Pratoman said...
For anyone who has been on Firmagon, can you talk about how tough the side effects were?
I spoke to someone last night who scared the heck out of me. Husband , On Firmagon for 6 months, was confused, depressed, he would be driving on a road that he had been driving for 10 years, and had to stop, didnt know where he was. Very laid back guy, but on Firmagon he was always yelling and screaming at people. Also had his last shot 8 months ago and still T is not back.
Is all this typical and to be expected? I worry about being able to work (investment business so i need my brain). And i worry about how my family will be affected.
Prato,
Maybe I'm some kind of freak of nature, but I have been on Firmagon now for 4 months with virtually no side effects - no hot flashes, no fatigue, no weight gain. Maybe it will all turn bad in the future. But thus far I have had virtually no testosterone for 3 1/2 months and I can't say I feel any different than before.
As for the shots, the first one is the worst because it is a triple dose administered as two shots. The shots themselves are nearly painless but by the next morning you will feel pretty sore for two to three days. I described the aftermath of the first shots (the triple dose) it to my wife as feeling like I came in second best in a knife fight. But after that it gets much better. A single shot on alternate sides of your belly each month and the injection site pain on the following days is much less than the first shot. I had a shot on the left side last Thursday. Little to no pain by Sunday. Today (Monday) if I probe the injection site I can feel an oval lump maybe about
1 inch across. When I probe the site of last month's shot on the right side I can find a small lump, but I really have to try to find it.
Mentally - focus, concentration - I think I'm ok. Am reading Barbara Tuchman's "Stillwell and the American Experience in China" and read Sunday NY Times yesterday. So far I haven't had to regress to Fun with Dick and Jane.
I'm in the control group of a clinical trial so I got the big package from Dana Farber with all the potential risks and benefits on my research consent form - even though I'm getting standard treatment. FWIW the consent form says under "Risks Associated with Degerelix" (Firmagon):
--Frequent (greater or equal to 20% chance) - Redness, pain, swelling at the site of injection (Yes); Hot flashes (none so far)
--Very Common (less than 20% chance this will happen) - Weight increase (none so far), abnormally high levels of liver enzymes (maybe - my ALT and AST are up a bit but still within normal range) that can caused fatigue and jaundice (not for me so far).
--Common (less than 10% chance - a pile of stuff -- Joint aches (no more than goes with being 72 years old and doing fairly heavy maintenance and brush clearing work most weeks), back pain (nope), Chills (maybe a few times in passing - not sure), High blood pressure (no), decreased bone density (too soon to tell), constipation (maybe a bit), Fever (nope), night sweats (nope), nausea (nope), dizziness (nope), headaches (nope), difficulty sleeping or falling asleep (that is pretty much my normal state), Urinary tract infection (nope), inability to have an errection (that problem dates back to my surgery 16 years ago), excessive sweting (not that I can tell - though I soaked through my shirt the other day wrestling a 400 pound brush cutter in 90 + degress and 76 degree dew point - so that's what any normal person would do), decreased testicular size (not yet), diarrhea (nope).
So maybe I'm seriously abnormal, but unless they are jiving about
the probabilites of the side effects maybe I'm not. Based on my experience I'd say worry about
the possible SEs was way worse than anything I've actually experienced.
Hope this helps.
Jim