I would like to hear from anyone who is currently or in the past been prescribed and or are currently taking the medications Orgovyx and Xtandi for their specific prostate cancer.
For more information about me and my journey please refer to my profile posted 3/23/2025.
dad takes orgovyx and xtandi. What would you like to know ? 🤗
How long has he taken the 2 and has he had any adverse reactions. I had a heart attack back in 2005 and so I have some trepidation with regard to taking these drugs any longer than a year.
I will be taking my annual cardio workup in April and look forward to his opinion. Lastly, thank you for your k
thoughtful quick response!
I took Xtandi for approximately 10 months.
two years on Xtandi.
9 months on Xtandi, then it failed. Now on Radium 223
My husband took Xtandi for 9 years. Over the past year, his PSA has started to rise and this month the doctor took him off Xtandi. Have a meeting in two weeks to learn of next therapy. Xtandi was tough when he first started. Lots of side effects. He never cut the dosage and slowly became adjusted to it, but it was tough. Exercise made the difference. He is also on Lupron.
this describes me (4 yrs+ on Xtandi) plus Eligard ( leuprolide)...I have adapted, rough at times, SE's have subsided somewhat.
May I ask how old is your husband ? At anytime has he had any heart related issues?
Thank you so much for your quick, kind response.
He is going to be 67. Was diagnosed when he was 49. Yes, he has afib and heart disease, requiring a diuretic. I believe it is attributed to both the Xtandi and Lupron.
Hi Whatthef - I was diagnosed in March 2020 with high volume metastatic PCa (my profile provides details of diagnosis). I’ve been on the combination of ADT injections and Xtandi since. My psa is still undetectable & my T acceptably low. I think your approach to exercise is exactly right it seems to help with every side effect but especially fatigue. I found the hot flushes got less frequent & intense over time but I do take a Sage tablet every day (checked with my oncologist & he said it seems to help a good few of his patients & is ok to take). Good luck my brother Kind Regards Darren
Hey PSA680, thank you for your quick response and your informative bio. I just joined this group a day or two ago and I am quite surprised at the responses. I will complete my bio in the next few days. I plan to follow up with my docs regarding the sage tablet. Had a heart attack back in 2005 and over the last few years I have learned to ask a lot of questions and always get a second opinion, I am very concerned about the HERO trial results with regards to heart and seizure percentages, while small,they bring me to pause, and ask questions. Do you feel like you have had any adverse effects from Xtandi? My journey started in 2022 when I travelled to Mayo Clinic in Rochester to get a second opinion and a perennial biopsy that I could not get here in Wichita, Kansas!? Mayo thought the cancer was contained so we agreed on the SBRT with an injection of Lupron and a daily dose of bicalutamide. All went well til Mays 2024 PSA test and inJune 2024 I went back o Mayo for a full PSMA scan and we found the cancer had progressed to the iliac bone in two places and a related lymph node. With my oncologist blessing I had my 25 radiation treatments in September and October 2024 and started back with the ADT 3 month eligaard injection...results were suspect and a second eligard injection was given December 2024. Again little to no response so my doc then decided to move over to Orgovyx and Xtandi daily and as a result we now have achieved the numbers we were looking for. PSA 0.01 Testosterone 15. Thanks for your comments on exercising. Turning 74 next week and while I nothing close to my younger days, I am quite proud of Monday thru Friday routine and I am convinced above all that it will deliver lasting results and longevity to my life. Thank you again for your time ! Best regards, Bob
Hi Bob - my family has a history of heart disease but 18months after starting my ADT + Xtandi treatment I had a heart attack & they found my Right Coronary Artery was 95% blocked. Got some stents fitted & I feel fine now but will never know if the treatment contributed to the heart attack.
list of my side effects from ADT & Xtandi (don’t know which are attributable to which drug or if some are just the cancer):
Impotence & total loss of libido - a tough one to take
Fatigue
Sore joints - especially at night
Hot flushes
Minor short term memory issues
Tearful
But the treatments are keeping me alive & have done for 5 good years where I have been able to enjoy my family & smell the roses. I don’t regret going on the treatment.
Good luck brother
Good day to you Darren !
All of your information mirrors my family and my own side effects except for the sore joints at night. Quite amazing ! I'm hopeful that perhaps I can escape that one as I struggle enough as it is with all the other issues. That said, like you I am grateful for each day of life with my family. If you don't mind I will reach out again. It has been a pleasure and that good luck, I'm throwing it back at you-later.
Greetings whatthefxxx,
For info regarding "Orgovyx and Xtandi" patients/history, do a search of our H.U. History file for Orgovyx and Xtandi. There are tons of matches there. "Search Health Unlocked" can be found in the top left portion of the screen.
Good Luck, Good Health and Good Humor.
j-o-h-n
Started taking Orgovyx. Starting in week 3. SE are hot flashes and slight depression. Was on Lupron , abiraterone and Prednisone for 16 months before I took almost 6 months no med vacation. . So Orgovyx is still very new to me.
Thanks Slugger for your response, My first doses was February5, I was tested last week and both my PSA 0.01 and Testosterone 15 are now inline with what my oncologist wanted to achieve. I spend an hour to 90 mins at my local YMCA....walking easy jogging 3-5mi. Plus found a small group of cancer patients to take a little weight training with. I mention it in response to your feeling some slight depression,Just a thought, thanks again for your kind response.
Thanks for replying..I do exercise and walk. I try to do both in daily basis. Orgovyx is new to me. Exercise does indeed help keeps the blues down. I went 2 days with doing bi exercises or walk and felt depressed. Plus I started back today exercising and it feels like I missed a week of it. So trying to stay one step ahead of the meds SE
10 years Xtandi mono therapy.
Thanks David for your response....I had a heart attack back in 2005. Since I am just 2 months in on taking Xtandi and Orgovyx I am concerned about the long term effects. This combo is working as my PSA is now 0.01 and my Testosterone is 15. Have you had any adverse effects?Thanks again.
Initially the usual for ADT, flushes and nightsweats.Haven't had them in years however.
Extensive bone mets. After 8 cycles Doxatexal started Xtandi. With Lupron of course. So 7 and a half years of Xtandi. I take at bedtime and don't seem to suffer adverse effects. I'm naturally lazy, so who knows. My last scans were very good, but PSA is slowly rising. 1.0 now and will retest about middle of April. I also take one Celebrex daily. I'm not recommending that. I am finally at the what do I do next. I think I can just stay with Xtandi for another year. We shall see.
I’m taking Orgovyx but am on Zytiga versus Xtandi. I’m tolerating Org well, but am having issues with the Abi. Was doing well for 4 mos at the half dose (500 mg) but upped it to the prescribed 1000 mg about 6 weeks ago. Primary SEs that are worse are nausea, fatigue, brain fog, and overall lethargy. Not sure I can keep this up for another 18 mos. Hot flashes have tapered off a bit.
Thank you for this information...I am so early into these two new meds at 7 weeks...I hope to some how determine which med is generating what SE. I am also quite concerned about my heart due to a heart attack in 2005. My doc has also prescribed this care for 24 months and I am uncertain at this time if I can handle these same side effects your having for that period of time without a holiday. Which also raises the question, is it necessary? Thank you again
My husband has been on Orgovyx for 18 months, and was on Abiraterone for 12 months. He discontinued the Abiraterone in December 2024 due to concerns regarding cardio toxicity .
He had a 4 cm Aortic Root Aneurysm before he started treatment for his prostate cancer in 2023.
It has grown rapidly since then , 4.9 cm on CT angiogram in January of this year ( 5.1 cm on Echo)
Also he now has moderate to severe regurgitation in his Aortic Valve. Cardio thoracic surgeon has recommended open heart surgery, for valve replacement and aortic root graft.
We don’t know how much his Prostate cancer medications have worsened his heart health.
It is scary to think about him having open heart surgery while he is already experiencing muscle loss and fatigue from the meds. He also has mild anemia either from the ADT or rectal bleeding caused by radiation proctitis.
First of all, my thoughts and a prayer are with you both! While I had my heart attack in 2005, I am very concerned about my heart health going forward. Right or wrong, I do believe that heart issues would take priority over prostate/oligometastases, in my case bone and lymph nodes.The responses I am receiving seem to indicate that the Orgovyx may in fact be more tolerable than the Xtandi. At this time, I am unable to sleep more than 1-2 hours with out waking up due to night sweats / hot flashes. Additionally, I also have some rectal bleeding that has persisted now for 5 months after my radiation therapy. I do have a bidet/Toto, toilet seat that I could not imagine living without! I will share with you that I have made exercise a daily priority at age 74 . I truly believe that exercise and diet are as important as any one drug! I hope you don't mind me sharing that with you folks. Thank you so much for your time. Good luck, to both of you. I am curious, how old is your husband?
My partner is in month 9 of a 24-month course of Orgovyx, combined with 26 days of radiation. He received two cardiac stents 6 months prior to pc diagnosis and an implantable defibrillator placed 1 month prior to starting ADT.
We had his 6-month check-in with the heart failure specialist yesterday. His EKG is normal and a recent echocardiogram showed that his ejection fraction improved from the low 30s to 49 during the time he has been on Orgovyx.
His MO has elected not to use Zytiga + prednisone for the time being because he is responding so well to Orgovyx and radiation (PSA down from 36 to 0.01). She doesn't think the potential cardiac side effects of Zytiga + prednisone are justified right now.
Best of luck to you.
Thank you so much for your response.... I have had a heart attack albeit 2005. That resulted in placement of three stents. While some lifestyle changes and routine heart related meds have kept me heart healthy for 20 years I am now very concerned about my heart health with regard to these two newer medications for my oligometastases prostate cancer. If you don't mind ,how old is your partner and is he suffering any side effects from Orgovyx at this time? Again, thank you for this valuable information and your considerate response, Bob
Suze, I too am on Orgovyx, 3 months now. Most common side effect is hot flashes but I haven't had my heart checked since taking O. I just made the final (maybe) decision to get radiation. Could you tell me a little about your partners reaction to radiation treatment?
Thanks
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