Orgovyx side effects and handling them
Hi all I am new here and looking for some help. I have Prostate Cancer gleason 9 and starting Orgovyx today. I have tried to find the facts about side effects and how to help control or alleviate them. Read that some people have no side effects others have various ones. Would appreciate feedback from anyone who has been through the same scenario as I am about to. I have not started radiation treatment yet, I see the oncologst on the 27th, Thank you and I wish you all the very best.
Colm.
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
You won't know until you start it. I've had Salvage radiation while on ADT for 4 months and had one grade one hot flash. Anemia, some muscle loss, a little more around the waist up 6 pounds, with a little joint pain. Overall manageable. I am still an active mountain biker and have been told my frequent exercise regiment is helpful.
Yeah, I am blessed. Best of luck and I suggest not projecting too much until you actually experience the drug while being aware of what is out there to help.
Thanks for input. Right now day three on it and feel very nauseous. Maybe nothing to do with med but not normal for me.
My experience is like yours. Loss of libido. Wife older and past sex. I bicycle every morning for 30-40 minutes. Swim laps same amount every afternoon. I’m getting in better shape, although I have been healthy if not super-active and always ate well. Moderation? Well I’m not the sort 🙂
What others have said is good. I will add that only about 1/2 of guys will get back to the same level of testosterone they had before starting treatment and a good percentage won't even go back to low normal. The Orgovyx web site hides this stat a bit. For example, if you search for "normal testosterone levels" it's listed as 300-1,000 but the Orgovyx web site lowers "normal" down to 280 so that the stats look better. I'm seven months off it now after six months on and still not even at low normal when I was fairly high before treatment so still having lesser versions of the side effects I had while on it, especially insomnia and depression.
I have tried Embr Wave with little/no success. Can feel first cool wave then nothing much after- Embr wave company has made suggestions but to no avail. Does yours lessen effects, shorten flashes etc? Wish it worked for me. I have had great success with JisuLife, the portable fan that resembles a headset you wear around your neck- 5 speeds, rechargeable with phone wire.
I read that the device does not work for everyone, and I was not expecting it to work for me.
I still get hot flashes in the daytime, and I can feel the cold from the device as soon as I push the button twice - I don't think it lessens the hot flash but it gives me something else to concentrate on and makes me feel like I am doing something. I have to be careful because if you push the wrong button it gives you heat instead of cold, which is not good when you are having a hot flash!
I'm not sure how it works at night - I have it set on the highest cooling setting and I use the overnight cycle. When I turn it on with my phone I can feel the cold cycling on and off. I had been waking up multiple times covered in sweat but it now happens a lot less frequently and is not as severe.
I have complained to multiple doctors about the hot flashes and none of them mentioned this device. I ordered it after seeing a post on this blog.
I feel very lucky that it has helped. It is definitely worth $20 to try it.
Hi Folks. In month five, with shirt-drenching hot flashes worsening every month and more episodes of brain fog. Still exercising, still keeping weight off, every ache and pain worse than five months ago -- never forgetting the good -- PSA down 95% to 0.3, and making new friends including on this forum.
I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Can’t hurt to try it. Black Cohash is also said to help. Acupuncture works for some people.
I have an embrlabs.com wave product (wave 2). I’ve used it for Over three years now. It’s like a refrigerator that looks like a watch and sits on the inside of your wrist. You could set up one of the buttons for their night mode . Hit the button twice and It Produces cold waves at measured times during the night and prevents hot flashes and night sweats. They used to bug me, before I got this device . When you start to feel a hot flash coming on, you hit another one of the buttons twice and it sends cold chills through your arms and it reduces the intensity, shortens the life and can stop the hot flashes if hit quickly enough.
https://embrlabs.com/
We recently had consultations for possible RT and there are some side effects that are not much discussed here but can be hidden until they become serious and than "obvious", so I want to mention them.
Those are bone loss, cardiovascular disease and cognitive decline.
While hot flashes and ED are immediate and obvious, other possible side effects are more serious, not felt until problem arises and should be kept in mind.
Type of side effects and their intensity also depends of the length of prescribed course of ADT.