just diagnosed 2 mos ago Gleason 8 2 lymph nodes

Posted by xahnegrey40 @xahnegrey40, Aug 10 5:47pm

so I was prescribed orgovyx and erleada ..started July 11 with great aplomb in doc's office..3 orgovyx and 4 erleada..however..the side efects have forced me to stop erleada for now ( did about 2 weeks) and had had to skip a few orgovyx days..
doc asked if I wanted to go to 1 mo injectible lupron.. but I think I want to stay on orgovyx and hope side effects ( trouble sleeping, pounding heart..anxiety) will dispell.. what a nightmare this has been.. I am 73, otherwise in good health..only good thing so far is I have lost 20 lbs mostly from fear, anxiety, loss of appetite..
I have found in central texas, when the temps are around 100, you MUST drink ALOT of Water..

I am welcoming all comments and suggestions.. I am all alone here..mighty scary.. trying to John Wayne thru it..

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Profile picture for pjsatz @pjsatz

I am on Orgovyx alone for a little over 4 months and the side effects have been fatigue, hot flashes but not unbearable. Abiraterone had bad side effects for me I could not continue in it. I used to live in Central Texas (Austin) and totally understand about the summer, have to be real careful to not overheat. Getting used to drinking a lot of water may help for radiation. They may want you to fill your bladder as part of preparation for each visit. When the bladder is full it is supposed to lift the bladder and get it further away from prostate. But check what is appropriate for you of course. Are they planning a spacer (SpaceOar) for radiation? It helps get the rectum out of the radiation field, it is not good to radiate the rectum from what i understand.

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yes..I think I am getting the hang of ORGOVYX...gotta stay very hydrated..I think over time the sleep will adjust...yes, they are gonna put a spacer in my butt...hope a cute nurse does it.

after being somewhat of a horn dog my whole life, I now find the thought of sex a bit revolting..I mean it just doesnt interest me and it can cause PSA to rise and all that..my most favorite hobby turned on me !!! wtf ??

well maybe down the road, I can get back in that game..but I am 73 now.. but hit the free love sweet spot back in the day..romance is not what it used to be anyway..how did we all end up here ??

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Profile picture for jeff Marchi @jeffmarc

Erleada (apalutamide) causes a many people issues with side effects, same with Xtandi (Enzalutamide).

Nubeqa (Darolutamide) Has the least side effects of all of the lutamides, It doesn’t pass the blood brain barrier so it doesn’t have brain fog issues, And it has very few side effects for most people.

I’ve been on it for about two years and it’s been working great I have no noticeable side effects from it And I’ve been undetectable for the last 20 months.

Ask your doctor if you could have that instead of Erleada.

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Does your insurance cover Nubeqa?

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Profile picture for jeff Marchi @jeffmarc

Erleada (apalutamide) causes a many people issues with side effects, same with Xtandi (Enzalutamide).

Nubeqa (Darolutamide) Has the least side effects of all of the lutamides, It doesn’t pass the blood brain barrier so it doesn’t have brain fog issues, And it has very few side effects for most people.

I’ve been on it for about two years and it’s been working great I have no noticeable side effects from it And I’ve been undetectable for the last 20 months.

Ask your doctor if you could have that instead of Erleada.

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yes I will do that this week..

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Profile picture for kenshabby @kenshabby

Does your insurance cover Nubeqa?

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Yes. Medicare covers it.

I know a lot of people on Nubeqa.

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Profile picture for xahnegrey40 @xahnegrey40

yes..I think I am getting the hang of ORGOVYX...gotta stay very hydrated..I think over time the sleep will adjust...yes, they are gonna put a spacer in my butt...hope a cute nurse does it.

after being somewhat of a horn dog my whole life, I now find the thought of sex a bit revolting..I mean it just doesnt interest me and it can cause PSA to rise and all that..my most favorite hobby turned on me !!! wtf ??

well maybe down the road, I can get back in that game..but I am 73 now.. but hit the free love sweet spot back in the day..romance is not what it used to be anyway..how did we all end up here ??

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I was much the same lol, and at the risk of even more people moving there, Texas is the best for that!! But I’m not too concerned with most of us here taking up a new hobby 🙂

For my spacer a stern male nurse had me lay on my back, put my legs up in the air and into some kind of contraption. The doctor came in and showed me what looked like a 3 foot long needle. He said it’s too bad we have to meet like this. I told him I wouldn’t have it any other way, He said yeah, just a typical night out for you. I about died right there laughing. He then deployed the needle so I dunno if I would get my hopes up too high :)) but there was lubrication involved :)), oh joy

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Profile picture for pjsatz @pjsatz

I am on Orgovyx alone for a little over 4 months and the side effects have been fatigue, hot flashes but not unbearable. Abiraterone had bad side effects for me I could not continue in it. I used to live in Central Texas (Austin) and totally understand about the summer, have to be real careful to not overheat. Getting used to drinking a lot of water may help for radiation. They may want you to fill your bladder as part of preparation for each visit. When the bladder is full it is supposed to lift the bladder and get it further away from prostate. But check what is appropriate for you of course. Are they planning a spacer (SpaceOar) for radiation? It helps get the rectum out of the radiation field, it is not good to radiate the rectum from what i understand.

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my biggest issue is I do not sleep well on the ORGOVYX..I have been told the first month is the worst..I dont have restful sleep..almost dread going to bed cause I know its gonna be an ordeal to get to sleep ... any suggestions ??

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Profile picture for xahnegrey40 @xahnegrey40

my biggest issue is I do not sleep well on the ORGOVYX..I have been told the first month is the worst..I dont have restful sleep..almost dread going to bed cause I know its gonna be an ordeal to get to sleep ... any suggestions ??

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Hey man! I've tried magnesium the last couple nights and I gotta say it does help. I'm on Eligard and have the same kinda sleep issues. It's worth a shot, IMHO. Good luck to ya man, you got this!!!!

Doug

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Profile picture for xahnegrey40 @xahnegrey40

my biggest issue is I do not sleep well on the ORGOVYX..I have been told the first month is the worst..I dont have restful sleep..almost dread going to bed cause I know its gonna be an ordeal to get to sleep ... any suggestions ??

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I am not sure, I have had some sleep issues for a long time though so not sure. The Orgovyx and this process have made me more tired and I fall asleep faster. I wake up more during the night to go to the bathroom and that has increased with radiation. My sleep in general is also more restless with all this. I assume you should check with doctors of course.

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Talk with your doctors about side effect symptoms, and about your life goals. Don't skip Orgovyx. I'm 73, had PSA 6.4 last August, diagnosed Gleason 7 (3+4, 4+3) in November and also in iliac lymph nodes (N1M0) through December PSMA PET scan. I started Orgovyx Christmas Eve, then had 44 radiation treatments (26 general pelvis, 18 prostate-specific) during February-April. In May, blood test showed PSA .01 and Testosterone 0. I continue to have virtually every side effect listed on https://www.orgovyx.com/ . Dr.s seem only to be trained to attempt cures rather than focus on quality of life, and considering my overall condition and family history, I anticipate < 10 years, regardless, so I'll be having a conversation this fall about shortening or otherwise changing my treatment plan. I live in the Fort Worth area. If I can be helpful, let me know!

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Profile picture for jime51 @jime51

Talk with your doctors about side effect symptoms, and about your life goals. Don't skip Orgovyx. I'm 73, had PSA 6.4 last August, diagnosed Gleason 7 (3+4, 4+3) in November and also in iliac lymph nodes (N1M0) through December PSMA PET scan. I started Orgovyx Christmas Eve, then had 44 radiation treatments (26 general pelvis, 18 prostate-specific) during February-April. In May, blood test showed PSA .01 and Testosterone 0. I continue to have virtually every side effect listed on https://www.orgovyx.com/ . Dr.s seem only to be trained to attempt cures rather than focus on quality of life, and considering my overall condition and family history, I anticipate < 10 years, regardless, so I'll be having a conversation this fall about shortening or otherwise changing my treatment plan. I live in the Fort Worth area. If I can be helpful, let me know!

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yes that is helpful !! I am 73 also..I had 2 lesions in prostate that were Gleason 7 and 2 smaller Gleason 8 ( 4+4) and 2 lymph nodes nearby...which made it were complicated of course..however, with the new radiation, it seems they can cure many even with lymph node metas...
I did skip orgovyx a few times when I got very dehydrated..the drug demands lots of water here in central texas with 100 degree heat..I had no idea..but starting month 2 tomorrow with better understanding.. of course, you shouldnt miss days but the 1/2 life of orgovyx is 25 hrs..so if you do, you system is carrying quite a backload of the drug for a few days off ( according to their pharmacists)..he said he expects dome people with dose eveyr other day depending on their prognosis and side effect tolerance in coming yrs..

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