Lupron

For those of you that had Lupron injections.
What is the real world side effects....

I had an 18-month sentence on Lupron. The most bothersome for me was the hot flashes and a general feeling of being 15 years older. The "feeling older" part crept up on me as time went by--I just felt sort of creaky. The hot flashes were really obnoxious. Oh, and I remember crying for no reason at all a few times.

Completely losing your libido is really, really strange, but I think the real world implications of that are based on your relationship with your wife/partner. In some ways, I found it kind of peaceful, although of course I was rather glad when it returned.

How long do you plan on being on ADT? After a few months, I was back to normal re all these SEs.

Lupron is in effect chemical castration. Your body reacts to it as though you have been castrated, which was the treatment used before lupron was developed. It turns you into a eunuch, simple as that..Depending on your age, if the ADT is stopped at or before 2 years, one can slowly recover from the effects of the drug, testosterone levels returning to normal levels..But if you are over 60 or on the drug for 3 years or more, recovery becomes less certain....

For hot flashes, use a fan in your bedroom. I go from hot to very cold some nights. Trying soy milk now too.
For fatigue, fight it with strength-nothing better. That means work out as many days as you can. Cardio + weights. If you can't make a workout then at last do a long vigorous walk. Workouts help with the weight gain. They make me feel stronger too. Lupron doesn't make me go to Handels Ice Cream tonight so food choice determines your weight gain.
For memory issues I forgot how I fixed that. Seriously, try BrainHQ or something similar.
For the "bad days", I stay in bed longer and go to work late. And come home early. I listen to my body when it wants to rest.
Her's hoping you have less, not more side effects.

Will be finishing up my 18 months of Lupron in October. I have experienced a wide variety of SE's. Most prevalent are severe fatigue and significant weight gain. The two may go hand in hand. Sometimes it feels like I'm trying to drag tree stumps around. The fatigue issue seems to come in when I am just trying to relax, but sometimes it is difficult trying to get through the day. I haven't had any issues while driving or when keeping busy. Other less debilitating SE's are, breast enlargement and sensitivity, joint pain, hot flashes, chills, more emotional. I don't know if this is related to the Lupron, but I didn't have an issue with leg cramps before going on it. Since I am single, loss of libido is not a big issue. I can get thru everything but the fatigue and weight gain. I try to get some walking in but it's difficult. BTW, My walking issues are compounded by knee issues. Arthritis, bone on bone contact and torn meniscus in both knees. Certainly doesn't help when trying to get some exercise.

I've been on Lupron for the past year and a half and was just released last month. Lupron only, no Casodex. My six month injections were Jan '17, July '17, and Jan '18. Assuming a linear six month half life, there should be only 50% of it still suppressing my testosterone by the end of this year, 25% next July and 12% by new years 2020. That sure seems like a long time. It's the gift that keeps on giving.

The downside is that I really won't have a meaningful PSA read for another two years from now. I've heard that at my age my T level will never return to what it was before starting HT (my T was never checked... I blame my doctors, especially the one who removed my right testicle some years ago).

The first month on Lupron was marked by the Lupron "flare" for about ten days. It was like I was on some sort of sexual speed. Then a month later the hot flashes started, and hit me pretty hard. I would have to excuse myself and go into the restroom to remove my shirt and fan myself. That still persists today, mostly in the evenings. I became rather emotional, but part of that was because of the pressure to get RT underway. At the same time my wife was undergoing chemo for lymphoma.

My GP started me on venlafaxine (Effexor) just before my first AUS surgery. It immediately helped with the hot flashes, I'd say reducing the frequency, intensity and duration by about 50%. My dose has been doubled twice and now I've been taking 150mg daily since January this year. It has helped my emotional state immensely. I would say that it saved my life from a mental health standpoint.

I was also put on gabapentin (Neurontin) for another medical condition, and now I still take one or two in the evening and it helps me sleep better. There are still some night sweats, but they don't soak the sheets. I keep a fan by the sofa and by my bed and bought a remote control names EtekCity Zap from Amazon for $20. It can control up to three devices. Generally I only need the fan on for a minute or so until the hot flash passes.

Weight gain has not been a problem, at least not from the Lupron... but I've never been one to have a weight problem anyway. I eat when I'm hungry and stop when I'm full. Us skinny guys understand that, while those who may eat out of an emotional need or for sensory fulfillment probably do not. I did put on ten pounds when taking the high dose of gabapentin last year, but was able to take that back off again. I have maybe a slight appearance of man boobs, but that may just be sagging flesh due to my age.

Other than the hot flashes and emotional instability, the worst thing about being on Lupron has been the brain fog, or what they call "cognitive impairment". It's not just a memory thing. Some of that just comes with age. It's the loss of my presence of mind... the feeling of being "not all there". I find myself doing some pretty stupid things. No major financial blunders, just little things. My wife calls me a "dumb blonde" (it's okay, she's a blonde). And since she has chemo brain on top of that we joke that between the two of us we have one whole brain.

Other issues... elevated pulse and BP, joint and muscle aches, loss of body hair, blurred vision... all seem minor compared to the big three: hot flashes, emotional swings and brain fog.

Thanks Skypilot56....
And everyone else for the reply's....
I get my first injection on the 8/22

MG0351 said...
...I get my first injection on the 8/22

That's 3 months until my "Release" date from my 2 year 'sentence' on this stuff. My SEs have been pretty much the same as others here have mentioned.

"MG, me on the same day."

that'll be interesting to see how firmagon affects you since it works right away. I know with Lupron the process was insidious and I just looked back one day and realized it was working.

I read one guy's account of the loss of libido. he said it was almost a relief because the opposite sex was no longer a distraction. I related to that.

I guess I'll be an outlier. Four months into eighteen months of Lupron as part of triple play treatment.

Some light (compared to everyone else) hot flashes. Mainly lasting only five to ten minutes, and not sweating profusely. Hot flashes have subsided quite a bit in the last few weeks. I was waking up a couple of times a night to toss the covers off for five minutes or so, then covers back on. We switched up type pf sheets and swapped a light down comforter for a light quilt cover. All in all, I'm not going to complain about my hot flashes as compared to what others report, I'm doing well.

I put on five pounds the first few weeks. I've been fighting it by portion control and lighter meals (think salad with steamed salmon on top) and have gotten back to about +2 pounds.

I can tell there is some muscle tome loss, but I've never been a gym rat. I've been thinking of getting some 2 to 3 pound dumbbells for some light resistance training but haven't gotten there yet.

I haven't noticed any fatigue yet -- one week into five weeks of IMRT I'll have to see how the next four weeks go.

Probably some light to minor brain fog -- I'm an engineer a few years from retirement so I think the challenge of the work helps keep it to a minimum.

All in all, I'll take the SE I'm experiencing. I just want to slay this G9 and if I have to have some SE, I'll deal with it. I will take them any day in exchange for 20 to 30 more years of life.

I've always been a positive person, perhaps because I've been blessed by my relative few challenges. However, all that I've been able to achieve has stemmed from education, choice of profession, hard work and good habits (and being blessed to have been born in the US in 1954), not from being born to parents with money. I'm convinced that a positive attitude and just taking a "now what?" perspective as opposed to "poor me" to what comes your way helps defeat this cancer beast.