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.
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On month two. Hot flashes getting way more frequent but some of that is due to the fact that it is getting hot, i think. Did you have surgery?
Are you on a 6 month regimen of Orgovyx?
Just started a week ago. Urologist said two years of Orgovyx
It's obviously not pleasant, but not as bad as I thought it would be.
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/
Stage IV with metastasis on my pelvis and lymph node (one lesion each). I’ve been on Orgovyx and Nubeqa for 7 weeks. I was really dreading it as I’m sure you are. I’ve had several side effects, most unpleasant but all have been manageable and overall less than I expected:
Loss of libido
Afternoon fatigue
Less endurance when doing physical activity
Brain fog
Mild hot flashes
I have found that daily exercise, especially circuit weight training (2-3x/week), is a game changer. It’s tough to get motivated to get off the couch, but once I do, I am reinvigorated by exercise.
I do my best to keep a positive attitude which I think is also key.
I’ve also set several goals like seeing my grandbabies graduate from high school. It’s these goals that remind me why I have to keep fighting and pushing. Every day is a gift and I am truly blessed to have each one. I try not to worry about the future and instead live in the present taking it one day at a time.
I wish you all the best of luck on your journey!
I have been on Orgovyx for six months. My Radiation Oncologist is doing the second process of High-Density Radiation HDR is telling me that after the last treatment of HDR on the 23rd of May I can stop using Orgovyx . He stated six to seven months is the max to use it. I have had two other radiation Oncologists say the same "six to seven months" max.
However, a General Oncologist told me two years. Mmmm I am going to stop taking it on the 23rd.
I think their main concern is the damage to my bones. I am 76.
A little backup info in 2019 I went through 45 external beam radiation treatments and was on Lupron. The cancer came back a few years ago so the HDR treatment is now being done. I chose the HDR because of the higher percentage of success. 90 to 95% success with HDR vs 80 to 85% External Beam Radiation.
My old urologist had recommended the external beam back in 2019. I will never see him again because he recommended Cryotherapy this time around. almost nobody uses cryotherapy anymore.
I believe that an Oncologist "trumps" whatever a urologist suggests. If you have cancer listen to or see a cancer doctor.
"Positive Attitude" is very important!! as previously stated!
How long you stay on ADT is usually based on your Gleason score. If you are a Gleason seven then six months is the amount of time ADT is recommended, Unless there are other issues with the biopsy like cribriform or Seminal vesicle invasion, which can make the cancer more aggressive.
While an oncologist does trump a urologist opinion, unless that oncologist is a Genito Urinary Oncologist, they may not be much better than the urologist in making suggestions. GU oncologists Specialize in prostate cancer and have information of the latest treatments, A medical oncologist doesn’t keep up with prostate cancer alone since they work with all different types of cancer.
Always remenber that PC is full of controversy and outright falsehoods from oncologists as to SE's and especially RP. Inform yourself from others on this site. They will have the best info about treatment outcomes more than any one oncologist. You are correct, some have very mild SE's, others are unbearably horrible and can include suicide. Oncologists don't like an informed patient at all . Hard questions really throw them I have found as well. Most seem to suger coat their diagnosis. Makes you feel better in the short term but is so cruel as to the truth about your PC. PC is a horrible,ugly, relentless adversary that is sadly WAY under publicised even today WOW!
So get busy and READ,READ,READ, about your condition. Please take the time to educate yourself.
Lacco
My husband has been on Orgovyx plus Xtandi for over 2 years. No surgery because it has metastasized in bone and lymph node. He has PSA blood draws every 6 weeks, if it's over 2.0 he stays on the meds, if it's under he can take a "vacation", no meds. The side effects never go away. He has hot flashes during the day and night sweats throughout the night. He has a fan set up on his side of the bed which helps some.
He's learned to accept it for what it is - holding his cancer at bay until something better comes along.
I have just been put on Orgovyx , I was diagnosed in February and not seen an Oncologist yet. Trying to find out what to expect and to find out how well Orgovyx holds back the progression. I am fortunate that my PC is contained in my Prostrate. Any info would be greatly appreciated.