I hate Lupron

Mattamx,

I have hesitated in contributing to this thread because my story is very diiferent to most of those posted here.

This started life as a vent thread - and we all need to vent at times - so I didn't want to destroy the mood by belittling the SE's felt by most, but quite honestly I haven't found it to be a major problem.

Now I have suffered worse permanent SE's from my surgery and RT than most so I do know what it is like to be severely affected, but ADT has not been an issue for me, and I have seen others report similar comments.

I had 12 months ADT before having a break and am now back on it. During my initial stint, I most certainly suffered lost libido, had some annoying hot flushes, lost a bit of strength and gained a little weight. However I did not have any significant fatigue, loss of motivation, brain fog, or any of the other problems people have reported. From my perspective the biggest problems were the weight gain and loss of strength - lost 20 yards driving distance on the golf course!

During this time I was also dealing with major urinary problems and I think I coped with that surprisingly well. ADT didn't reduce me to a whimpering mess.

The benefit was that was that my PSA reverted to <.01, so absolutely no regrets on my part.

It took about 6 months after the last infusion before I got back to normal, and I did, libido returned, strength returned, flushes stopped.

When my PSA started rising again, I knew I was headed for a return to ADT and that did not phase me one bit. In preparation for that I started a light weights training program and modified my diet - mainly just portion control, and limiting my carb intake, but at 72 years old and a limited longevity, I am not going to make my life miserable just to add a a couple of months. Nonetheless I have already lost a couple of kilos and am monitoring my weight very carefully.

I am only 5 weeks in and I have already lost libido and am getting mild flushes, but so far no weight gain and driving distance remains ok, but it is early days.

I know I have been lucky, but just wanted you to know that it is not necessarily all doom and gloom. Some of us get out of it relatively unscathed.

All the best

Chas

I try to keep my worries back burner and live a happy life, but yesterday, this thread got me down. Without a word to my wife, when I got home from work, she was 'ready.' We f-ing rocked each other's worlds.

Later tonight, we talked at length, and I mentioned this thread. Now I know we are only a short journey in this here deal-ee-o, but crap, after all the rock star sex we've had over the years, and I would say we'd go toe to....er, toe with anyone here regarding epic sessions...missionary, doggie, cowgirl, anal, every friggin digital, oral combo you could think up, (no swinging), every room in the house, our relationship still isn't defined by our sex life. It's built on friendship, family, spontaneity, enjoying each other's company. We lived in Europe for 12 years, been around the world, literally, have beautiful children, super close family, garden, cook, dine, fine wine, enjoy opera, explore and remain curious about the world, universe and life in general.

The very real possibility, even likelihood, of ED and incontinence were what I signed up for when I opted for surgery, making my current functionality that much more of a bonus. Even still, with the likelihood of ED with Lupron, I'm probably more worried about growing man-boobs =)

Seriously, mental acuity is the main concern for me. Professionally speaking, I am now dealing with very highly educated, talented people, and deal with millions of dollars, face internal and external clients, and am responsible for contract acquisition. To keep sharp, I now do mental counting/math excercises, be sure to practice scales on at least one musical instrument, eat right and excercise.

If we never had sex again for the rest of our lives, yeah, it'd suck, but man, I'd have to say we've had quite a run, and I'd have little in the way of regrets about it.

Tom,

Different men react to Lupron in different ways but, generally, the fatigue and brain fog are not severe enough to make the activities you mention impossible. The most common brain-fog complaint we see here on the forum is memory problems. You may need to keep yourself organized -- write things down, keep files of the important stuff -- at least until you see how the Lupron affects you. As for the fatigue from ADT, it is a sort of a background thing -- always there but never that severe -- felt more as a lack of motivation than as difficulty doing stuff. Once you get yourself moving, things aren't that difficult, but convincing yourself to get started can be a struggle. Exercise helps. So does keeping busy.

Be sure to tell your doctors about any side effects you might run into. Many of them can be minimized with treatment.

Good luck. Keep us posted. We'll be here.

WifeofPie said...
Thanks everyone. Todd - thank you for that perspective. Sometimes even when you know the science behind something, it helps to hear an actual real human person put their spin on it

mtnwife-that is spooky that our timeline was so similar. Because we still have kids at home, a lot of our "off" time is together doing stuff as a family. We have separate hobbies here and there that take us away from each other to a degree, but we're still focused on raising kids too. That said, I'm glad to hear that you've been able to maintain active hobbies on your own when your hubby isn't up to joining you. I sing competitive a capella music (nerdy, I know), but I was kind of on a break from it when hubby was diagnosed, and I haven't felt moved to get back into it (mostly because in an ensemble, other people would be depending on me, and I don't want to be beholden to anyone else right now)...but...when radiation is over, it might be good for me to get back to it, because it's joyful and would probably be good for my heart and soul.

peanut and everyone else...thanks for your contributions to the thread. Any cancer is scary. Just writing the posts on here has made me realize how stressed I've been about the balance of survival vs. toxicity/quality of life. Not sure I feel I have all the answers, but at least I know I'm not the only one.

Most of us had no idea what was in store for us when we embarked on this adventure and I believe I have created several threads on the QOL issue and have heard a lot of opinions. Sadly, the change in personality is something we have no acknowledgement of and it's something that does not come to light until our T levels return(if we're lucky). I said this in another thread, the very monster that I harbored during my ADT days has come back to haunt me during my wife's menopause phase....lol

You might have emotional changes, I'm the typical guy with little display of emotions but there were a couple of times when I just let it loose. No reason to fret, everybody seems to have a different experience.

Skylark72 said...
Ready to start Lupron and Casodex. What are these changes going to be? I know the physical ones. But how does it change you personality wise? Am I going to be watching The lifetime Channel and crying over stuff?

Ummm.... yes? It's weird, but I did certainly find tears happening far more often than ever before in my life. One term I heard was "loss of stoic expression". After 3 years on ADT I found that this expanded emotional dimension became, if not always pleasant, at least enlightening. I actually did enjoy some tear-jerker stories, and have come to understand why my wife has always liked watching those things. It's like exercising a muscle you didn't even know you had. My wife was very surprised at my interest, saying, "You used to give me grief about watching these movies!". True, I did. Not anymore.

If it spins into depression, which is possible, don't be afraid to talk to someone about it. My GP was helpful, so it didn't take a psychiatrist to figure it out. Anti-depressant drugs can aggravate some of the hormone therapy issues, like fatigue, weight gain, and sexual side effects, so they're only to be taken on if needed.

Your mileage may (hugely) vary!

Tomhw Skylark and others.....I only had the 6 month Lupron ....but was able to handle ALL affairs for my wife( Dementia) and myself ....no noticeable brain fog ...may have been from my self meds ?.....but a little weight ....lovin that ....and HOT FLASHES--few aches and pains towards the end....took 3 months for hot flashes to go away after end of Lupron in Nov.2016. Very doable but remember so different for so many....for me -6 mo.shot, all in all easy.......long term .....nasty I`m sure...to date ...I have sore Moobs....and about 70% of my old self sexually .....good luck guys! ...David

VaporT.....what a great outlook !.....Right on .........David

I guess maybe I need to throw my two cents into the mix. Yes Lupron sucks. I both love and hate it. I got my first Lupron injection at the age of 42. I am 56 now and have been off of it 24 total months in the last 13-1/2 years. I just ended a treatment holiday a few months ago.

At the time of my diagnosis who is lucky to have a wife who understood that exercise and just being active are the best ways to fight the side effects of hormone therapy. She bought me a bike and she bought me a kayak. She made me use both of them. When all I wanted to do was sit on the couch and feel sorry for myself she made me get up and go for walks in the woods. She convinced me that I was more than my penis which as any guy will tell you is a hard thing to do. That was the biggest problem for me. I couldn’t get out of my own head and my insecurity in my masculinity or lack there of put up barriers to physical intimacy. It took years to tear down those barriers. Once I was able to embrace emotional love and get out of my own head my wife and I were able to once again work on physical intimacy. I will not say that our sex life is all that we wish it could be but for two people who work full-time we do OK. You may not have been given an end date for hormone therapy but you will have one and most likely life will return to normal for you and your husband. I envy you. It could be far worse. Your husband is one of the fortunate ones who may one day be able to say, I have been cured of prostate cancer. Unless there is a tremendous advance in medical science soon I may never get to see that. Hot flashes fade sex drives can return fatigue can be managed with exercise as well as depression. I wish you and your husband the best

We never use the term 'hormone therapy'. We always say 'androgen deprivation'. Semantics, I know, but I think it helps those well-meaning 'at least it's the good cancer' folks understand that something is lost. We don't talk about ED or incontinence to most of the folks in our lives. It's just not done. But, I never miss a chance to explain how some forms of PCa are deadly and will cheerfully kill you. And even if it doesn't kill you, it will irretrievably change your life.

Donna