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 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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My Doctor wants me to drink 80oz of water each day, at first that was a real challenge but my daughter told me about True Citrus which is small packets of crystallized fruits that you add to your water. I know it comes in four flavors, Orange, Lemon, Grapefruit, and Lime. My favorite is the Lime it is available on Amazon and I add one packet to 20oz of water taste great and really helped with my water intake. Ended up getting 500 packets of the lime for around $25. This has zero sugar and nothing added worth a try if you were like me and really struggled with the amount of water I have to drink.

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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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My Gleason score was 8 and my decipher score was .84 both saying aggressive. I have been on orgovyx for six weeks and started using the true citrus a little over a month ago

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Profile picture for MaxC @cobratk

My Gleason score was 8 and my decipher score was .84 both saying aggressive. I have been on orgovyx for six weeks and started using the true citrus a little over a month ago

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what is true citrus ?? what does it do ?? I have found I must drink WHOLE LOTTA WATER while taking ORGOVYX

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True citrus is like squeezing lime juice into your water but it comes a a dehydrated power that you just add. It gives the water a flavor and I have found that it makes drinking the 80oz of water each day easy. The packets are small and easy to carry around are about 5 cents each. Has really been a life saver for me on my water consumption

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Profile picture for MaxC @cobratk

True citrus is like squeezing lime juice into your water but it comes a a dehydrated power that you just add. It gives the water a flavor and I have found that it makes drinking the 80oz of water each day easy. The packets are small and easy to carry around are about 5 cents each. Has really been a life saver for me on my water consumption

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thanks.. yes..80 oz is a bit over 1/2 gal of water..and I would say that is about what is required otherwise, Orgovyx will f*** you up..I am hoping cooler weather will moderate that requirement..even indoors on a hot day, I can feel the water being pulled out of me.. weird stuff..before PC, I could ride my bike in 100 degree heat and maybe drink 1/2 litre of water and ok.. now it would prob kill me

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Profile picture for MaxC @cobratk

My Doctor wants me to drink 80oz of water each day, at first that was a real challenge but my daughter told me about True Citrus which is small packets of crystallized fruits that you add to your water. I know it comes in four flavors, Orange, Lemon, Grapefruit, and Lime. My favorite is the Lime it is available on Amazon and I add one packet to 20oz of water taste great and really helped with my water intake. Ended up getting 500 packets of the lime for around $25. This has zero sugar and nothing added worth a try if you were like me and really struggled with the amount of water I have to drink.

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My doctor has never told me to drink any specific amount of water because of the drugs I’m on. I’m definitely not drinking what you are and I have been on Orgovyx for two years and Lupron before that for 7 years.

One difference may be that I live in a city where it doesn’t hit 70° more than a couple of times in the summer, Usually closer to 65. So I don’t sweat a lot, Except when I have hot flashes (Around 10 a day).

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It is hot here in Texas I too am having hot flashes probably 10 a day but nothing so bad that I would actually break out into a sweat. Maybe the amount of water is helping I will keep drinking 😂

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Profile picture for MaxC @cobratk

It is hot here in Texas I too am having hot flashes probably 10 a day but nothing so bad that I would actually break out into a sweat. Maybe the amount of water is helping I will keep drinking 😂

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My hot flashes usually result in My hair being completely wet and it’s starting to drip down in front of my eyes. Very annoying when it drips inside your glasses.

On top of that, my chest gets wet.

You are fortunate to have such mild hot flashes.

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Profile picture for jeff Marchi @jeffmarc

My hot flashes usually result in My hair being completely wet and it’s starting to drip down in front of my eyes. Very annoying when it drips inside your glasses.

On top of that, my chest gets wet.

You are fortunate to have such mild hot flashes.

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How long have you been on orgovyx and when did your hot flashes result in the sweating you described

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Profile picture for MaxC @cobratk

How long have you been on orgovyx and when did your hot flashes result in the sweating you described

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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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