when are maximum lupron side effects ? - Advanced Prostate...

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when are maximum lupron side effects ?

Tasha51 profile image
53 Replies

I am new here. My Husband started Lupron 4 weeks ago for a 6 month course with salvage radiation. As expected he is tired and has brain fog. In your experience will these symptoms get worse or has the nadir been reached and one could expect him to feel the same for the next 6+ months ? Thank you Tasha

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Tasha51
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Tall_Allen profile image
Tall_Allen

Intense exercise may help some.

Tasha51 profile image
Tasha51 in reply to Tall_Allen

Thank you! Doing resistance bands. We’ll see

Grandpa4 profile image
Grandpa4 in reply to Tasha51

I think he needs intense aerobic exercise. I am a very active 67 year old on both Lupron and Abiraterone. I really have very few side effects. I weight lift, bicycle (80 miles a week) play pickle ball, wake surf and go on long walks. These exercises also help your body deal with radiation side effects.

Tasha51 profile image
Tasha51 in reply to Grandpa4

Thank you for your reply From everyone’s answers it sounds like he needs to up the exercise.

DSJo profile image
DSJo in reply to Tall_Allen

Have you been on leuprolide (Eligard or Lupron)? Intense exercise yes if the joints don't ache, you actually slept through all the night sweats, and you aren't feeling exhausted, etc.

Alturia profile image
Alturia

I have been on lupron since April 14. Sorry to tell you that I get more tired now than I did a month ago. But no brain fog (yet 😀).

Before lupron I walked an hour a day and covered 3.5 to 4 miles. Now I can only manage 1 to 1.5 miles at a time depending on how tired I am - there are good days and bad days. To compensate I now walk 2x a day. I also lift weights 3x a week.

Tasha51 profile image
Tasha51 in reply to Alturia

Thank you! Doing resistance bands. We’ll see

Magnus1964 profile image
Magnus1964

Everyone responds differently to medication. The side effects should fade in month or so.

Kaliber profile image
Kaliber in reply to Magnus1964

Lol

Tasha51 profile image
Tasha51 in reply to Magnus1964

I guess you were a lucky one. Thank you for your reply. Doing resistance bands. We’ll see

DSJo profile image
DSJo in reply to Magnus1964

Sure they do. I've been on the stuff for almost 18 months and it grinds one down as time proceeds.

Nusch profile image
Nusch

I can only contribute that exercise helps. Whatever exercise is affordable. It can also be walking. And if possible he should some form of weight lifting or resistance band training, if dumbbells are too heavy. I lost all my muscles in the first 1 1/2 years, because I wasn’t aware of this back then. Now I got my muscles back and it feels great.

Tasha51 profile image
Tasha51 in reply to Nusch

Thank you! Doing resistance bands. We’ll see. Glad you recovered muscle mass

KocoPr profile image
KocoPr in reply to Tasha51

Also what might help if you get on the workout plan. He will need to be pushed.The only side effects is that It will benefit both of. I have to motivate myself and find myself slacking lately

Tasha51 profile image
Tasha51 in reply to KocoPr

Thank you for your reply. It is always helpful to have a buddy. I would not be walking three times a week without my friend. I dhave started doing my back exercises at the same time as my husband. Very motivational.

KocoPr profile image
KocoPr in reply to Tasha51

Also when i had a trainer he held up a boxing pad and I would bounce on my feet and hit the pad, im thinking you two could do that, it is cardio and good for bone strength in wrists, arms feet.Or you could get a heavy bag like i did and do rounds like in a boxing match

Tasha51 profile image
Tasha51 in reply to KocoPr

Very innovative !

fireandice123 profile image
fireandice123

For me there was an ebb and flow of side effects as I went along. For example, my hot flashes would increase and decrease apparently randomly. There seemed to be no correlation to when I received the injection. Same for fatigue and erectile issues, but independent of each other. So hot flashes might decrease and at the same time fatigue increased. The side effects never went completely away but they were worse sometimes and better other times. All in all, my side effects were never as horrible as I’ve seen with other people but I really detested them. Good luck to your husband, and to you.

Tasha51 profile image
Tasha51 in reply to fireandice123

Thank you for your reply. Doing resistance bands. We’ll see.

Sandy752 profile image
Sandy752 in reply to fireandice123

I'm in my ninth year on Lupron following radiation. Your description of side effects is basically identical to mine.

Tasha51 profile image
Tasha51 in reply to Sandy752

Thank you for your reply. It generally sounds like it probably won’t get too much worse which is good news

Tasha51 profile image
Tasha51

Thank you! Doing resistance bands. We’ll see

dac500 profile image
dac500

Individual experience varies. For many most of the side effects remain while on ADT and may persist long after getting off ADT. This is more true for older men. That has been the case with me. During the last break of one year hot flushes continued all throughout the break. One has to learn to live with the side effects.

Tasha51 profile image
Tasha51 in reply to dac500

Thank you for your reply. Yes getting used to the “new normal “ is a challenge. Hoping for improvement 3-4 months off lupron

Gearhead profile image
Gearhead

Here's my observations based on 3.5 years of Lupron (& Zytiga): Side effects follow varied schedules. For example, hot flashes, fatigue, and libido loss start relatively soon. Belly fat accumulation, muscle loss, and gynecomastia take a little longer. IMO, it's hard to tell if any SEs actually decrease with time, mainly because you finally sort of get used to some of them. Hot flashes are an example. As fireandice123 said, they often come and go on a schedule unrelated to anything.There is another complication for those of us also on abiraterone (Zytiga): Some SEs are caused by the prednisone usually prescribed with abiraterone, especially if the prednisone dosage isn't just right.

Tasha51 profile image
Tasha51 in reply to Gearhead

Thank you for your perspective

London441 profile image
London441

Both cardiovascular exercise and weight lifting are necessary. Fatigue tries to counter it, but he more he fights through it the better he will feel.

Resistance bands, calisthenics and weights can be effective, but obvious though it may be one has to work hard. Most older people don’t put enough effort in to get good results from lifting.

Sadly, ordinary effort on ADT is commendable but has limited value.

A trainer if you can afford it is a great thing. The side effects of Lupron are mitigated more or less in direct proportion to the intensity of effort when training. Anything that helps with this will pay big dividends.

maley2711 profile image
maley2711 in reply to London441

" The side effects of Lupron are mitigated more or less in direct proportion to the intensity of effort when training. " Are you aware of studies that confirm that statement ??? Any links to such studies?

London441 profile image
London441 in reply to maley2711

No. I’m sorry I should have said ‘probably’ or whatever. It’s observational and common sense only. It’s basically impossible to measure because any studies specifically of this natural will be vague and self reporting. ‘Intensity’ is arbitrary. I talk to and have worked with a lot of guys on ADT, and most simply don’t put in enough effort to get good results from exercise. This is a predictable result of aging in general which has to be fought.

It’s similar to the statement ‘you can only lose weight by burning more calories than you consume’. Because caloric restriction is uncomfortable, many people want to believe it could be done by almost any other means.

I was primarily referring to lifting weights minimizing the side effect of fatigue in proportion to intensity, because that is the side that is a direct result of muscle wasting. Which is direct result of castrate levels of T. More preservation/building of muscle means less fatigue. More intensity in training means more strength. This should be clear.

As for the other side effects, hot flashes may be more luck of the draw, but I speculate that this one is lessened by lifting too, but also intense cardiovascular exercise, clean diet, caloric restriction and weight control.

Other than depression, which exercise definitely alleviates to varying degrees, the only other known side effects are the ‘silent killers’ of metabolic syndrome. Belly fat, high blood pressure, high LDL cholesterol, high triglycerides, excess blood sugar. These lead directly to cardiovascular disease, the king of man-killers by far. The more strong and fit you are, the better your opportunity to delay that.

Intense cycling, swimming, running etc is always going to beat short easy walks even if those walks are far better than nothing, which they are.

Studies that prove exercise intensity is proportional to ADT side effect lessening may not exist, but there are plenty that prove intensity is much more important than duration during lifting sessions, and that higher levels of cardiovascular fitness are more indicative of better heart health. Hopefully you don’t doubt that.

maley2711 profile image
maley2711 in reply to London441

Thanks for your reply!!! With just tested lower than hoped for bone density, I'm even more concerned about ADT with radiation....trying to make treatment decision one of these days? I'm also a 98 pound weakling.....though my weight might hide that fact !!!!! bad right knee joint, right elbow joint. The only steady exercise I've done for many years is 2-3 miles walking most days at approx 20-21 minute miles. Do you have any suggestions re perhaps basic calisthenics or stretch band program that might help with that resistance training advice......not excited about traveling to a gym, or bringing a bunch of equipment into our small home.

I asked about the studies because my previous efforts to find some turned up little that was very encouraging??? As I recall, no more than minor help with ADT consequences??? Yes, the studies may not have been well done ....can't judge that with limited info on details of such studies. Anyway, increasing my exercise level just from a general health perspective can't help but be a good idea.....as long as not endangering health at same time....already have 1 or 2 herniated discs, a "minor" inguinal hernia, problem right knee, problem right elbow, and my DEXA bone density results wer just reported today...not great with approx a -1.8 T score for both hips, not as bad for femoral necks...my " z scores" were alsoapprox 10% normal dnsity for a man of 73. Real world, I've suffered several accidental falls in last 10 years, other potential bone injuries, and not a break yet????

Right now, it would be a huge accomplishemnt to do even 5 pushups...pathetic huh!! then again, lucky to do 10 in high school!!!! 98 pound weakling....God's plan!!

My RO hasn't discussed this stuff..is he the norm??? VERY brief mention of possibility that exercise might help with ADT..studies showing it MIGHT??? End of BRIEF discussion!!

London441 profile image
London441 in reply to maley2711

Yes. Weights are obviously more popular, but You can absolutely get equally great results from calisthenics and bands.

It is understandable you are not ‘excited about traveling to a gym’ or crowding your small home with weights. Years ago weights were assumed to be only for strength training ‘fanatics’ Weights work, but the modern phenomenon of ubiquitous gym membership should never be confused with actual participation. The vast majority of gym memberships go completely unused. Human nature to make good intentioned first moves and not follow through. Helps to make the gym industry a cash cow.

Yet for others, the gym is great. Access to a plethora of equipment, an environment of like minded folks, a destination specifically for exercise out of the home, trainers etc is not only appealing in theory but applied regularly. Yet again, they account for a small percentage of actual ‘members’.

As I said in my original reply, the areas of fitness and strength remind me of food intake and nutrition. I don’t like the word ‘diet’ because it has the double meaning of what you eat and eating less/differently for a period of time, which for most is folly.

The similarity is that the actual direct instruction we need to make phenomenal improvements is minimal.

if we are weak/out of shape/fat (any of these) we can easily learn how to effect change through exercise and/or what and how much we eat at a basic level that will be transformative. Adding finer points is great but much less important for, say, the ‘98 pound weakling’.

I could offer ‘suggestions for basic calisthenics or stretch band program’ but I would first suggest browsing through YouTube videos on the subject. Of course there are bad actors for everything, but there is great information too. Many on calisthenics and band work. If I were you I’d try something tailored for seniors. Choose something that starts very easy and leaves you wanting more until it becomes habitual and starts paying off.

It is my opinion only that there is too much prattle about doing exercises correctly being critical to avoid injury, consult with your physician before starting an exercise program etc. Just start with the lowest level and don’t increase quickly. You are very unlikely to hurt yourself if you adhere to this.

Of course, knowing your numbers other than Dexa scan, which is good, matters. Hopefully you get a lipid panel, hemoglobin A1C etc occasionally. Monitoring blood pressure and blood sugar regularly yourself is a good idea too. Home BP and blood glucose level monitoring kits have gotten better and cheaper.

It’s not surprising your MO has little to offer on the subject, though it was worth asking.

maley2711 profile image
maley2711 in reply to London441

Seems like sometimes we spend all our time researching..... you and others on forums are not paid to give me the answers, and the "healthcare" industry is....well, I'm less and less convinced . So much inefficiency in supplying patients with actual data on proposed treatments....I'm not big on making big changes in my life without proof of the probability of benefit. I would consider a strict exercise progran just another type of treatment...same with changing diet, supplements, etc.

Hmmm, wonder where I would start that would lead to my being able to do more than 1 pushup..that would be a huge improvement from my base!! I can do female pushups, if that means anything...my sis says she can't even do those!! I guess you don't need strngth to have a decent life expectancy.....parents and Grandma lived to 80s, and Mom's sister is now 93 and, foolishly IMHO, had breast removal one year ago.....she has been on a much swifter decline since the surgery!! No athletic body types in our family!! narrow shouldered, wide waisted !!!

London441 profile image
London441 in reply to maley2711

Strength and fitness are proven indicators of increased longevity, but I feel we should always keep in mind that longevity alone really isn’t worth much.

The real juice in the squeeze for the aged is quality of life, which is so crazily better when fit and strong it’s almost indescribable.

Being weak and unfit when old means compounding health issues, most commonly heart disease of course.

No one wants that, but falling is worse. Hip fractures requiring hospitalization are even more common in the elderly than most think, and relatively few make it out alive. Better strength, stability and balance prevent it like nothing else can.

Longevity for its own sake I want no part of!

maley2711 profile image
maley2711 in reply to London441

Yes....that's another subject......all the men receiving PCa treatment for whom the risk of PCa death without treatment is only slightly elevated compared to the non-diagnosed man. I'm G 4+ 5 (one sample <10%) as of one year ago, and the Memorial Sloan non-treatment nomogram shows 18% probability of Pca death between now and age 83. Yes, treatment has much better PCa mortality results, but..........

I've been very disappointed that neither the nice guy urologist nor the nice guy RO has volunteered to discuss numbers re study outcomes for benefits and negatives????

So, what would help take me to the point where I could do one clean man's pushup.......just strain and strain until one day...voila ? BTW, at 6'1" and 198, don't believe I look like 98 pound weakling? But, truth is truth!!

London441 profile image
London441 in reply to maley2711

6'1", 198 and can't do a pushup? Sarcopenia at work. Keep your clothes on and no one has to know. In the meantime start with wall pushups and slowly add incline. More effective than the old 'female pushup'.

Nice guy doctors staying in their lane, a whole 'nother subject.

Tasha51 profile image
Tasha51 in reply to London441

Thank you for your reply. Again it sound like stepping it up is a good idea.

rsgdmd profile image
rsgdmd

Been on Lupron 2 1/2 mo. and will likely be on the rest of my life. Fatigue, for me, was worse in the beginning. I find exercise really helps a lot. I lift weights 3X a week and try to walk at least a couple of miles every day. I'll lift when I feel tired and the fatigue tends to lift by the time I'm done. Sometimes have to fight thru it. Hot flashes are a pain, but dealing with it.

Tasha51 profile image
Tasha51 in reply to rsgdmd

Thank you for your reply. Definitely seems one has to fight through the fatigue to do all this exercise.

rsgdmd profile image
rsgdmd in reply to Tasha51

The exercise really reduces the fatigue, at least for me. At times, it's either nap or lift weights. When I lift, I don't feel the need for the nap anymore.

SteveTheJ profile image
SteveTheJ

I didn't have radiation. I also don't exercise "intensely" nor do I think it's advisable to do so unless you have a physical fitness background or are advised by a physical therapist because you could easily hurt yourself.

Lupron and Erleada together give me some extra fatigue I would not have had otherwise but none of the other symptoms such as hot flashes. However, the symptoms aren't what you should be concerned about IMHO; be concerned about the best tools to keep the cancer under control.

Get the best/most information you can get and make a decision based on what provides the best quality of life and life expectancy. Everything else is a distraction IMHO.

Tasha51 profile image
Tasha51 in reply to SteveTheJ

Thank you for your reply. How true!! When treatment is needed, it’s better than the disease. Following the latest standard of care is the best treatment.

Runner4000 profile image
Runner4000

As has been mentioned, weight-bearing exercise is important to minimize loss of bone mass.

Tasha51 profile image
Tasha51 in reply to Runner4000

Thank you for your response. Walking , walking.

wilcoxsaw profile image
wilcoxsaw

From my experience, likely a bit worse until he stops at 6 months.

Exercise certainly helps particularly resistance training with weights or something similar. I have worked out with weights for 47 years as well as light cardio and continued to do this 4 days a week two and a half hours each day throughout a 17-month and a 12-month course of adt each time concurrent with radiation.

I wish your husband luck a 6-month course of ADT will be over before you know it and hopefully this treatment will be his last.

I hope this helps

Scott

Tasha51 profile image
Tasha51 in reply to wilcoxsaw

Thank you for your response. I admire your exercise program. Definitely focused on the outcome and the end of the this tunnel.

Foldem profile image
Foldem

It’s more than likely he will be on Lupron/Xtandi for far longer than 6 months. I was on Xtandi for 6 years.

Tasha51 profile image
Tasha51 in reply to Foldem

Thank you for your reply. At this time it’s 6 months of adjuvant ADT with salvage RT. In the past was 18 months or so. Of course ADT may be necessary later on but hoping for control for years after RT.

Gabby643 profile image
Gabby643

Lupron + Erleada. 1 1/2 years and I’m maintaining 3-4 mile fast walks w/ fast music blasting my ear drums 5 days a week. Golf 2 days. Throw in some weights and yard work. Yes, hot flashes, fog and tired at times. There are the times when I feel depressed because it’s a little scary. 🙏🏼🤙🏻🎶

Tasha51 profile image
Tasha51

Thank you for your reply. Music always helps! It is scary and good to admit the feeling.

DSJo profile image
DSJo

As suggested elsewhere everybody responds differently. I would say things will get worse based on my experience but he is only on it for 6 months so not terrible.

Tasha51 profile image
Tasha51 in reply to DSJo

Thank you for your reply. It’s always helpful to know what to expect.

cancerfox profile image
cancerfox

My experience was that the side effects from ADT get continually worse with time, despite exercising and weight lifting, except for the hot flashes which lessened with time. Six months is a relatively short time to do ADT, though, so it shouldn't be too terrible an experience for your husband.

Tasha51 profile image
Tasha51

Thank you for your specific reply to the question . Yes now with hot flashes and headache but muscle aches and brain fog seem to have stabilized.

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