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 jeff Marchi @jeffmarc

I started Lupron nine years ago. I had major hot flashes for a year, Multiple times a day, totally soaked from head to chest and with fatigue as the hot flash came on.. A year later my oncologist told me that a depo-provera Shot could help with the hot flashes. I got a 3 month shot And my hot flashes almost stopped for about a year. Then I became castrate resistant and went on Zytiga. The hot flashes came back And stayed with me for about another 2 1/2 years. I would wake up at night and the sheet would be totally wet under me. I started testing the Embrlabs Wave device, which helped a lot to reduce the intensity of the hot flashes. It essentially stopped my having hot flashes at night because it had a night mode That really works.

I switched to orgovyx And for five months the hot flashes stopped. They came back as hot as ever after that five month break. I was getting about 10 a day and My hair would be soaked with sweat dripping down into my eyes. About a month ago, I got another depo-provera shot. It didn’t stop the hot flashes, but it did reduce the intensity a little so that I’m only getting really sweaty two or three times a day, The rest of the hot flashes are a little milder and the wave device helps reduce them even more.

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Jeff:
I am amazed that in last 8 or so days, I have found the ORGOVYX very tolerable..I almost feel like my old self...prayers answered!! but I do continue to have hot flashes.. prob 10 or so /day..with prob 5 or so during the night..they last maybe 2 min at most, dont get soaking wet but feel flushed.
That being said, I am so grateful that I turned the corner on the ORGOVYX ! the Doc told me the first month was hardest..and I almost lost hope during that first 4-5 weeks..now sleeping pretty well, appetite returning..good energy.
I start radiation in late Sept. about 2 months 5 days /week..how miserable does that make you ?

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Profile picture for xahnegrey40 @xahnegrey40

Jeff:
I am amazed that in last 8 or so days, I have found the ORGOVYX very tolerable..I almost feel like my old self...prayers answered!! but I do continue to have hot flashes.. prob 10 or so /day..with prob 5 or so during the night..they last maybe 2 min at most, dont get soaking wet but feel flushed.
That being said, I am so grateful that I turned the corner on the ORGOVYX ! the Doc told me the first month was hardest..and I almost lost hope during that first 4-5 weeks..now sleeping pretty well, appetite returning..good energy.
I start radiation in late Sept. about 2 months 5 days /week..how miserable does that make you ?

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I am not sure what type of radiation you’re going to have.

I had IMRT salvage radiation for seven weeks and had absolutely no side effects from it.

Some people have fatigue others have urinary tract issues.

If you’re talking about SBRT to the prostate that can cause some urinary issues. I know a few people, including my brother that needed Flomax for a few months after that radiation. Some people have other issues with diarrhea.

If you’re having IMRT or EBRT It depends on how many sessions you’re having, I had almost 40 but these days they do it in 20 or so days because they give you more radiation every day. This does impact some people, more than those that have 40 sessions.

The thing is because nobody’s the same there’s no way of knowing how you are going to react.

When I switched from Lupron to Orgovyx I did didn’t get any hot flashes for five months, Then they started with a vengeance. If they’re really bothering you at night getting that wave device that I use really does stop them from happening at night. Check out Embrlabs.com, They have a 60 day moneyback guarantee.

I’ve written instructions out for how to configure the best way for both day and night so if you do get one get back to me.

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Profile picture for jeff Marchi @jeffmarc

I am not sure what type of radiation you’re going to have.

I had IMRT salvage radiation for seven weeks and had absolutely no side effects from it.

Some people have fatigue others have urinary tract issues.

If you’re talking about SBRT to the prostate that can cause some urinary issues. I know a few people, including my brother that needed Flomax for a few months after that radiation. Some people have other issues with diarrhea.

If you’re having IMRT or EBRT It depends on how many sessions you’re having, I had almost 40 but these days they do it in 20 or so days because they give you more radiation every day. This does impact some people, more than those that have 40 sessions.

The thing is because nobody’s the same there’s no way of knowing how you are going to react.

When I switched from Lupron to Orgovyx I did didn’t get any hot flashes for five months, Then they started with a vengeance. If they’re really bothering you at night getting that wave device that I use really does stop them from happening at night. Check out Embrlabs.com, They have a 60 day moneyback guarantee.

I’ve written instructions out for how to configure the best way for both day and night so if you do get one get back to me.

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I think I am having the EBRT..prob 40 or so sessions starting late Sept...I have 4 areas on prostate and 2 pelvic lymph nodes...
so can I ask what your diagnosis was ?? you seem to be holding up very well...I think your advice and exp is helpful since you have been dealing with PC for a while.. but good news is you are still here..hope that life for you is returned somewhat to your normal..I am not there yet but feel more hopeful now than I was late May thru early August- a new record low period in my life..and I have had a few- not from cancer but other things...PC diagnosis and being mostly abandoned by my urologist was very tough

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Profile picture for xahnegrey40 @xahnegrey40

I think I am having the EBRT..prob 40 or so sessions starting late Sept...I have 4 areas on prostate and 2 pelvic lymph nodes...
so can I ask what your diagnosis was ?? you seem to be holding up very well...I think your advice and exp is helpful since you have been dealing with PC for a while.. but good news is you are still here..hope that life for you is returned somewhat to your normal..I am not there yet but feel more hopeful now than I was late May thru early August- a new record low period in my life..and I have had a few- not from cancer but other things...PC diagnosis and being mostly abandoned by my urologist was very tough

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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. That’s why it keeps coming back.

I became mCRPC (castrate resistant 6 years ago. Here is life expectancy information about that. Sometimes I think I may be on borrowed time.

Median Survival: While the median overall survival (OS) for mCRPC patients is often cited as around two years, it's crucial to understand that this is a median, meaning that half of patients live longer than this, and half live for a shorter duration.

Individual Variation: Survival times vary greatly among mCRPC patients, influenced by factors like the extent of the disease (where it has spread, whether it is high volume or low volume disease, etc.), overall health, and response to treatment.

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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. That’s why it keeps coming back.

I became mCRPC (castrate resistant 6 years ago. Here is life expectancy information about that. Sometimes I think I may be on borrowed time.

Median Survival: While the median overall survival (OS) for mCRPC patients is often cited as around two years, it's crucial to understand that this is a median, meaning that half of patients live longer than this, and half live for a shorter duration.

Individual Variation: Survival times vary greatly among mCRPC patients, influenced by factors like the extent of the disease (where it has spread, whether it is high volume or low volume disease, etc.), overall health, and response to treatment.

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well good luck..you are now 15 + yrs in survival..and new therapies hit every few yrs...I think prob your mental toughness has been the key factor...I wish you many more yrs of good quality life.. you certainly deserve it..and your counsel has given me hope..!! hang in, bro !

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