Getting second lupron injection

Posted by kevtrav @kevtrav, 5 days ago

Has anybody gone through rounds of lupron injections? I had my first shot st the end of February. I've experienced severe fatigue, mood swings, tears come easily, muscle loss, weight gain, brain fog and more. I have my second shot in early September. If you've had this, does your body handle the second shot better? Does the fatigue and side effects hit you hard again?

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@pesquallie I would be hesitant to use conclusions extrapolated from trials treating patients with advanced “late-stage, therapy resistant prostate cancers using a monthly, high-dose injection of testosterone” to patients with much earlier stage lower-grade disease.

They state that, “For decades, the goal of endocrine therapy in prostate cancer has been to achieve absolute inhibition of androgen receptor function, the protein that senses testosterone levels…..It’s been a highly effective strategy, leading to substantial improvements in overall survival….Unfortunately, most patients with advanced, metastatic disease who are treated with drugs to inhibit androgen signaling will progress to an aggressive form of the disease for which there are limited therapeutic options.”

Basically, what they’re saying is for lower grade prostate cancer, use ADT as planned; for advanced metastatic disease, consideration of BAT (or some other protocol) might be more appropriate.

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Profile picture for maga @maga

After 2 injections of Lupron and 23 radiation treatments, I was very exhausted. I so fed up with feeling this way I became angry. I went home, put on my swim suit and went swimming in the local salt water lagoon. Since I was out of shape for swimming I only swam about 200 yards. ( I gradually work up to 1000 yards.) When I got out of the water I felt about 70% of my energy came back along with a better attitude. I attribute this to breathing deep with each stroke which injects oxygen into the blood stream. I had 2 years of Lupron and went thru a lot of what you are going thru. My last injection of Lupron was last March. Most of the bad experience is leaving. I am 87 years old and still swim in the summer, lift weights twice a week and run up 3/12 flights of stairs as fast as I can twice a week.
I'm a firm believer in exercise to relieve much of the negative things you mentioned.

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@maga Yeah, I agree that exercise is IT, for many reasons. But there's little or no discussion among these threads about the situation of people who've never really exercised, and then are hit with ADT. There was the long habit of no exercise in the "before time" (which doesn't go away), and now they get the additional physical fatigue with ADT, for a double-whammy. Top that off with the idea that you have to bust your butt or you're not doing it right, and the couch looks pretty good. But there are some ways to get started. Google "starting an exercise program from zero" for some easy and sensible beginner tips.

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Profile picture for jheadding @jheadding

Same:
I had two of the six month Lupron injections, and had most of the side effects/effects that you note. The severity of side effects for myself did not decrease with the second injection. I found the following to be helpful in limiting intensity of the side effects:
1) exercise, although difficult it helped tremendously. I walked daily and also initiated a weightlifting program.
2) Cymbalta, a pain relieving antidepressant helped significantly with hot flashes, mood swings, and situational depression. After completing Lupron I was able to withdraw completely from the drug.
3) Daily naps helped significantly as well.
4) Having a spiritual foundation was helpful. Daily scripture reading was essential for me.
5) continue to stay and engage on this forum. Lots of good useful information and encouragement. Remember the positive effects of using ADT therapy despite the short term hell we have to go through.
6) I think one of my biggest issues was weight gain. Retrospectively, I probably should have limited caloric intake significantly during ADT treatment.
Good luck, hang in there it does get better after completion.

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@jheadding I appreciate this so much! I've been working out most of my life, so getting lifting in isn't too much of a problem. I belong to a gym and a nice (expensive) setup in my basement. And I walk my dog daily, usually 2-plus miles in the morning. I finally have endurance built back up that I'm not dragging... most days. I am not looking forward to the fatigue hitting me again after the second shot.
I'm strong on spirituality (daily Bible and devotional readings and trying to get to church regularly). And I'm super strong on naps! 😁
I'm on anti-depressants now. My wife has had early onset dementia for about 9 years and my mom for a year now. I keep my wife first... TRYING to take better care of myself by eating healthy.
Thanks again!

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Profile picture for guybe @guybe

@maga Yeah, I agree that exercise is IT, for many reasons. But there's little or no discussion among these threads about the situation of people who've never really exercised, and then are hit with ADT. There was the long habit of no exercise in the "before time" (which doesn't go away), and now they get the additional physical fatigue with ADT, for a double-whammy. Top that off with the idea that you have to bust your butt or you're not doing it right, and the couch looks pretty good. But there are some ways to get started. Google "starting an exercise program from zero" for some easy and sensible beginner tips.

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@guybe
I was never into exercise before ADT. After I started ADT, I didn’t exercise for the first five or six years. First, I started walking every day, At least a couple of miles, As fast as I could go.

Then I found out I couldn’t get off the floor without pulling myself up on something.That started me going to the gym 3 days a week. That enabled me to stand up without holding on.

I never did have fatigue or mood issues, so I didn’t need to do the exercises in order to reduce the those problems..

Everybody reacts differently to ADT. I also wasn’t getting informed about the benefits of exercise, Unless you participate in some prostate cancer groups, you don’t hear about the need to exercise.

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Profile picture for surftohealth88 @surftohealth88

Is there any chance that you can switch to Orgovyx ?
My husband is on it and has zero side effects *knock the wood.
I know that "no side effects" is rarity but many members here have much better results with Orgovyx than with other ADT drugs.

Also - do you exercise every day (aerobic plus weight/resistance training) ? My husband attributes his good tolerance of ADT to exercise and Orgovyx.

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@surftohealth88 I'm not sure. I've kind of been winging it throughout the whole ordeal. My wife has had early-onset dementia for 9 years, so she is my top priority.
I do workout pretty regularly and that seems to help.

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Profile picture for Jeff Marchi @jeffmarc

I was on Lupron for six years? I had lots of hot flashes, Muscle loss, brain fog, Bone density problems. What you describe are what a lot of people experience.

If the mood swings become a real problem and you have depression, you need to see a Doctor Who can prescribe anti-anxiety medicine medicines for you. People in this forum have mentioned the following drugs and even more for anxiety reductio.

Common drugs for depression and anxiety
Wellbutrin, Zoloft, Effexor, Buspirone, Cymbalta, Lexipro, Prozac, Celexa, Paxil, Escitalopram

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I walk fast on a track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor. If you have this problem, we can give you a list of drugs that can stop it. Ae doctor at a recent conference, put out a big list. I wear a Embrlabs.com Wave 2 device. It can reduce the hot flashes during the day and at night pretty much stops them completely. Megestrol has worked for some people.

I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a doctor that spoke to a recent webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people gain a lot of weight. The average is 5 pounds but some gain more and some gain none. Be aware that because you are on ADT you will find it very difficult to lose weight. That is one of the problems when you have a very little testosterone, you really have to work for it. Cutting out meals for weight loss often backfires by causing your metabolism to slow down and promoting fat storage as the body enters a survival-oriented "conservation mode". It leads to nutrient deficiencies, intense hunger causing overeating later, energy crashes, mental fatigue, and potential muscle loss.

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@jeffmarc You're doing everything right! I really appreciate your detailed response!
I workout pretty regularly- weights and then walking my dog daily for at least 2 miles.
I'm already on anti-depressants because my wife has had early-onset dementia for 9 years. She's my top priority.
I've put on 10-12 pounds and all it seems in my belly.

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Profile picture for zzotte @zzotte

I don’t take Lupron but a similar med is Eligard it leaves me a rash, black an blue and a large nut like that doesn’t go away I’m on my 4th, I hopping to switch to a pill orgovix soon

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@zzotte I'm sorry to hear about those side effects! I hope you get the new med quickly!

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Profile picture for pesquallie @pesquallie

Starting with my 3-month duration, second Lupron injection, 15 months ago, my side effect began to get really bad. Initially it was soaking sweats both hot and cold 24 hours/day. Three months later 24 hours/day severe headaches, brain fog, bone pain, and muscle aches started and got worse each day for eight more months. Then in June, after 11-months these side effects all suddenly dropped to about 10% of the worst level. I still have no libido or erections, and my testosterone has only recovered to about 125 while my PSA is < 0.03. My initial diagnosis was Level 3bt and I am 83 years old. I stopped all Lupron after 4 months and believe another shot would have killed me because the pain was so severe. I have done a lot of research which indicates to me that ADT may do more harm than good, especially if you are over 80. ADT studies claim that many men see a 20% longer life expectancy, but many individuals see no benefit especially if they are older. Everyone sees different side effect which vary from minor to life threatening. Duke Health is currently doing the right kind of research by using AI to determine which men will really benefit so that others can be spared the suffering side effects.

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@pesquallie Wow! I'm so sorry about those side effects!
For the first 4 months on Lupron I was regretting having the radiation and the ADT! It's miserable.

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Profile picture for brianjarvis @brianjarvis

Did your doctor explain to you prior to the first injection that everything you just described is typical with any of the ADT hormone therapies (Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, Decapeptyl, Firmagon, and Orgovyx)?

ADT surpresses testosterone, the hormone that gives you all of your male characteristics, including strength, fitness, endurance, emotions, etc.

Your testosterone levels will be below most women’s levels, and you’ll go through what’s often referred to as “male menopause.” Many men experience these side-effects to varying degrees — some more, some less —> forgetfulness, confusion, memory loss, mood swings, emotions, fatigue, loss of libido, ED, insmnia, hot flashes, night sweats, muscle atrophy, weight gain, and more…. (I only experienced loss of libido, muscle atrophy, and mild “warm flashes”.)

The key to minimizing/avoiding ADT side-effects is a robust resistance-training exercise program. These offset the severe metabolic side-effects of low testosterone.

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@brianjarvis I was told of "some" of the side effects. When I felt something new, I'd search it and see that it was a side effect of the ADT.
I do workout and walk, which has helped.

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Profile picture for graybeard46 @graybeard46

Yes , I had all your side effects which put me into depression, I wish I didn’t get the second shot , I almost cancelled but my radiologist convinced me to get it . Almost 2 yrs post and the tears still come easily, I’m not happy with large breasts , tender nipples and almost 2 yrs post surgery and ED wearing me down

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@graybeard46 The side effects are nasty. Part of me wanted to say, "Screw it. I'm going to start taking testosterone boosters."
I was already depressed because of my wife's dementia, and this ADT just added to it.

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