1. < Prostate Cancer

Lupron: Anyone have muscle weakness and severe leg pain?

Posted by kam23 @kam23, Jul 14, 2023

I have PC and have been on Lupron injections every 3 months for 15 months. I am experiencing severe leg pain in hamstrings and glutes. Has anyone else experienced this or tried monthly shots?

This has been getting worse for the last 3-4 weeks. I’m afraid I’ll be in a wheelchair or have to stop this form of testosterone elimination therapy.

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kam23 | @kam23 | Jul 19, 2023
In reply to @mikewo "You don't mention your age. It has a lot to do with whether you need ADT..." + (show)
@mikewo

You don't mention your age. It has a lot to do with whether you need ADT or it is even helpful for your case of cancer.

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Sorry. Diagnosed at 58. Now 60 and about 1.5 years into this journey.

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mikewo | @mikewo | Jul 18, 2023
In reply to @john6stodolka "Thanks for the reply. One oncologist told me at the beginning of radiation that I would..." + (show)
@john6stodolka

Thanks for the reply. One oncologist told me at the beginning of radiation that I would also be taking Lupron (later switched to Eligard by Mayo) for 36 months - "if I could handle it." I asked what was meant by that and now I know. There is no way I can continue to live like this for 36 months. I hear about men going many years on ADT and it not affecting them like it affects me. It's interesting how it affects everyone differently. I'll certainly ask about monthly injections to see if that's a viable option. Thanks for the tip!

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You don't mention your age. It has a lot to do with whether you need ADT or it is even helpful for your case of cancer.

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1 reply
hbp | @hbp | Jul 17, 2023

I will consider a move to Thailand as it appears that you can afford to be ill and afford to die and still have money left over for a nice place in heaven with a view. Things are finally looking up. Thanks

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1 reply
ddun1953 | @ddun1953 | Jul 16, 2023
In reply to @john6stodolka "Thanks for the reply. One oncologist told me at the beginning of radiation that I would..." + (show)
@john6stodolka

Thanks for the reply. One oncologist told me at the beginning of radiation that I would also be taking Lupron (later switched to Eligard by Mayo) for 36 months - "if I could handle it." I asked what was meant by that and now I know. There is no way I can continue to live like this for 36 months. I hear about men going many years on ADT and it not affecting them like it affects me. It's interesting how it affects everyone differently. I'll certainly ask about monthly injections to see if that's a viable option. Thanks for the tip!

Jump to this post

I have only had one injection of 3 month Lupron. AWFUL but better than looking up from under the ground. What choice to we have, maybe live long or die. I am very depressed though, have terrible fatigue, back pain, gut pain, and more. My surgery date is Aug. 3 to cut the little bastard out then radiation. How much does radiation cost as I am in Thailand, the hospitals are good and it is a lot cheaper here. My whole ordeal started 2 months ago from my normal annual physical to then a spiked up PSA to 6.9 and after the biopsy cancer in both sides and a Gleason of 8 but both the CT and the Bone S came back no spread. All the scans, all the X Rays, blood works one night in the hosp. for the Biopsy all Lupron cost and then the cost of the surgery with one night in the ICU and a week on the hosp. in a private room was only $10,000 American total. God Bless all of you.

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greglynch7 | @greglynch7 | Jul 16, 2023
In reply to @john6stodolka "I'm on Eligard. I have Stage 4, advanced, agressive, Gleason 9 PC. After nine months, I..." + (show)
@john6stodolka

I'm on Eligard. I have Stage 4, advanced, agressive, Gleason 9 PC. After nine months, I can barely get up from chair because of stiffness and pain in my legs, have some pretty good hot flashes about once an hour, have lost some muscle, lots of fatigue. I also have heart failure so the oncologist is considering stopping the Eligard as it can cause heart attacks. Leuprolide seems to me to be a good drug/bad drug and everyone has to weigh their own risk/reward status with it. I'm really wondering if I should stop the drug (regain some lifestyle normalcy) and hope the PSA stays low or continue another nine months with the side effects that are changing my way of life. Big decision ...

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On lupron for 15 yrs now zoladex 2-3 yrs. Tremendous muscle atrophy (sarcopenia). Hot flashes resolved over a short 1-2 yr. period. Lupron and all ADT drugs do the same but also the only treatment that has done anything over 20 yrs of stage 4 disease.

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john6stodolka | @john6stodolka | Jul 15, 2023
In reply to @kam23 "Thank you. My story is very similar to yours..Stage4 (to start), Lupron, chemo (Docetaxel), and radiation...." + (show)
@kam23

Thank you. My story is very similar to yours..Stage4 (to start), Lupron, chemo (Docetaxel), and radiation. Twelve months later clear but doc wants me to continue Lupron 2-3 more years if possible. Facing same decision on lifestyle. I have read that monthly injections have less side effects. Am getting switched to those starting with my next dose of Lupron.

Jump to this post

Thanks for the reply. One oncologist told me at the beginning of radiation that I would also be taking Lupron (later switched to Eligard by Mayo) for 36 months - "if I could handle it." I asked what was meant by that and now I know. There is no way I can continue to live like this for 36 months. I hear about men going many years on ADT and it not affecting them like it affects me. It's interesting how it affects everyone differently. I'll certainly ask about monthly injections to see if that's a viable option. Thanks for the tip!

REPLY
2 replies
kam23 | @kam23 | Jul 15, 2023
In reply to @edmond1971 "Definitely try to fight the rocking chair and find an activity to keep in motion. I'm..." + (show)
@edmond1971

Definitely try to fight the rocking chair and find an activity to keep in motion. I'm 9 months into adt (eligard + zytiga + prednisone) and my biggest gripe with muscle pain is the increased sensitivity to any inflammation and that it takes weeks if not months for healing. The mental brain fog is also a challenge. Keep the faith, you can find the way.

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Thanks. You also. I did have pain in knees and calf at 9 months. Would keep me up half the night. It cleared in about 2months. I took marijuana gummies occasionally to help get to sleep. (Legal in my state.)

Hopefully the hamstring pain will take a similar course an reduce over time.

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kam23 | @kam23 | Jul 15, 2023
In reply to @john6stodolka "I'm on Eligard. I have Stage 4, advanced, agressive, Gleason 9 PC. After nine months, I..." + (show)
@john6stodolka

I'm on Eligard. I have Stage 4, advanced, agressive, Gleason 9 PC. After nine months, I can barely get up from chair because of stiffness and pain in my legs, have some pretty good hot flashes about once an hour, have lost some muscle, lots of fatigue. I also have heart failure so the oncologist is considering stopping the Eligard as it can cause heart attacks. Leuprolide seems to me to be a good drug/bad drug and everyone has to weigh their own risk/reward status with it. I'm really wondering if I should stop the drug (regain some lifestyle normalcy) and hope the PSA stays low or continue another nine months with the side effects that are changing my way of life. Big decision ...

Jump to this post

Thank you. My story is very similar to yours..Stage4 (to start), Lupron, chemo (Docetaxel), and radiation. Twelve months later clear but doc wants me to continue Lupron 2-3 more years if possible. Facing same decision on lifestyle. I have read that monthly injections have less side effects. Am getting switched to those starting with my next dose of Lupron.

REPLY
2 replies
kam23 | @kam23 | Jul 15, 2023
In reply to @sam60 "I was on Lupron three month injections for about five years. It was not easy and..." + (show)
@sam60

I was on Lupron three month injections for about five years. It was not easy and lost massive amounts of muscle mass during that time. I was a physical education teacher, and college wrestler and I’ve tried WT room many times with limited results. Best thing I have found for myself is working in my garden. Something I enjoy doing, and it has helped a little bit. It’s a tough road to haul especially I think if you were in very good health physically before the cancer. Everyone is different I do think that the ADH with Zytiga and prednisone has kept me alive so far. Good Luck and try and stay on treatment if you can.

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Thank you. Are you off the ADT now? How long after ending the ADT did it take you to return to normal?

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john6stodolka | @john6stodolka | Jul 15, 2023

I'm on Eligard. I have Stage 4, advanced, agressive, Gleason 9 PC. After nine months, I can barely get up from chair because of stiffness and pain in my legs, have some pretty good hot flashes about once an hour, have lost some muscle, lots of fatigue. I also have heart failure so the oncologist is considering stopping the Eligard as it can cause heart attacks. Leuprolide seems to me to be a good drug/bad drug and everyone has to weigh their own risk/reward status with it. I'm really wondering if I should stop the drug (regain some lifestyle normalcy) and hope the PSA stays low or continue another nine months with the side effects that are changing my way of life. Big decision ...

REPLY
2 replies
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