries, holidays...

I did not experience a loss of libido nor depression., why, I can't say with any scientific basis but throughout those days, weeks, and months, I exercised - most days trips to the gym, indoor bike or elliptical, weights, swam, played pickleball or basketball, rode my bike outside, did a lot of yard work and gardening.kept an eye on my diet.

The hot flashes were the most annoying. There is medical assistance for those, I chose not to and dealt with them (never ran my car heater in the winter...!).

I've been on this journey 10+ years and on these forum for most of that. The number of times men have reported severe mental issues with ADT has not been that common though it happens. Think statistics and the Bell Curve, depression may be one or two standard deviations o the left of the mean.

It may be that your medical team recommends ADT for a defined period, 6, 12, 18, 24 months. Rarely longer though if you are resistant, then generally continuous.

It may be that radiation is an option. I know, the side effects...look at my clinical history:

SRT 39 IMRT 70..3 Gya
WPLN 25 IMRT 45 Gya
SBRT 5 x 8 Gya

Side effects, nada.

Orgovyx may be a possibility, it generally has a lower side effect profile than Lupron though others have reported challenges with their doctors prescribing it, their insurance companies approving it or financial toxicity. The side effects are still there, trust me though I can only give you a qualitative not quantitative answer, they may be "less severe..."

As with any treatment decision, you need to do a cost-benefit calculation and decide.

I'll close with this, I've peeked behind the door of dying by, not with prostate cancer, no thanx.

Kevin

I just finished 18 months of ADT. I wanted to be on oral therapy (Orgovyx) as it gives better steady-state blood levelsz as a pharmacist, I dislike long-acting injectables (too many ups and downs). Fatigue-none, hot flashes (1 or 2 per day), libido-gone, fat- distribution (some because I did not join a gym), PSA-went to zero. In all, not awful but it probably will extend my life.

I completed my treatment in May 2023. I had 5 doses of high beam Proton radiation and received a total of 3 shots of ADT. I started as Gleason 4+3/7, stage 1 intermediate. PSA 5.9 The first two shots were the worst and the next day, I worked but felt really bad. A month later I got the third, then the radiation. I really had no real bad side effects, most hot flashes, and I didn’t have that many, I didn’t know I was having one til after the fact. The worst was being tired. I continued to work and was “normal” for half a day, then tired. But I pushed thru and made it. No weight gain and sexually no change, other than dry orgasims. Overall, I good but the shots last longer than the Doctors said, til after the fact when I mentioned at one of the follow ups. My current PSA is at .23 and both Doctors, I have a surgeon, who gave the shots and ruled me out of surgery, and my Oncologist are both happy where I’m at. In fact my Oncologist has shifted me to see his PA from now on. I’d say do the ADT and ask questions. Yes, the side effects are concerning but so is having PC. You can do this, stay strong Brother. Oh, and I just turned 60 in January.

Your statements are exactly what I m doing, but still on ADT. I have rubber bands that I put a knot in and close the door in the band. This keeps my prune skin arms strong- unloaded Mulch yesterday. NP. Taking a nap gets me thru rest of gay. Gleason scores9-10. Metasticised to pelvic lymph nodes, already had RT. Last year. Just gotta make yourself do stuff and not lay around saying POOR ME. Lol

I've been on ADT since 2021. Stage 4 oligometastatic prostate cancer (so I'm on ADT forever, basically).

I manage the weight gain with lifestyle changes. The mood swings are annoying, but calmed down after a couple of years (cognitive-behavioural therapy can give you tools to cope). The hot flushes are challenging, but aren't as frequent for me now. The loss of (a lot of) body hair on legs/arms/chest and the gynomastia take a bit of adjustment. Sexual dysfunction may or may not be important to you and your partner (there are meds and devices to help).

To balance that…

Still being alive this beautiful morning: PRICELESS