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Zytiga and Orgovyx: What helps side effects, fatigue and disinterest?
Hi,
My husband, who is 71 y/o, has recurrent prostate cancer, after 7 years of no treatment. He underwent a proctectomy 7 years ago and has 1 lymph node involvement. In January, he had COVID which left him tired, no smell or taste. His PET scan in February showed lymph node involvement in the pelvic area with a PSA of 9. In April, he was started on hormonal therapy (zytiga and orgovyx). First month, he did not exhibit any symptoms, second month he started with mild hot flashes at night. PSA is undetectable (0.01) after 2 months of treatment. However, after he takes the Zytiga mid-afternoon he is very anxious, emotional, and continues to be exhausted.
He is depressed and his appetite has decreased. He lives a sedentary life. He is always tired and not interested in things that brought him happiness. He is on the computer most of the day. When we go out, he comes home to rest. Is anyone experiencing these side effects? Any recommendations would be appreciated.
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I'm in a similar situation with metastatic cancer in lymph nodes and 10 years since prostatectomy. I've been on eligard/orgovyx and zytiga(with prednisone) since October 2022. --- My suggestion is to stay active, i also work at a computer and take 3 small walks during the workday and have 2lb weights to do light lifting during conference calls and webinars. I need 9 hours of sleep to be well rested, otherwise i get tired and/or have to rest after work. -- stay positive and active, that's my advice
Hey Jane,
Although I agree this is not a good situation, I think to some degree it may be understandable.
I've never taken this combo but I'm still taking Orogovyx. Other things aside, he may be tired because of the lack of sleep. A good night sleep can be very elusive when you're experiencing 2-4 hot flashes at night. I know that it is for me. I don't have any experience with the Zytiga meds.
My response to this has been to stay very active with the thought that my body will take the sleep that it needs when it needs it. This is pretty much what happens. I don't get the sleep I may like to have, but I get what I need (hearing a Rolling Stones song suddenly) Having said that, if I'm home, after a workout in the afternoon, a nap is just what the dr ordered. (literally)
He may also be experience a mind set of "this is the rest of my life" in regards to the medication and side effects, that's tough for anyone to be able to push back in their minds and concentrate on the good things available to them.
My only suggestion is to try to accentuate that the drugs are working without being too pushy, accentuate the positive as it were. Also if it's an option, the opportunity presents itself, I might consider telling his primary medical care person (surgeon, urologist ?) of how you see the situation, privately, and see if he / she can offer any assistance / advice. After all, the disease is having an effect on the entire family.
Best of Luck to you and him!
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3 ReactionsWeb265 articulated my first thought: After 7 quiet years, it must be a pretty big emotional blow to have the cancer reappear.
I know that it was a major disappointment for me when my 1st postop PSA was not undetectable at 0.19.
Counseling may be appropriate, including for you and your "loss" of an active partner.
ADT agents seem to result in different side effects for different patients.
Maybe discuss w/ Med Onc a different ADT in the same class.
I try to walk daily about 45/50 mins and lift light weights 2/3 times weekly. Certainly gives me a sense of accomplishment in addition to mental and physical health benefits.
Good luck to all.
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1 ReactionJane. Your husband is a couple of years younger than me and I found after surgery and ADT and Erleada and my doctor advising me that my life expectancy was just a few years that I was depressed, slept poorly etc. I told my gp that I was depressed and he prescribed trazodone 50mg, for sleep and depression. I found that it made me too tired during the day and I cut the pills in half. That helped me. Also I walk some in my neighborhood with my Apple ear plugs in listening to Paul Simon music and that helps too. Returning to being good is a long shot, but this routine has helped me. Best of luck to you and your husband. We all hope to exceed our prognosis.
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1 ReactionHi,
Thank you for your reply. I think that is the key to stay active and not dwell on the disease. I continue to encourage my husband to take walks, and I even purchase 5 lb weights for muscle strength. I will continue to persuade him. We went to our oncologist for a routine visit, and he prescribed Remeron and will reevaluate him next month to determine if the Rx should be decreased. I appreciate your feedback. Best of luck to you too.
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1 ReactionHi,
I appreciate your feedback. That is a contributing factor as well. He has been preoccupied with his disease and trying to overcome his fear. We went to his oncologist, and he prescribed Remeron. On our next visit, the oncologist will reevaluate the situation. This is not my husband's behavior. He recognizes it and feels terrible that he has no control over the situation. I am hoping the Remeron will help. Thank you again. Best of luck to you as well.
Hi,
We went to his oncologist, and he ordered Remeron. Next visit, he will reevaluate to determine if my husband's medication should be treated. My husband is reluctant to make any changes, because his PSA is undecidable. However, it's impacting his quality of life. I have been searching for a support group or counseling for us to attend. It would benefit him if he heard others experiencing the same situation. He lost his best friend a few months ago from a sudden death. That was devastating for all of us, as it was unexpected. They spoke daily, and I know there is a void. I have to say it's difficult to find a support group in our area for prostate cancer. Most support groups are generic. A few support groups I came across were in other states. I stumbled on this forum. However, I will keep looking. I agree, the key is to exercise, which I will continue to encourage. Thank you for your feedback. Best of luck to you as well.
Hi,
Thank you for your feedback. We went to the oncologist, and he prescribed Remeron. At first he was reluctant to take it, because he is not one to take any medication. especially antidepressants. However, he agreed to take it. On our next visit, the oncologist will reevaluate him and consider decreasing the dosage. My husband recognizes this is not his behavior and keeps apologizing for it. Hopefully, this will help him deal with his anxiety and fear. I will keep encouraging him to walk!! Best of luck to you, as well.
I just started taking Orgovyx and after about 5 days I began experiencing issues with heart palpitations and tightness in my throat and issues swallowing. It was uncomfortable but not terrible but I decided to stop taking it until I spoke with the Dr.
After a small break of about 5-6 days I started taking it again (1 day in so far and just took my second) and it’s been ok so far but I think it takes about one month or so to truly see the side effects.
I was offered Lupron and Eligard as an alternative (not sure if one is better than the other). Thinking about switching to Lupron.
One thing that helps me is taking a decent nap mid day around 2:00 or so. I also take vitamin D which helps keep my energy up. Be careful with some vitamins and supplements as there are some things you shouldn’t take while on hormone therapy according to my Dr. Vitamin D and Calcium are necessary supposedly. Research it.
Hi,
My husband is taking Orgovyx and Zytiga, and did not experience any side effects until the second month, after his PSA was undetectable. He still feels anxious, dizzy, tired, and has hot flashes at night. Going on 4 months now. Sorry to hear you experienced worse side effects. I will discuss taking Vit. D. with his oncologist.
Best of luck to you.