1. < Prostate Cancer

ADT. Afraid of it

Posted by chamblee54 @chamblee54, Apr 14 9:01am

I’m 4+ 3 Gleason in one core. But recent mri shows tumor growth. New biopsy coming.
They want to add ADY and I’m scared to death of the side effects. The weight gain and mood swings are especially troubling.
Please share your experience and decision and add your Gleason score.
It’s a quality of life issue for me.
Afraid also of the depression - fatigue. Starting beam radiation soon

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chipe | @chipe | Aug 12 11:11am
In reply to @hbp "Chambee, I am 77, G9, CR, advanced PC, had 13 months of ADT and Erleada and..." + (show)
@hbp

Chambee, I am 77, G9, CR, advanced PC, had 13 months of ADT and Erleada and RP. I had the side effects that you mentioned but they were not terrible and I handled them fine. My PSA has been .01 for 2 years and I have been off of all meds for 17 months. My cancer will probably return and when that happens I have been advised that I might be put back on these drugs. Cancer and cancer treatment is certainly something to fear but I learned in life and the army during the Viet Nam war that you have to control your fear and do what you gotta do to stay alive and get over it. Best of Luck to you. You’ll do fine!

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Welcome home brother! Drafted in '72, never went to Nam, but came close.

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hbp | @hbp | Aug 12 1:09pm

Chamber I had ADT and Erleada for 13 months and Robo surgery. The side effects were livable but it was not my choice, flashes, poor sleep, lost muscle, some depression but the good thing was I did not die. Been on this journey 3 years, 77, G9, high risk, CR, PSA .01, enjoying life and want to keep going. If you get depressed ask your doctor for medication as that helps during daytime and sleep time. Good luck

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wooldridgec | @wooldridgec | Aug 12 1:15pm

I have been on ADT or 2+ years. White it is true ADT can make you gain weight. You still can control your weight by eating a plant based diet with more vegetables, fruit, and protein. I gained weight after becoming too relaxed with eating things I should not be eating. Once I jumped back on my plant based diet I dropped 5 lbs. and I am continuing to drop the weight. You also need to exercise and lift weights. Not heavy weights but enough to maintain what muscle you have left. There are days I feel down, but most of the time I do not even feel anything. I work between 10-12 hours per day as a software developer Subject Matter Expert (SME). It is the men who refuse treatment that end up with the worst results down the road. Praying for you.

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ecurb | @ecurb | Aug 12 2:25pm

I agree your statements 100% but I need to lie down and rest every 3-4 hours. Maybe that’s cuz I m taking KEPPRA too, for seizures weight control is possible if you eat correctly as you stated. Fatigue is my biggest enemy.

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1 reply
northoftheborder | @northoftheborder | Aug 12 3:35pm
In reply to @wooldridgec "I have been on ADT or 2+ years. White it is true ADT can make you..." + (show)
@wooldridgec

I have been on ADT or 2+ years. White it is true ADT can make you gain weight. You still can control your weight by eating a plant based diet with more vegetables, fruit, and protein. I gained weight after becoming too relaxed with eating things I should not be eating. Once I jumped back on my plant based diet I dropped 5 lbs. and I am continuing to drop the weight. You also need to exercise and lift weights. Not heavy weights but enough to maintain what muscle you have left. There are days I feel down, but most of the time I do not even feel anything. I work between 10-12 hours per day as a software developer Subject Matter Expert (SME). It is the men who refuse treatment that end up with the worst results down the road. Praying for you.

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I'm vegetarian, so obviously I like the "plant-based" part, but moderate portions of lean meat would probably also work well for those who eat it (and might help with the low iron ADT can sometimes cause).

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northoftheborder | @northoftheborder | Aug 13 3:11pm
In reply to @ecurb "I agree your statements 100% but I need to lie down and rest every 3-4 hours...." + (show)
@ecurb

I agree your statements 100% but I need to lie down and rest every 3-4 hours. Maybe that’s cuz I m taking KEPPRA too, for seizures weight control is possible if you eat correctly as you stated. Fatigue is my biggest enemy.

Jump to this post

You're right that fatigue is brutal. The best way to beat it is moderate activity, but fatigue keeps you from being able to do that activity, so it's a vicious cycle.

My physical recovery from the metastasis on my spine was a real rollercoaster for the first year (especially combined with radiation, ADT, and ARSI): a bit of activity? OK. A bit more? Feeling good. Another 5 minutes? Over the cliff and mostly in bed for the next week or two. Rinse and repeat.

The line between "enough" and "too much" can be razor thin, but I'm glad I kept trying.

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toolbelt | @toolbelt | Aug 13 6:53pm

Please look at my profile for my 6 month ADT treatment. No. Big. Deal.

Stay Strong Brother.

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1 reply
scottbeammeup | @scottbeammeup | Aug 14 6:56am
In reply to @toolbelt "Please look at my profile for my 6 month ADT treatment. No. Big. Deal. Stay Strong..." + (show)
@toolbelt

Please look at my profile for my 6 month ADT treatment. No. Big. Deal.

Stay Strong Brother.

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I'm on six month treatment, 73 days left to go. TBH, my emotions are all over the map. I have periods where I go into a really dark place and feel "broken," like my physical body is walking around but my soul is off someplace else. These feelings for me are worse at nighttime when I've got nothing to do but sit around and ruminate.

The sexual side effects are also REALLY hard to deal with. Unlike most, I still get decent erections on ADT but am unable to have an orgasm which is extremely frustrating. I talked to a social worker but their advice was COMPLETELY unhelpful ("you can still have intimacy with someone by doing things like cooking a meal together"--that's called FRIENDSHIP in my book not ROMANCE).

I suppose I'm lucky in that my physical effects have been minimal. Insomnia, muscle loss but still able to do a decent workout and exercise a lot, a few cardiac issues in the beginning but those have smoothed out.

I hope when it's over that it was all worth it. I would encourage you to do ADT if you need it. I'm going to stick it out, but I've also decided that if it doesn't work I won't do it again because it has changed me too much from what I want to be (if that makes sense).

Other days I do OK. I am exercising a lot and that helps.

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2 replies
wooldridgec | @wooldridgec | Aug 14 7:40am
In reply to @scottbeammeup "I'm on six month treatment, 73 days left to go. TBH, my emotions are all over..." + (show)
@scottbeammeup

I'm on six month treatment, 73 days left to go. TBH, my emotions are all over the map. I have periods where I go into a really dark place and feel "broken," like my physical body is walking around but my soul is off someplace else. These feelings for me are worse at nighttime when I've got nothing to do but sit around and ruminate.

The sexual side effects are also REALLY hard to deal with. Unlike most, I still get decent erections on ADT but am unable to have an orgasm which is extremely frustrating. I talked to a social worker but their advice was COMPLETELY unhelpful ("you can still have intimacy with someone by doing things like cooking a meal together"--that's called FRIENDSHIP in my book not ROMANCE).

I suppose I'm lucky in that my physical effects have been minimal. Insomnia, muscle loss but still able to do a decent workout and exercise a lot, a few cardiac issues in the beginning but those have smoothed out.

I hope when it's over that it was all worth it. I would encourage you to do ADT if you need it. I'm going to stick it out, but I've also decided that if it doesn't work I won't do it again because it has changed me too much from what I want to be (if that makes sense).

Other days I do OK. I am exercising a lot and that helps.

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How old are you Scott?

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1 reply
northoftheborder | @northoftheborder | Aug 14 8:27am
In reply to @scottbeammeup "I'm on six month treatment, 73 days left to go. TBH, my emotions are all over..." + (show)
@scottbeammeup

I'm on six month treatment, 73 days left to go. TBH, my emotions are all over the map. I have periods where I go into a really dark place and feel "broken," like my physical body is walking around but my soul is off someplace else. These feelings for me are worse at nighttime when I've got nothing to do but sit around and ruminate.

The sexual side effects are also REALLY hard to deal with. Unlike most, I still get decent erections on ADT but am unable to have an orgasm which is extremely frustrating. I talked to a social worker but their advice was COMPLETELY unhelpful ("you can still have intimacy with someone by doing things like cooking a meal together"--that's called FRIENDSHIP in my book not ROMANCE).

I suppose I'm lucky in that my physical effects have been minimal. Insomnia, muscle loss but still able to do a decent workout and exercise a lot, a few cardiac issues in the beginning but those have smoothed out.

I hope when it's over that it was all worth it. I would encourage you to do ADT if you need it. I'm going to stick it out, but I've also decided that if it doesn't work I won't do it again because it has changed me too much from what I want to be (if that makes sense).

Other days I do OK. I am exercising a lot and that helps.

Jump to this post

There are types of romantic physical intimacy (kissing, massages, giving your partner an orgasm, etc) that are still fully possible on ADT.

I'm not saying you should be content with any of these, and I realise that I'm ignorant of your reality as a gay man. But your social worker could have given a better answer than "cooking a meal together" to someone who's still relatively young. 😕

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