Lupron Side Effects

[JLINSCHEID]

The conversations here have been very helpful; so thanks everybody.

I am curious about how quickly others who have had ADT (particularly Lupron) have experienced side effects. I am on my 11th day following my first shot. I felt a little sluggish at first and have had one or two flushes that may have been hot flashes. I have not been horny like I was previously (but wasn't sure if that was a side effect or due to the placebo effect). I did check out a little porn just to test things about five days in and no not the usual response there either. But in the lst several days I had a coupld of erotic dreams and awoke with a little swelling "down there" but not any effect when I try to stimulate myself. Otherewise, I feel pretty much the same as before the shot so far, but I realize I am not very far into it. The shot was a 30-day shot, if that makes any difference.

Some background: My canacer was diagnosed in 2014. I had surgery then. My PSA rose slowly over time but jumpted from 1.9 to 3.0 this last quarter. Bone scans are clear. A CT scan in inconclusive; there my be some activity in the prostate bed. (I'm not a candidate for radiation due to a history of Crohn's disease and immunosuppression following a liver transplant.)

Just curious about other initial experience witgh side effects.

[spencoid]

It may be possible for some to have minor side effects from Lupron but I think that is rare. It completely eliminates your testosterone. Testosterone does many things and without it you will be a very different person. I was on Lupron for over a year. I had severe hot flashes, general weakness and had a close call with some accidents before I understood that my sense of awareness and many other things I was used to had changed and that I needed to be very aware and extra careful. No more casual climbing of ladders etc.

Sex, what is that? I completely lost interest in sex. I could still appreciate the aesthetics of a beautiful man but had no interest in anything more than looking. I was completely amazed at how different a person I was for that year. I had Lupron in advance of and following radiation treatment so it lasted only about a year. It took another year, almost, to be back to "normal".

[Hidden in reply to spencoid]

No t is devastating but we choose to live, rather than do nothing .Im clumbsy now accident prone and in effect fragile compared to pre-APC .Good luck in your journey!

[JLINSCHEID in reply to Hidden]

Yes, indeed. We choose to live.

[JLINSCHEID in reply to spencoid]

Thanks for the heads up. So far, I don't feel terribly different, but it is good to know that I need to be watchful. Also good to be prepared for what, I assume may come on gradually over time.

[MJCA]

Hi. I was diagnosed with PC 11.5 years ago. I have had 3 rounds of Lupron. My side effects were much stronger the first time around. I had terrible night sweats, hot flashes, fatigue, I lost muscle mass, I would cry for no reason. I was on the 4 month injection; it took a good 6-8 weeks for my libido to go away. It took a long time for it to come back. Not the best, but compared to other forms of chemotherapy...not too bad.

[JLINSCHEID in reply to MJCA]

Interesting to hear how things progressed ovder time. I wasn't the most agile of people before; so we'll see how things progress with me. I am sharing all these comments with my husbnd, who will help me remember to careful and watchful as we proceed. He has already had a lot of practice, since I have a very bad cataract in my one good eye and have had to wait a while for surgery (which should happen soon). He has become adept at watching out for me. (He is getting lots of practice in the "for better or worse" stuff.)

[JimVanHorn]

After 5 and a half years on Lupron (now generic Eligard) I notice people differently. I tend to talk to men and women and listen to their inner feelings instead of just checking them out for how they look. So I really enjoy my life being a more "feelings" person. Side effects of Lupron become less with time and my PSA has been 0.00 for 5 and one half years now. I have gained weight mostly because of other diseases I have like heart disease, I am 72 years old. Let me know if you want to hear about AR (Androgen receptors) in the prostate cancer cells and how that works. Sex is now on a more feelings level and is still very meaningful. I cry at the drop of a hat, because estrogen is now my dominate sex hormone and I can not stop crying by just "toughing it up", because there is no testosterone. Remember women have 70 percent estrogen and 30 percent testosterone, I have all estrogen now so I cry at movies and in church now. I go to MCC church because of spiritual needs dealing with my destiny and helping with depression. Staying positive helps a lot. Keep truckin'. Jim

[JLINSCHEID in reply to JimVanHorn]

Thanks Jim. So helpful to hear of your experience. It makes me less anxious about what is to come. Since I already could be fairly emotional (getting choked up and crying at hymns in church, certain movies, etc.) maybe that won't seem like that much of a change . I am interested to know about Androgen Receptors, if you have information that would be helpful. Thanks again for responding to my post.

[JimVanHorn in reply to JLINSCHEID]

Hi JLinsheid, Researchers found out that a cancerous prostate cell can not form the double helix structure for the cell to divide, forming tumors, when there are no androgens. These cells have a area or spot that is sensitive to androgens (male hormones) and without the androgen they can not divide. So what can still happen is that single cells may break off from the prostate and go into circulation (metastasis). They have affinity for bones near the pelvis and attach to the bone. Then they sink into the bone leaving a pock mark on the bone where they are stuck until they die, unless there are androgens and they start subdividing again. So the bone density becomes lower and your oncologist will help you with that. So Lupron fools your pituitary gland (at the bottom of your brain) telling your body to not produce male hormones (if you are a man) and tells women to release their eggs (follicle stimulating hormone). You have many male hormones in your body for example in the adrenal glands on the top of the kidneys, as well as the testes. So Lupron wipes them all out and now you are driven by estrogen. As long as the pituitary does not figure out that you are fooling it. So for some people it works better than others, plus we all have different types of cancers in different locations in different sized prostate glands. We are all different ages with other diseases present, so you can not equate one person's experience with your own. Fer example I have diabetes, heart disease, kidney disease, sleep apnea, as well as prostate cancer. But I am 72 years old! I must say that at this time I have no really bad side effects or problems from my cancer therapy for 5 and 1/2 years now. So good luck, stay healthy, and live a wonderful life.

[JLINSCHEID in reply to JimVanHorn]

Thanks so much, Jim. This is very helpful. While the doctors explained that Lupron would stop my body from producing testosterone and that the cancer needed it to grow, this was both more detailed and in plainer language. A great help. John

[PrettyUnhappyGuy]

The first month of Lupron for me was easy. I don't want to scare you but don't want to be dishonest either. After that, it has been a VERY tough road. I'm now four months in and hate the person I've become. Every day I feel the same grief I felt when all of my friends died during the AIDS epidemic, but multiplied by 10 and for no reason. I sit in a chair and just stare, sometimes for two hours or more, because I sometimes can't bring myself to do anything at all.

I haven't had hot flashes but have lost 40 pounds in two months because I have no desire to eat so I don't. I do force myself to go to the gym and have held steady in my workout but have lost strength. I go to the gym at 4 or 5 AM so it's empty because I really hate how I look now.

I sleep, at most, 2-3 hours a night. Even 10 mg of Ambien AND a benzo together only give me 4-5 hours of sleep max but the doctor doesn't give me enough to do that every day.

My mind is also scattered. I had to have my computer read me this message before posting it because I make so many mistakes--forgetting words, forgetting names, etc. which never happened before Lupron.

I've tried to maintain a sex life with my husband and that went OK for the first 2-2 1/2 months with the help of 100 mg of Viagra. Last Saturday we tried again and I could only get about 50% hard and got really angry to the point I was trembling and he put his body on top of me, stroked my hair, and told me "just relax, it's OK" and I bawled my eyes out for about half an hour because it ISN'T OK. I'm embarrassed about it today and probably won't try again for awhile, but will take care of him if he needs it since he's been a great caregiver.