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Posted 3/27/2012 12:42 PM (GMT 0)
 Had my first Lupron shot yesterday - Dam that needle hurts!!

 Started Casodex last week.

 Because of my positive NaF bone scan, the length of treatment is tentative. Current tentative plan is 7 months but that will depend on 1) how fast my PSA responds to HT, and 2) What my NaF scans show at the end of seven months.

If 1 is quick (PSA undectable within 1-2 months) and 2) is clean, then MAYBE I can go off HT around Thanksgiving. If not, then I'm in for a longer sentence.

I recall a post (which I can no longer find) on a drug that prevents breast enlargement on HT patients. My oncologist said that breast enlargement only happens in 18% of the cases and that they radiate the area to prevent it. Problem is that they need to radiate BEFORE the breast glands begin to swell so that I need to be attentive to any excess tenderness in that area. Once swelling occurs, then surgery is the answer. Does anyone remember the drug I'm thinking about.  I'm not keen of feeling myself up every night and I'm am trying to keep appearances of my cancer at a minimum.

If others don't mind, I will chime in from time to time on the SEs. Reading some other posts in this area, the loss of body hair may be a plus!!!, always was a little ape-like in this area!!!

Posted 3/27/2012 1:43 PM (GMT 0)
Femara is one of them, I did ADT3 combo for 2 yrs., and got only mild/small enlargement, then got radiation to breasts and then used DES for 7-8 yrs., never got bigger than when radiated, but is never reversible on whatever you have already and even radiation is not a guarantee either. Dr. Myers says like 15% or so of patients whom do nothing for it (these are patients whom he sees whom have done many types of drugs and high risks), never get breast enlargment and they don't understand why! If you did high doseage casodex your risks increase for it to happen, on 50 mg perhaps your docs percentage number is accurate...I don't know for any fact.

Friend of mine had the surgery done to remove having large breasts, not a pretty post opt photo...drainage bags with tubes etc.  It did get him the look he wanted back, but probably good to avoid that scenario.

Post Edited (zufus) : 3/27/2012 10:42:37 AM (GMT-6)

Posted 3/27/2012 5:04 PM (GMT 0)
I'll have 12 months in come May and the only SEs that really concerned me were Hot Flushes and no sex drive.  I do exercise a fair amount and always watch what I eat, so I never had any concerens for weight gain or breast enlargement. But then again everyone's SEs are different.
Posted 3/27/2012 6:31 PM (GMT 0)
Been on it for 9 months now and I lost muscle mass and gained a little around the waist. Still have yet to have a hot flash but me feet seem like there on fire at times and have to wake up and soak them in ice cold water. But this was happening before I started HT. Not sure why.
Posted 3/27/2012 6:43 PM (GMT 0)
Casper,
Sounds like a neurological condition. Go see a neurologist to find cause.

RalphV
Posted 4/3/2012 1:02 PM (GMT 0)
Well 2 weeks into HT and so far only SE is fatigue. But it gets worse every day. I feel like I've run a marathon as my muscles are so tired. I exercise vigorously every day and each day it gets harder to go to the gym. but interestingly, after about 20 minutes of working out, I lose that feeling of exhaustion and feel like my old self again. Once I stop working out, the fatigue kicks in again.

I'm a stubborn guy so I will continue to work-out no matter how tired I feel. Hopefully my body will adjust and that SE will go away. I get my first PSA and T level check in another 2 weeks.

Currently fighting Aetna on the NaF scan, which they have now decided is experimental (even though they approved it verbally before I did it). In case anyone is curious, it costs just under $5,000. Lesson learned, get test approvals in writing from the insurance companies.... they tend to forget things when the actual bills come in!!!!!!!
Posted 4/3/2012 1:53 PM (GMT 0)

Keeping faith said...
Well 2 weeks into HT and so far only SE is fatigue. But it gets worse every day. I feel like I've run a marathon as my muscles are so tired. I exercise vigorously every day and each day it gets harder to go to the gym. but interestingly, after about 20 minutes of working out, I lose that feeling of exhaustion and feel like my old self again. Once I stop working out, the fatigue kicks in again.

I'm a stubborn guy so I will continue to work-out no matter how tired I feel. Hopefully my body will adjust and that SE will go away. I get my first PSA and T level check in another 2 weeks.

Currently fighting Aetna on the NaF scan, which they have now decided is experimental (even though they approved it verbally before I did it). In case anyone is curious, it costs just under $5,000. Lesson learned, get test approvals in writing from the insurance companies.... they tend to forget things when the actual bills come in!!!!!!!


what is Aenta ontheNaF scan?......no worry......things will work out.....there are worse things then SEs from HT!
Posted 4/3/2012 1:54 PM (GMT 0)
Hey if you are getting scammed by the scan try contacting www.paactusa.org   they have total advocacy (independently run) and a legal advocacy department and have seen such things, Rick P. will atleast talk to you for free about it. Really stinks when games are played on patients. Good luck. They also have a newsletter on line pdf files you can access for free even, nice to subscribe via donation basis. Rick won the Harry Pinchot award for PCa advocacy just recently....it is considered a big deal.
Posted 4/3/2012 2:42 PM (GMT 0)
Thanks Zufus.

My Docs at Columbia just told me that they will do the first appeal, so I am not to pay the bill yet. if that doesn't work then maybe i will take you up on your suggestion
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