On 7/9/2009
RTOG 0521 wrote:
59 years old PSA 40 /Gleason 7/ T3 May 2008
I am currently enrolled in a study RTOG 0521 at Fox Chase Cancer Center in Philadelphia. I have completed my radiation thearpy(IMRT), and currently in hormone thearpy (LUPRON). The radiation went well, but this hormone thearpy is just awful.I have been on casedex (ended) and Lupron for about a year. Tell me some of your adventures with is drug. I struggle with fatigue and forgetfulness all the time. I will be starting my second year of Lupron in August. Thoughts/help
Thanks
RTOG0521
I recently had my 3rd injection of the 6-month dose of Eligard, which will carry me out to a total of 18 months. I'm 66, was diagnosed about March of '08 as a Gleason 8, PSA of 11, which had climbed to 17 by the time I got first Eligard shot. Was also on Casodex for the first month, after which I started daily IMRT radiation treatements. The treatments were enhanced by 4 gold seed implants to allow adjustment of the beam prior to each treatment and went very well; only noticable symptom from that was diarhea that a daily Immodium took care of. PSA dropped to 1.0 after 1 month of Eligard and had dropped to <0.1 and has remained there.
The first 6 months on Eligard weren't too bad although I did notice some loss of energy. I've always been fairly active and sure don't like that. Libido drop was less than I expected, but was impotent after about a month. Fortunately Viagra cured that. By the 2nd 6 months, the hot flashes became quite noticeable. Was fortunate enough to pick up a consulting job that was mentally quite challenging, so maybe that has helped with memory issues, but many times I felt like I was in over my head! Considered stopping Eligard after 1 year, but my radiation oncologist convinced me to stay on it for another 6 months. Urologist says 24 months of hormone blockage is recommended for a Gleason 8, but I'm thinking of stopping after 18 months and just going on Casodex, which my medical oncologist said was a viable option. Have read that if you're on the hormone therapy for 2 years, that about 20-25% of guys end up being permanently "castrated", i.e. testosterone never comes back! I don't like those odds and was also concerned about loss of muscle mass, osteoporosis and increased blood pressure, so I joined a gym last fall and began doing strength training about 2-3 times/wk. The hot flashes are now much less noticable and I feel better than I have in a long time. Intent was not to build muscle but to just hang on to what little I have. Have been able to increase lower body strength quite a bit, but upper body strength hasn't changed much. I used to do a lot of bike riding, so maybe that explains why leg and back muscles are in much better shape than everything else! Have been following Dr. Charles "Snuffy" Myers recommendations for diet and vitamin supplements. Recent checkup showed the best cholesteral/HDL/LDL numbers I've ever had and bone density scan showed no osteoporosis, so that was encouraging. Will probably start doing more cardio training shortly to improve endurance to get ready for a dive trip to the Fl. Keys next month.
Hang in there and consider hitting the gym - it seemed to help me quite a bit, although I still don't have the energy I'd like to. You might enjoy reading Dr. Myers book, "Beating Prostate Cancer: Hormonal Therapy & Diet". I've read several books and it's one of the best and relatively recent (2007). His cancer diagnosis was similar to yours; he was on hormone treatement for 18 months, but he's very careful with diet and takes a lot of supplements. He's been cancer free for over 10 years. His philosophy seems to be that you need to look at the big picture - if you get too aggressive with the cancer treatment and kill it but the patient has a stroke or heart attack, you really haven't gained very much! Good Luck!
Denny