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..

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

Profile picture for xahnegrey40 @xahnegrey40

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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It's interesting to me how ADT affects patients differently. I'm just a little north of you with very similar temperatures, and I haven't noticed needing more hydration other than what is typical if working outdoors in summer. I'm glad to hear about Orgovyx being more forgiving in the case of a missed or different dose. I'm on another medication, twice daily, that if I miss one dose I am told I am not covered during that 12 hour period. I have an interesting diagnosis, in that my radiation oncologist accepts the PET evaluation that I have lymph node activity and my surgical/hormone therapy oncologist believing the PET scan was misread. After seven months of ADT, there's very little masculinity remaining, so I'm hoping to stay on the therapy as short a time as is practical to manage the disease successfully. All the best!

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Profile picture for jime51 @jime51

It's interesting to me how ADT affects patients differently. I'm just a little north of you with very similar temperatures, and I haven't noticed needing more hydration other than what is typical if working outdoors in summer. I'm glad to hear about Orgovyx being more forgiving in the case of a missed or different dose. I'm on another medication, twice daily, that if I miss one dose I am told I am not covered during that 12 hour period. I have an interesting diagnosis, in that my radiation oncologist accepts the PET evaluation that I have lymph node activity and my surgical/hormone therapy oncologist believing the PET scan was misread. After seven months of ADT, there's very little masculinity remaining, so I'm hoping to stay on the therapy as short a time as is practical to manage the disease successfully. All the best!

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how old are you ? and what meds are you on ? as for the PET scan..there is very little to doubt with the PET scan...they light up even with just a few cancer cells.. much more accurate than scans of 5-10 yrs ago or more...the question is how quick are those cancer cells gonna grow..etc..sometimes your immune system keeps them in check...the hormone therapy definitely shuts them down..

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Profile picture for xahnegrey40 @xahnegrey40

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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There is no cure for Gleason eight. At best you get remission for a while. Since it’s already spread outside the prostate, it’s in your bloodstream and can pop up anywhere. ADT and an ARSI will stop that from happening, for a while.

You are a Gleason eight the sevens are irrelevant.

The half-life of Orgovyx does not mean it stays in your body for a long time. It means that it’s usefulness is gone after 25 hours. Your testosterone will start to rise if you do not keep up the pills daily, And that will feed the cancer.

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Profile picture for xahnegrey40 @xahnegrey40

how old are you ? and what meds are you on ? as for the PET scan..there is very little to doubt with the PET scan...they light up even with just a few cancer cells.. much more accurate than scans of 5-10 yrs ago or more...the question is how quick are those cancer cells gonna grow..etc..sometimes your immune system keeps them in check...the hormone therapy definitely shuts them down..

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turning 74 next week; Orgovyx, Eliquis, Synthroid, Dialtezem, Atorvastatin, Famotodine, Tadalafil, Tamsulosin, Myrbetriq, along with various vitamin/mineral supplements; one oncologist believes urine was misread as cancer cells in the iliac lymph nodes.

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Profile picture for jeff Marchi @jeffmarc

There is no cure for Gleason eight. At best you get remission for a while. Since it’s already spread outside the prostate, it’s in your bloodstream and can pop up anywhere. ADT and an ARSI will stop that from happening, for a while.

You are a Gleason eight the sevens are irrelevant.

The half-life of Orgovyx does not mean it stays in your body for a long time. It means that it’s usefulness is gone after 25 hours. Your testosterone will start to rise if you do not keep up the pills daily, And that will feed the cancer.

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thanks for the info..the reason I stopped several times ( longest was 2 days) was I did not realize how much Orgovyx and Erleada dehydrated me..I am learning that if I drink enough water/ gator ade, I can sleep well and tolerate the drug...I literally have to drink water all day when the temp is over 95...

so what was your Gleason ? and how long have you been doing this ?

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PSMA-targeted therapy is one of the most promising treatments available for advanced prostate cancer," says Dr. Childs. "The therapy binds to a protein on the cell called PSMA in order to deliver radioactive particles directly to the cancer.

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Profile picture for xahnegrey40 @xahnegrey40

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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Have you gotten a second opinion? After I was gifted with PC, at the suggestion of some people here I went for a second opinion at both Mayo and MD Anderson. I'm currently going to Sloan Kettering and after the second opinions, all of them gave me the same course of action in attacking this.
Having those opinions really put me to rest for all questions I had. Medicare didn't have an issue with those at all.
I told my doctors that I did that and they were glad I did, so don't be afraid to ask other professionals about your condition.
Best of luck, as we all need that!! I'm still waiting for that magic pill that will take all this away!

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Profile picture for xahnegrey40 @xahnegrey40

thanks for the info..the reason I stopped several times ( longest was 2 days) was I did not realize how much Orgovyx and Erleada dehydrated me..I am learning that if I drink enough water/ gator ade, I can sleep well and tolerate the drug...I literally have to drink water all day when the temp is over 95...

so what was your Gleason ? and how long have you been doing this ?

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In 2010 I was 62 and a biopsy showed Gleason 3+4. Had surgery, after surgery they told me it was a 4+3. It was only stage two. 3.5 Years later it came back and I had radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1 year later went on Zytiga, which kept my PSA down for 2 1/2 years., After some AFIB Issues I switched over to Nubeqa, The last 20 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped. I did not find out I was BRCA2 Until four years ago. I am 77 now, so even with a serious genetic problem, I’m still around..

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Profile picture for jeff Marchi @jeffmarc

In 2010 I was 62 and a biopsy showed Gleason 3+4. Had surgery, after surgery they told me it was a 4+3. It was only stage two. 3.5 Years later it came back and I had radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1 year later went on Zytiga, which kept my PSA down for 2 1/2 years., After some AFIB Issues I switched over to Nubeqa, The last 20 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped. I did not find out I was BRCA2 Until four years ago. I am 77 now, so even with a serious genetic problem, I’m still around..

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you inspire me..I am hoping to ride a few more waves and enjoy some life- this ADT makes it hard to feel like your old self...I hope one day they have new targeted therapies that go right to the cancer cells and stop their growth..and we can leave all this ADT /cancer stuff behind..

thank you Jeff !! for all your insights !!

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Profile picture for bonanzaman @bonanzaman

Have you gotten a second opinion? After I was gifted with PC, at the suggestion of some people here I went for a second opinion at both Mayo and MD Anderson. I'm currently going to Sloan Kettering and after the second opinions, all of them gave me the same course of action in attacking this.
Having those opinions really put me to rest for all questions I had. Medicare didn't have an issue with those at all.
I told my doctors that I did that and they were glad I did, so don't be afraid to ask other professionals about your condition.
Best of luck, as we all need that!! I'm still waiting for that magic pill that will take all this away!

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yea...I mean the protocol for PC ( biopsy and PET Scan confirmed) is basically the same everywhere. ADT followed by EBRT focused radiation...and then contine ADT for prob 1 yr or so...PET scans to see if you recurred...
you can listen to Dr Scholz and Alex discuss just about all permutations of PC on YouTube...its not necessarily a death sentence..and the disease can now be controlled pretty well..even Joe Biden Gleason 9 with bone metas is prob gonna let him go 3-5 more yrs. maybe 10 yrs...and he is 82...

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