HELP WITH SIDE EFFECTS FROM ENZALUTAMIDE

[Desrochers]

In 2019 after a prolonged bout of diarrhea a blood test was ordered, the cause of the diarrhea was not discovered but the test indicated bone cancer. From there tests showed extensive bone mets and grade 9 Gleason APC. Chemotherapy radiation and firmagon followed. My psa went way down for about 18 months. when it went up I discontinued firmagon and was put on Eliguard once every 4 months. PSA went down then started to increase once more. In April 2023 my oncologist ordered Enzalutamide this was in addition to my Eliguard my energy level tanked so they reduced the dose to 3 tbs per day then reduced it further after 3 months down to 2 tabs 3 times a week and 3 tabs 4 times a week some of my energy returned until Christmas of 2023.

Now I'm experiencing some dizzy spells, occasional loss of breath, extreme malaise and loss of appetite. I now want to discontinue taking enzalutamide. My PSA went down from 5.2 to 0.4 so the treatment is working it is just that the side effects are severely affecting my quality of life.

Some of the medications available may not be suitable to take due to heart disease but, I would welcome any advice that could be given.

[tango65]

Request changing to darolutamide or abiraterone.

[RCOG2000]

i had very good response with one per day. In a private message snother fellow ln our community posted he had good response with one tab per week

[Desrochers in reply to RCOG2000]

thank you

[Kaliber]

Hi D .. I might be the poster child for bad Enza aside effects, I have everything you mentioned and so much more. I’ve even lost my mobility to the point that I live in a wheelchair, bed or couch …full time ( for over 5 years now ). Still Enza rescued me from the doors of inpatient hospice / nearly immediate death …. and I remain very grateful for this opportunity for additional length of life. It’s been miraculous….all of my oncologist have said so and I surely agree. In my case I’m “ very determined “ to persist….. no matter what it takes. All of us croaker brothers are very different with a common issue - cause. I hope you can navigate to a spot where you can find equilibrium between negative and positive elements as well. Determination and a positive attitude helps me a lot.

Love to you brother, hang in there

❤️❤️❤️

[Desrochers]

life is harder the older we get. I sometimes sit a remember the good days when you felt healthy and fit. Loved ones that are happy to help and care for you should be treasured. Im fortunate that i have that family ( small but good) who are more than happy to help.

[Kaliber in reply to Desrochers]

Yea me to … I just wish I could walk , even semi- regularly. Not everyone here has loved ones / family caregivers. Some can only rely upon paid strangers. You are so right …Us guys with dedicated family caregivers really are so fortunate. They deserve so much recognition and praise.

❤️❤️❤️

[Apple-cake]

My husband had a similar reaction after 15 months on enzalutamide. He was extremely fatigued and depressed, felt life was not worth living. His consultant stopped the enzalutamide and five weeks later he commenced apalutamide. A year later he is a different man. He does daily walks and twice weekly resistance exercise. His PSA has remained stable and life has returned to normal. It might not have the same effect for you, but maybe worth discussing with your consultant.

[Desrochers]

i will mention this to my oncologist. I pray that is works as I am the same way and feels so awful that If it was not for my wife would consider MAIDS ( medically assisted in dying) thank you for your suggestion your an angel.