I took enzalutmide for 2 years. Sam and I were trying to get into the MSK trial at the time. Didn't get in the trial but got some meds anyway. I noticed that my hair was thicker and curlier when I was on it and now it is thinning and less curly but some of this is possibly related to chemo changes (chemocurls). I think I tolerated it with a reasonable amount of energy (I am 75) but took it at night and slept about an hour longer and felt a little groggy when I got up but certainly not any issues other than that. I had some decrease in sex drive which is better now. No lab abnormalities. At one point after about 18 months I thought I was getting headaches and stopped it for a couple of weeks but I think this was more related to a viral illness and when I restarted the problem did not recur.
Finished enzalutamide (Xtandi) after 2 years and have been doing well (knock on wood). Tried to review specific recommendations on this for AR+ TNBC but could not find specific recommendations still. Hopefully my old friends on this list like Sam and others are still doing ok.
Please accept my apologies for jumping in here, but the topic interested me as my daughter in law has been prescribed Spironolactone for several years for adult acne. Perhaps it would have some even limited benefit to those for whom the normally prescribed anti-androgen drugs used in cancer treatment have had too many side-effects. Spironolactone. Spironolactone is a synthetic steroidal androgen receptor blocker, which has been used for more than 30 years for the treatment of acne and hirsutism.
I'm still here and doing great! I was on bicalutamide for a little over 2 years. I ended up coming off it so I could get pregnant, which I did, and I now have a beautiful 5 month old baby girl. I didn't notice any side effects while I was on it, but after coming off it my hair got much thicker (like it was pre-chemo) and my periods became more normal. I considered going back on it after I had my baby but I spoke with Dr Traina prior to getting pregnant and she said there wasn't really any research to support being on it for longer than 2 years so I've been off that and my copper chelator (TM) for over a year now and am doing just fine!
I too am doing very well. 4 years out from Dx, 3.5 years from surgery!
sam0623 Thank you so much for sharing this! I plan to get a second opinion from Dr Traina as soon as I can get an appt. I have heard great things about MSK and Dr Traina, my MO is encouraging me to go. How was your experience at MSK? My MO feels there is a good chance that I am AR positive also, we'll see after impact testing. Congrats to you on having a beautiful baby girl, I love to hear positive stories! Best wishes.
sam0623,congratulations on having a baby girl. That's awesome to note that you have been on Anti-androgen for two years and doing great.
For those of you who were on anti-androgen therapy, did your tumor markers rise while taking it? I started Enzalutamide (Xtandi) two months ago. Today my CA 15-3 increased from 580 to 1854, CEA and CA-25 also increased but not that drastically. Is this due to anti-androgen therapy or should I be concerned that the liver mets have gone haywire? I just need to know the correlation of anti-androgen therapy to tumor markers if anyone has seen this during your time on treatment.
By the way I have extensive bone mets in the spine and liver mets that kept progressing on all chemo. My blood counts (WBC, Platelets) were dropping so my MO decided to give me a chemo break so that my bone marrow would recover.
Thank you for your support and as always this forum is a great resource of knowledge!
Congratulations on the baby! I am doing well also and welcoming another grandchild in November. I took Enzalutamide for 2 years and stopped at that point also.