just diagnosed 2 mos ago Gleason 8 2 lymph nodes

Posted by xahnegrey40 @xahnegrey40, 3 days ago

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..

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

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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Before starting the Orgovyx, did your doctor advise you of the need to engage in a robust resistance-training exercise program to minimize the side-effects of the hormone therapy?

Were your side-effects caused by the Erleada (apalutimide) or the Orgovyx?

I’ve never been on Orgovyx, but I’ve heard that you can’t just skip a few days and have it maintain its effectiveness.

The Orgovyx and the Lupron will have similar side-effects (because both result in significant reduction of testosterone). Resistance-training exercise is key in getting through it without it being your worst nightmare!

What treatments are you planning to get for your Gleason 8 along with the hormone therapy?

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Profile picture for brianjarvis @brianjarvis

Before starting the Orgovyx, did your doctor advise you of the need to engage in a robust resistance-training exercise program to minimize the side-effects of the hormone therapy?

Were your side-effects caused by the Erleada (apalutimide) or the Orgovyx?

I’ve never been on Orgovyx, but I’ve heard that you can’t just skip a few days and have it maintain its effectiveness.

The Orgovyx and the Lupron will have similar side-effects (because both result in significant reduction of testosterone). Resistance-training exercise is key in getting through it without it being your worst nightmare!

What treatments are you planning to get for your Gleason 8 along with the hormone therapy?

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thanks for your reply...yes I have missed 3 days in this first month..acclimating to Orgovyx...tomorrow is 30 days and I have 3 left...so not too bad...I think this very hot weather has exacerbated my side effects..the drugs seem to require ALOT of hydration !!

so I am scheduled for about 40 rounds of EBRT starting late Sept..

this is all pretty scary..for an older guy..all my life my PSa was around 1 or so..until May of this yr..it jumped to 40..it was .9 in Nov '23 I think..

I hope I am not doomed..but actually dont feel bad unless I dont drink enough water.. the sleep is problamatic at times..I hope that gets better.

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Weight loss may be linked to Erleada, but "fear and anxiety" are not common side effects of either drug. Please talk to your doctor about all this because I would suspect you are dealing with the overall weight of prostate cancer - we all are - and it is especially difficult in the early stages, but YOU CAN DO IT! Stay strong. Stay positive. You are NOT doomed! We're here for you man.

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Profile picture for smoore4 @smoore4

Weight loss may be linked to Erleada, but "fear and anxiety" are not common side effects of either drug. Please talk to your doctor about all this because I would suspect you are dealing with the overall weight of prostate cancer - we all are - and it is especially difficult in the early stages, but YOU CAN DO IT! Stay strong. Stay positive. You are NOT doomed! We're here for you man.

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well it was a total shock ( the diagnosis)..and it has been quite hot here in central texas and both those drugs dehydrate you..I found out the hard way..I used to be able to ride my bike 8 miles in 100 degree weather and barely sip water..but not on ADT...

I was a bit over weight..I was up to 230 in April..got into cottage cheese with honey as a snack..now down to 205 which is prob where I should ahve been all along..

so yes, making peace with all this has been a struggle..and I was fiercely independent..but it is tough aloneas I am finding out..

thank you for reaching out..it means a great deal..seems so many men are battling this unpleasant disease...

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Profile picture for xahnegrey40 @xahnegrey40

well it was a total shock ( the diagnosis)..and it has been quite hot here in central texas and both those drugs dehydrate you..I found out the hard way..I used to be able to ride my bike 8 miles in 100 degree weather and barely sip water..but not on ADT...

I was a bit over weight..I was up to 230 in April..got into cottage cheese with honey as a snack..now down to 205 which is prob where I should ahve been all along..

so yes, making peace with all this has been a struggle..and I was fiercely independent..but it is tough aloneas I am finding out..

thank you for reaching out..it means a great deal..seems so many men are battling this unpleasant disease...

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I was diagnosed in May with Gleason 9 and too many mets to count. You are not alone. I may not have a live in support group, or anyone within 500 miles, but I have here. So do you. Hang in there. We got this.

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Profile picture for mjp0512 @mjp0512

I was diagnosed in May with Gleason 9 and too many mets to count. You are not alone. I may not have a live in support group, or anyone within 500 miles, but I have here. So do you. Hang in there. We got this.

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yes...thank you for reaching out..if you ever want to talk, let me know and I will send you my cell no...like in Shawshank Redemption, hope is a good thing, maybe the best of things !

Good LUCK to us ALL !

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Profile picture for xahnegrey40 @xahnegrey40

yes...thank you for reaching out..if you ever want to talk, let me know and I will send you my cell no...like in Shawshank Redemption, hope is a good thing, maybe the best of things !

Good LUCK to us ALL !

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The Orgovyx will definitely mess up your sleep cycle - drove me nuts!!
Frequent naps do help, but working out with weights and cardio (in the AC!) is a MUST.

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Profile picture for heavyphil @heavyphil

The Orgovyx will definitely mess up your sleep cycle - drove me nuts!!
Frequent naps do help, but working out with weights and cardio (in the AC!) is a MUST.

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yep..cant get dehydrated on this stuff..so I cycle early morn 3-4 miles and sometimes late and meantime..just workout in the house with light weights...start back to gym in AUstin in mid Sept...so looking forward to that..

so much of this is mental..making peace with this bad hand...but from what I have read, good chance of long remission and perhaps cure with the ADT and pinpoint radiation on lymph nodes and prostate..I only hade 4 areas of prostate with cancer- 2 Gleason 8 very small and 2 Gleason 7 ( think is where breakout occured) which were a bit larger..too bad I didn get the PSA 6-8 months earlier..but it is what it is..

and at least I am in good company..the number of guys fighting this is amazing and makes me stronger..I apprecate ALL the comments and suggstions !!

Thanks BROS !!

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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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