I recently tried to enroll in a clinical trial at U. of M. (XL184 drug) and the hospital is reknown and has a decent reputation. Looks like I might qualify for the trial and you are guaranteed to get the drug (no placebo group). Well after initial meeting, was given 3 month Lupron shot so as to verify hrpca such that this drug was proven not working, even though I failed on it with a one month version very recently, they needed their verification. Anyway, told to wait 30 days and get a new psa test to verify this and that was a key point for me qualifying, apparently. Maybe they knew I wasn't going to be a candidate and liked cashing in on the 3 month shot, because see what follows in the next paragraph, herein.
Well I tried contacting them 3 times recently, 2 via phone (w/voicemail message left) and once with an email. Here is da' love.....many days later now and zero response and no email or returned calls. Why not send an email saying something, like blank happens, good luck buddy. So, right now I am frustrated that a simple return which would be a caring and basic act is not even forth coming. Not a good advertisement for PR with PCa patients. I still don't know what that original psa test was from that initial meeting day, and I asked for it via email and never replied to that, but did reply weeks ago to my email question I had then on something else.
I am awaiting my recent psa results with my local onco-doc whom I have been with for almost 9 yrs. now, and he has not returned my phone call (yet) and it has been a few days, now. Normally he is pretty darn good at returning calls and follow up, I will give him a pass at the moment. I am this twilight zone juncture where I have to switch to one of the newer expense drugs or trials, as everything else is not working and I tried various other protocols already. I can comprehend why some guys throw in the towel and give up (Merle P. was one guy whom decided he had enough of the jumping through hoops and drugs and quit and lived almost 2 yrs. thereafter).
Such a joy for patients to fight to get drugs, fight to get options in drugs, maybe fight insurance companies and fight to get replies or some type of reasonable care, concern and stuff you can read in the hypocratic oath. So, I can say I am witnessing some things that are way below my expectations and don't be surprised is this type of junk happens in your scenario. We have seen others herein of the forum with some very reasonable rants and frustrations.
I recently tried acupuncture because I have some nasty back pains and have some PCa happening L4-L5 but off to the side in nerve areas (per MRI), might have this radiated in the near future. The acupunture for $75 session, was useful and unique (1st time for me) it was not a complete cure and not sure how long it may last if anytime at all. But it did diminish the pain levels and helped me have more movement with less pain and after dealing with this pain for a few weeks, that fee is cheap.
I recently heard that compounding drugs is now considered illegal and not happening, so DES which is man made compounded drug may not be available anymore???? If so, that is because of not wanting competition (via the system), no patents and DES as low as $130 per year. It worked well for me over 8+ yrs. and trumped ADT3 big time and that cost around $13,000 a year (2002-2004). I had good psa control for 10 yrs., and now into 11th year it is far from good control, so monitor your psa levels and especially watch out for any doubling times, once into this arena switching drugs for control would be essential, but over time usually futile as nothing is curative and some studies suggest makes about no difference in survivorship. Other considerations include quality of life and pain management options (radiations, radio-radio pharma drugs, vaccines, etc.) Ok, back to your regular scheduled forum discussion now. (-:}