After radical prostatectomy and radiation treatment, I’m now on ORGOVYX and my testosterone has decreased from 672 to 11.
I’ll be coming off the medication in one month. If anyone has used ORGOVYX, do you stop cold turkey or is there a tapering off of the drug?
Thank you.
I stopped when last prescription ran out just over a week ago. I researched for cold turkey effects and found none. I continued my experience with hot flashes but they disappeared within one week. Also noticed some joint pain which I thought was normal has also disappeared after 10 days.
Even thought I exercise every day with weights and cardio, I picked up 10 lbs. So I am hopeful that this will also regress soon.
This is very helpful and I appreciate your comments about the hot flashes. That is the only side effect that has really bothered me. No joint pain, but I do get tired — and sometimes take an afternoon nap. Since radiation started in December (ended in Feb), I have been exercising everyday. Weights, spin class and yoga. That has helped with maintaining strength. Thanks for getting back to me.
I am on the same path as you and switched from unit my urologist to a new team at at NIC facility in Charleston SC. I now have a medical oncologist and a urologist oncologist. They extended the Orgovyx to two years and added Zytiga and prednisone. My radiation oncologist was very happy they made that move. If you are fairly healthy you might get the same. They are really going after every source of psa. Good luck.
Your comments and history are very helpful. My radiation oncologist is happy with my progress to date. Initially he thought I would require 2 years of ADT. However when the lymph node dissection revealed non cancerous tissue, he adjusted hormone therapy to just 6 months. Thanks so much for sharing your journey.
What is your PSA? How often do you have it tested and are you getting the ultra-sensitive PSA test? On Orgovyx, Abiraterone and Prednisone, and using LabCorp as my testing site, my T is "<3" and my PSA is "<0.006" - both are the lowest values they can test for. After RP and RT and you have not said how many months of Orgovyx, I would hope your PSA is absolutely undetectable. If you still have T of 11, while that is low enough to be therapeutic, you might want to try adding Abiraterone and see if you can get it down even lower. There are some studies that suggest the lower you get your T and PSA, the better the prognosis. Are you under the care of a Genito-Urinary Medical Oncologist? If not, you should do what you can to find one who specializes in PCa. Where do you live and where do you get your care?
I have been on and off Orgovyx several times now. As you have likely heard, a benefit is that it drops your T faster and it also recovers faster. I always test monthly because I want to see how quickly and how much it returns and see what, if any, PSA response you get. After RP, you are hoping for no response. Let us know how you are doing. You will feel better in a month or so post Orgovyx, but watch you PSA. Best of luck.
Thanks so much for this input. Very helpful , and I will definitely check out a Genito-Urinary Medical Oncologist — was not aware of that specialist. I am taking the ultra sensitive PSA test. And I get tested every 60 days. My care team at UCHealth in Denver are fantastic!
Thanks again.
Glad to hear that you getting treated at a great place! As to the "G-U MedOnc", that is just one of the specialties (central one) I have in my treatment team. Let's hope that your treatment has kicked your PCa to the door, but in the meantime, decisions about ADT are generally better made in consultation with a real specialist. Another suggestion: if you have not already done so, join a prostate cancer support group. I work with the Cancer Support Community which has branches all over the US. UCH Denver might have one, and if not, should start one. Information shared by other PCa patients is incredibly helpful - as you are experiencing with this chat service!
Thank you for the additional insights. There is a prostate cancer support group here. I joined just before my RP surgery. And I found the participants (6-8 guys) were engaged, thoughtful and supportive. But after about 6 months after my surgery (my PSA was 0.01 at this point) and I was giving guys encouragement because I was feeling pretty darn good.
Then a new guy joined who opted for radiation treatment instead of surgery. It didn’t go well for him. All he did was bitch about his ADT — he was on Lupron and complained each week we had our Zoom call. After the second week, I told the facilitator I was bailing out. I learned later other guys stopped participating.
One of the benefits of the Prostate Cancer Community is that we used licensed professionals to facilitate groups, or in my case, a Masters in Psych plus more than 4 decades of professional facilitation experience. We also screen people before we put them in our groups to make sure they are appropriate for groups. There are many other great groups out there if and when you have more treatment decisions to make.
Hi there. I’m under the care of an RO now as I get ready for radiation treatments and six months of Orgovyx. What would you say is the criteria to determine whether to start seeing a Genito-Urinary Medical Oncologist? Thanks.
I had hormone treatment after radiotherapy and the main effect was fatigue which persisted after I stopped the meds.
However, it's hard to tease out whether the tiredness is due to the drug or it's because I'm 75!!! I'm fit, swim a lot, have lost weight I put on during treatment but have a 30-minute snooze early afternoon.
I believe this, in my opinion, is an acceptable option to the alternative as I'm still here to reply to you.
All the very best for the future
You’re pretty darn funny! At 68 I’m looking forward to having your sense of humor when I reach 75. Thanks for you sharing your story.
This is something that your Doc should have told you before it became a question on your mind.
Greeting B & B,
First smart move was to marry your sweet wife/care giver, second smart move was to get out of Minnesota and move to Colorado.....third smart move is to start posting here.
Keep up the good work!!!
Good Luck, Good Health and Good Humor.
j-o-h-n
Pretty darn funny, j-o-h-n — thanks the message. You are spot on with #1 — 45 years strong with my better half. #2 — we wanted to be closer to our two sons’ families in Colorado. We love this grand parenting gig. And # 3 — I’m amazed (and grateful) for this online support group. You guys rock! Thank you all for getting back to me.
To Robert,
45 years? I guess it no longer makes sense to ponder a wander cause Elizabeth will make you a goner.....
Have fun with your sons......
Good Luck, Good Health and Good Humor.
j-o-h-n
I stopped cold turkey. My T was above 400 in 2 weeks and over 700 two months later. Good luck.
Those are impressive numbers! Thanks for your feedback.
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