Teddyb2

[Teddyb2]

Does anyone have any experience of abiraterone or enzalutamide?

[ctarleton]

Yes, many. Anything in particular you might like to ask, related to your own situation, treatment history, pending decisions or concerns?

[Teddyb2 in reply to ctarleton]

Thank you. My partner had a prostatectomy nearly 2 years ago. He has been on hormone therapy ever since but that is now becoming ineffective. He has been offered either abiraterone or enzalutamide. He is anxious to maintain his quality of life rather than prolong it and is worried about the side effects of the drugs. At the moment he is still extremely fit for his age, and is considering rejecting both. We would appreciate any thoughts from anyone who has experienced either drug. Thank you

[ctarleton in reply to Teddyb2]

I think a man with a history of high fitness and continued exercise discipline will do better than average on these drugs than others might. The drugs can keep advanced disease in check, and help delay/prevent more serious adverse events or painful symptoms due to "mets" and their complications.

I remember when I was pretty fit back in my 20s-40s. I could run for miles.

I was no longer doing that when I was diagnosed Stage IV at age 65. After 5 years on Lupron and 2 on added Enzalutamide, yes, I am less physically capable than I was 6 years ago. And, yes, I have sometimes been sad, mad, or grieved those losses of my objective physical capabilities and bodily self image of who I am and what I can do, compared to who I was. But, I think I have also relearned ways to ask for help, find workarounds for really difficult physical things, etc., freeing up some physical / emotional energy for other important things for my Living as meaningfully as possible in the Present Moment, instead of stressing so much as I used to do over a future that does not yet exist, and is largely unknowable and is undeserving of so much anxiety now.

Just some thoughts,

Charles

[Teddyb2 in reply to ctarleton]

Thank you for your helpful reply. Best wishes.

[j-o-h-n in reply to ctarleton]

🌟🌟🌟

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 02/21/2019 6:36 PM EST

[Tall_Allen]

Try putting "Zytiga" and "Xtandi" in the search bar

[Teddyb2 in reply to Tall_Allen]

Thanks

[NPfisherman]

I take Zytiga with prednisone and Lupron...the only SE that I have is the dreaded "hot flashes"...otherwise...not bad.... Does he have metastases and where??

Take care,

Fish

[Teddyb2]

Thank you for replying. He has metastases in the pelvic bone, bladder area and lymph nodes.

[NPfisherman]

My MO put me on Zytiga for bone metastasis--1 lesion and after getting on Zytiga, prednisone, and Lupron with my PSA undetectable or nearly so (didn't test before having radiation), I had stereotactic radiation at UPMC to remove my only tumor found on an axumin scan when my PSA was 3...It is not considered a cure but my hope is to push the cancer back and buy me time....Here is info on stereotactic radiation trials--page 4

cancer.gov/about-cancer/tre...

If you qualify, it will be free vs $80,000....I was lucky, my insurance, Cigna covered it after an appeal by my RO...

and here is some of the results by Dr Heron at UPMC in Stage 4 cancers:

sciencedaily.com/releases/2...

I had Dr Olson at UPMC initially, but his wife had a baby....LOL...and had Dr. Burton do my treatments...I have f/u next month...whatever you and your partner decide...

All the best,

Fish

[HB1966]

Hi,

I was 25 month on Zytiga (abiraterone) without any side-effects. Only at the beginning my blood pressure was a little bit to high.

[Teddyb2]

Thank you, that’s very helpful.

[Teddyb2]

Thank you, that’s very helpful.

[bellyhappy]

I have been on Zytiga for two months. The PSA had come down from double-digit to single-digit. Side effects like hot flashes and fatigue. Managing the side effects relatively well. Blood pressure is going up slightly higher than I like. Continue to do my daily exercises like walking, some weight and swimming just to keep my fitness. Good luck and God bless

[mcp1941]

I was on Z + P for nine months and the only side effects were the same as with Lupron only a bit more intense. After the fifth month the hot flashes started to diminish in intensity and eventually there was no more sweating just getting a little hot from the neck up.

[Survivor1965]

2 years on Xtandi and on/off Lipton for 6 years. The side effects are no fun but holding back my stage IV Gleason 9 disease with an undetectable PSA and nothing lighting up on the scans. For me Xtandi has been a miracle drug that allowed me to meet my first grandchild, a granddaughter, late last year. I never thought I would make it.

[Teddyb2 in reply to Survivor1965]

Thank you, that’s great news.

[Hidden in reply to Survivor1965]

That puts a good perspective on it. Special moments like that make some strong discomfort from SE's worth it.

[Magnus1964]

I have been on both. Other than night sweats in the beginning I experienced no other side effects. I might include gas with xtandi but that may be caused by the Eli Lilly mystery drug. I am in a drug trial.

[GoEZ]

I started Zytiga-Prednisone in June of 2019. These drugs have very few side effects for me. My energy levels are up, No pain, and mind fog is to a minimum. I’ve lost over 21 lbs. since Nov. The two drugs before that were a nightmare (Bicalutamide, Enzalutamide). My whole goal is to buy time (as mentioned above). Research on PC is getting closer to moving PC from a fatal disease to a chronic disease and finally (soon hopefully) to a cure. We just have to be alive for that to happen. No matter what you do live well. Good luck.

[Teddyb2 in reply to GoEZ]

That’s really helpful, thank you.