Hi again
I have read here and heard from others about aches and pains as a side effect of ADT ( Lupron )
I seem to be having a great deal recently - though I have been on Lupron for 30 + months and have had other sided effects - fatigue/endurance/sexual dysfunction this is new. I have a Dr visit at the end of Aug but I thought I would see what anyone here had to offer about their experience with this
thanks
and Best to you all
P
Yep, classic ADT side effects. Luckily you have not mentioned night sweats, hot flashes or severe mood swings and/or depression.
All in all, you’re doing better than most.
oh yeah - I have all that too . grrrrr though the hot flashes have mostly s lowed down and therapy and a small dose anti-depressant ( I call it attitude adjustment ) seem to help - though sometimes I find myself letting out a big sigh ... and then saying - " well you are alive and at times enjoying life. As I have stated before on this site - this i the toughest thing I have ever had to deal with bit at this time - I'm dealing
best to you
P
I have been on ADT for 17 months. For the first 12 months I was in a clinical trial, taking a new oral drug. It effectively lowered my testosterone to around 12 and PSA was undetectable. All of the expected side effects were there although they were minor and tolerable. In March the trial ended and I went on monthly Firmagon injections. Hot flashes, joint pain, and depression have been dramatically worse. In July I was switched to Eligard, and the side effects are still intense. I started taking SAM-E about a month ago and the hot flashes have reduced in frequency to about 1 per hour, but they are still intense. In about 3 weeks I will enter a clinical trial for a new drug that is intended to reduce hot flashes. I can understand why some men give up on ADT.
Sucks, doesn't it?
I've written about my reactions to ADT. Despite what I had read in preparation (read "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and their Loved Ones"), I had no idea of how I'd react. I feel like a poster child for the side effects of ADT. Lucky me. LOL
Firmagon for 1 month and then three 3 mo injections of Lupron/Eligard. Brutal shit.
In no particular order: wt gain (yep, as one article said, "you'll feel like - and may look like - a tub of butter") in butt, gut and thighs; higher BP and more BP meds; probable bone density impact; night sweats/hot flashes about every 1.5 - 2 hrs (some intense, others momentary and shallow); genital shrinkage (I've read that testicles may actually disappear and penis may shrink 1" or more) - I now have grapes for balls; body hair loss but increase facial and head hair (go figure); join pain (Aleve/Advill seem to help); increased frequency and urgency of urination and bowel movements; and, of course, the emotional roller coaster of emotions - depression, despair, grief (think about all of changes and the loss of function, appearance and mood), crying for no apparent reason, incredible fatigue, zero sexual appetite, and so on. All of this to "starve" but not kill the beast. Not sure I understand how that works but so be it.
Despite my best efforts at wt control/diet, I've gained 10 lbs. Not pretty. Muscle mass worse.
The only thing that seems to worked for me is exercise (and I am no gym rat). Machines - resistance/impact - 3 days a wk; and cardio/elliptical, treadmill, bike 2-3 days a wk. I think doing this gives me some sense of control. Alas, I see no physical change in appearance as a result (maybe I'd be in even worse shape if I didn't exercise. Dunno). But, it's a small price to pay, I guess.
"Last" (god, I hope so) injection was beginning of May. Docs told me it may take 6+ mos to feel better. They were non committal about what to expect (will I lose the wt? Genitals return to pre-treatment size, etc.?).
Oh, if you're sexual self needs a boost, there is a study being done at U of MN, "Restore." Daryl has written about it here. I joined and was provided with assistance in the form of pump and pills and emotional support. Worth a look.
All of this is a way of saying, there are many of us here who know exactly what you're going through; you're not alone. Your reactions are perfectly appropriate. I'm sorry that you're going through this. Certainly isn't anything any of us was prepared for.
Hang in there.
EdinBaltimore
relugolix ADT
Post ADT treatment
Hello to all from someone with RP, ADT, and IMRT
