Started Hormone Therapy Today

Posted by johndavis60 @johndavis60, Aug 6 4:03pm

Got 2 shots of Firmagon in the stomach and will be on that for 3 years. Also xytiga and 5 mg prednisone for 2 years.
Radiation starts in September. Good times 🙂

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

When should I expect side effects (hot flashes, fatigue, labido changes etc .. ) to kick in? I got my shots a week ago today. So far no side effects.

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Profile picture for johndavis60 @johndavis60

When should I expect side effects (hot flashes, fatigue, labido changes etc .. ) to kick in? I got my shots a week ago today. So far no side effects.

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Side effects appear within weeks or months.

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
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 on the 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.

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, all people on ADT should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium citrate taken daily helps keep your bones strong. Ask your doctor about this.

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Profile picture for jeff Marchi @jeffmarc

I went through the same thing with Lupron being unavailable, and I had to have an Eligard shot. I heard about them putting them in the stomach, But the nurse that gives them to me, put them very close to where they gave the Lupron shot and as a result, it didn’t hurt at all.

Sounds like you had a screwup giving you the shot, Either that or they switched to the monthly Firmagon shot, which is really a problem for many people.

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This was some years ago. It was just a one-time change which we were told was necessary due to a shortage. It was at the Simon Cancer Center in Indianapolis, and the medical oncologist's nurse warned us about the change and that it would have to be put into my husband's stomach area. Luckily he has gotten a six-month Lupron shot as usual ever since.

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Profile picture for lag @lag

This was some years ago. It was just a one-time change which we were told was necessary due to a shortage. It was at the Simon Cancer Center in Indianapolis, and the medical oncologist's nurse warned us about the change and that it would have to be put into my husband's stomach area. Luckily he has gotten a six-month Lupron shot as usual ever since.

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Yes it was at least 4 years ago. There’s a nurse that was not properly educated. I ended up having to get two 6 month Eligard shots because of that Lupron shortage. Both were right near where they gave me the Lupron shot in the hip, Just a slightly different spot.

I’d heard about the fact that it might need to be given in the stomach, but the doctors at Kaiser knew better.

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Profile picture for jeff Marchi @jeffmarc

Side effects appear within weeks or months.

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
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 on the 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.

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, all people on ADT should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium citrate taken daily helps keep your bones strong. Ask your doctor about this.

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Thanks Jeff! I will definitely ask MO about bone strengthening meds and whatever else I should be doing to guard against long term effects of ADT. I go for walks everyday, but will start hitting the gym 3 times/week. Both my kids go to the gym so they can show me what to do (I hope)

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Profile picture for johndavis60 @johndavis60

Thanks Jeff! I will definitely ask MO about bone strengthening meds and whatever else I should be doing to guard against long term effects of ADT. I go for walks everyday, but will start hitting the gym 3 times/week. Both my kids go to the gym so they can show me what to do (I hope)

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One thing you may notice soon is that your stomach muscles are giving out and you are getting a belly. Doing a lot of sit-ups can offset that a little.

I try to do 60 or 70 every time I hit the gym. I’ve always been thin, but I’ve got a little bit of a belly because of all these years on ADT.

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Profile picture for stew80 @stew80

wow. 39 fractions of radiation is a lot.

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I had 39 radiation treatments as well. I only did one shot of the 6 month Lupron. My Urologist knows I won’t do anymore hormone shots even if my prostrate cancer returns! Done!

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Profile picture for Scottyrussell @scottyrussell

I had 39 radiation treatments as well. I only did one shot of the 6 month Lupron. My Urologist knows I won’t do anymore hormone shots even if my prostrate cancer returns! Done!

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Your life has so little value that you were unwilling to take a drug that may make you uncomfortable, but can extend your life for a decade or more. Wouldn’t you really rethink this if you start having pain from metastasis?

I’ve been on ADT for nine years, I don’t like it, but I’m still around nine years later.

Dying from prostate cancer is extremely painful, My father died from it, and he couldn’t even talk for the last few weeks before he died because he was on so much painkiller he was Essentially unable to communicate.

Well, hopefully for you they come out with some way to stop prostate cancer, Without hormone therapy.

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I'm with Jeff ,I've been on ADT for almost 15 months and will be on it for 24 months at least. I'm Gleason 9 and so far so good +. I've gained weight ,have hot flashes , etc .but I have hope .Hang in there Scotty.

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Profile picture for jeff Marchi @jeffmarc

Side effects appear within weeks or months.

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
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 on the 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.

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, all people on ADT should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium citrate taken daily helps keep your bones strong. Ask your doctor about this.

Jump to this post

Jeff, you should really consider writing a book or at least practical guide for patients and PC management 🙏 . There is basically only one excellent book written by a professional, but none that are written by a patient and from the prospective of a patient with such vast knowledge about treatments for every stage of PC and that can give patients practical advise about everyday life while dealing with side effects and such. THANKS for sharing all of those supposedly minor but extremely important details about dealing with injections and ADT and the rest of medications. For medical professionals "injection site" is of no big consideration , obviously, but for a patient it can be a difference between having a good night sleep and no EXTRA pain and to the contrary being in pain, feeling down and defeated.

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