ADT side effect progression. - Prostate Cancer N...

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ADT side effect progression.

Ernbud
Ernbud

Started lupron and bicalutimide 3 days ago. I’m aware that everyone reacts differently so my question is for individual experiences. How soon did you start side effects? What side effect was first and then the progression from there? What effect was second, third and so on?

27 Replies
Hidden
Hidden

Have no fear Ernbud! You can possibly skate by with few SEs.? Some do ? Enjoy none for the moment. When and if they appear you will know it . They get back with us . No SE’s enjoy today !

Ernbud
Ernbud in reply to Hidden

Thanks for the positive vibes! When they show the percentages of guys that have the side effects they are never 100% ! I’m perfectly content to be in the side that don’t! 😁 Good vibes right back to you!

Hidden
Hidden in reply to Ernbud

You’re on the right side of it.😂😷

I had no libido within a month, lost most of my body hair around 4 or 5 during radiation. I get warm sometimes but I can say pretty confidently I haven't had a hot flash. A small spot on my back gets warmish on rare occasions maybe that's my hot flashes. My frank and beans shrunk around the same time as body hair disappeared but they were starting to get in the way from gravity so no problem. I started feeling cold more than before around month 3 or 4 and Raynauds Disease started around the same time but that could be a result of my cycling. My white blood cells started showing declines around month 4. I think that covers everything.

Ernbud
Ernbud in reply to treedown

Thanks for the reply!

Hi Ernbud

I had a 6 months Eligard shot 15 weeks ago with at the beginning a 30 days Bicatulamide short run.

Side effects? Understanding that we all have different age, stories and baseline health status, my experience is mine but if that helps you, here it is

I has a relatively moderate degree of many side effects that come and go.

In the very first days nausea

Dizzy spells, ringing in my ears and head aches for a few weeks

Hot flashes started after a month and a half- half a dozen per 24 hours nothing major

More recently muscle and joint pains

Some negative thoughts ( not my type usually)

Libido went out the door slowly but surely along with a loss of Mojo- I don't feel as doggedly hell bent determined to push my limits as before unless I'm really priming myself with self talk.

But that is a matter of personality mostly I guess and we are all individuals

Again all these SE in moderate quantities. Most days are good.

The exception being a 3 days stretch at the 6th week ( it looked like food poisonning to give you an idea...

Hope it helps

If having a hard times, I found it helps to focus on very small time increment. Along with exercise even when you don't feel like it and some mindful meditation

No17

Ernbud
Ernbud in reply to No17

Thank you!

Sweats for the first year.

Fatigue and flushing especially at night. Was very disruptive to sleeping and lasted almost 11 months which was 6 months after the last Lupron injection.

Ernbud
Ernbud in reply to mark1952

Thanks for the info!

I had my six month Lupron shot at the beginning of March this year. I think the first thing I noticed at 1 month was the greatly increased sense of smell. Then a slowly decreasing libido. I have had hot flashes, but most of the time they are very mild and sometimes I am not sure I am having one. My beard growth is way down. My skin has softened slightly. The ONLY negative I have had was it making a side effect I got from the prostate surgery worse. I do now cry at the drop of a hat. Some of the effects come on very slowly so I am not sure I could number the order in which they happened. I don't want the osteoporosis or gynecomastia that comes with no hormones long term, but for me it has been pretty much a positive experience, not negative so far.

Ernbud
Ernbud in reply to Shorter

Good to hear it’s going as well as it is for you!

As I recall, hot flashes and fatigue at about 4 - 5 weeks. Then loss of libido . Moodiness/crying a bit later. Aches and depression at 8 months.

Hot and cold flashes. Gynecomastia. Let me guess, your doctor didn't mention that possibility. Tamoxifen might prevent the problem; ask your urologist about it. This has been discussed on this site. Research it. Doctors treat the disease, not the person. Not their problem if you sprout boobs.

Ernbud
Ernbud in reply to WSOPeddie

Actually my urologist did discuss it with me, not sure I want another medication with it’s own side effects. Think I’ll wait a month or two and see how it’s going. Thank you!

AlanMeyer
AlanMeyerModerator

I was only on Lupron nominally for four months (one 30 day and one 90 day injection.) My testosterone recovered after about six months total i.e., six months after my first injection.

Side effects began after about a month, I don't remember for sure. Noticeable side effects included loss of libido, hot flushes lasting about one minute per hour, reduced athletic ability in spite of regular exercise, and at the very end, joint pain in fingers and toes. The loss of libido was pretty complete. I could look at a beautiful woman and recognize that she was beautiful but had trouble remembering why I ever thought much about that. However, in spite of the loss of libido I was still able to have sex if I forced myself to do it. I was always happy when I did.

I also had an unnoticeable side effect. My doctor did a panel of blood tests and said that I had elevated liver enzymes that were potentially dangerous. I didn't feel anything from them but we stopped the Lupron because of them.

The hot flushes were only a bit bothersome. They reminded me that the drug was working. The loss of athletic ability required consistent exercise to counteract. I couldn't fully counteract it but I was able to get through an average day without feeling exhausted and had no problem taking 5-6 mile walks in the hills with my wife. The finger pain was a nuisance but I got rid of it with lots of hand exercise plus alternate hot and cold water treatment.

All in all, I disliked ADT but I adapted to it. I liked it better than cancer.

Best of luck.

Alan

Ernbud
Ernbud in reply to AlanMeyer

Isn’t that sad that you have to force yourself to have sex, these medications really do try to turn you into a woman!😊

AlanMeyer
AlanMeyerModerator in reply to Ernbud

Hopefully, most women who look at men feel something more than most men feel on androgen deprivation. We should all be conscious of that and force ourselves so that our wives aren't deprived. The good news is that, in spite of the ADT and the lack of motivation, and to our surprise and delight, sex can still work.

Ernbud
Ernbud in reply to AlanMeyer

Thanks, that’s good to know!

AlanMeyer
AlanMeyerModerator in reply to Ernbud

I agree. It is good to know. A lot of guys have no libido and so they don't even try. I think that's a mistake. Try to do what your wife likes most. When I did that it not only got her aroused, it got me aroused too. It was, as they used to say, a two-fer.

Sex ain't the same on ADT. It usually ain't the same after radiation or surgery. It it ain't the same when we grow old. But, so far, it always seems to repay the effort you invest in it.

Shorter
Shorter in reply to Ernbud

My prostate surgery took away any possibility of sex because it took away almost the complete length of my manhood. Hence my online name. It did not take away the much shorter erections or strong desire. The Lupron took away the desire, so that made it somewhat positive for me. The surgery basically turned me into the woman.

In the end, it comes down to how much you want to live!

dadzone43
dadzone43 in reply to Shorter

All of us share to some extent your fate. Question remains: is it your penis that makes you a man? Or, is it your creative nature to devise other ways to be sexual? A penile implant will give you an erection. Your brain is your most powerful sex organ. How will you use it?

Shorter
Shorter in reply to dadzone43

I thank you for your reply, but have researched extensively for 2 years and even been to an implant doctor. An implant will not fix my condition. I will not go back over it as I have discussed it on here before. So much was cut out of my urethra that it will not stretch out the amount required. It causes me to experience pain part of each day because of the tug of war going on inside my body. This did not stop me from being a man. I still have a wife and children whom I love very much. What was done to me probably borders on malpractice! From what I now experience, a sex change operation might be an upgrade.

Got it. Had similar aggitation with my urologist after RARP. To no avail. And several of the men in my support group, too. Wish you all the best, long remission and plenty of blessings to count.

No need to recite all of mine because they pretty much mirror what others have reported. But one thing I'd like to add is that you may experience side effects that are not generally recognized by the experts. For instance, I developed swelling in my hands and feet along with painful, stiff hands with several fingers "triggering" if I attempt to make a fist or grasp anything tightly. I've also developed hypertension, which I'd never had before, and have become so tight in my hips that I can barely cross my legs. I've given up trying to get any insight on these from specialists who have greeted my reports with skepticism. The best I can do is exercise, eat right, and just soldier on until the ADT is done. It can be a lonely experience, so lean on family, friends, and fellow travelers like those in this forum.

There's so much wisdom in the replies you have received. I learned a lot reading them; I was wondering why I have been tending to cry.

After five months, my side-effects have been mild so far. Most have been discussed by others. I have had some alarming shortness of breath. I'm in pretty good shape, so I was shocked when I couldn't talk while walking with family members. I'm managing this SE just fine.

The worst side-effect is that my knees are weak and I can't walk or stand for too long. I have also developed a bit of a paunch by adding about seven pounds, but I think the Covid lock down has been a contributing factor.

My wife and I are both surprised that sex is still good. Different, but good. All the advice you have gotten on this is right on the mark.

All in all, based on my research and my doctor's concerns about "putting me through this," I was expecting a really bad time. But every day has been a blessing and I am very grateful.

I had a 6 month TrelStar shot and Bicalutamide in June. Dr also prescribed Effexor to help with hot flashes. The hot flashes started right away, 6-10 a day. They have settled down to 4-5 a day. Pretty heave fatigue within the 1st few days. If I push through it, I can function. If I ride the couch, the energy never comes back. I do have a noticeable drop off in the amount of heavy exercise / moving heavy things before full exhaustion sets in. However, all of this beats the alternative of an early “expiration date” !

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