THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.
Diagnosis hit me like a ton of bricks. No clue this was coming. Amazingly healthy all my life. Parents lived into their 90's and I had never been sick....ever except for a little flu here and there.
Cancer was spread to the seminal vessicles. Initial treatment 14 months on Lupron/Casodex and external beam radiation.
Had a bit of time as PSA; went to zero.....came back in about 1 1/2 yrs.....back on lupron/casodex/proscar and included some celebrex, shots of leukine and a few others. Still doing intermittent therapy until about 6 years in when went on lupron for life basically and tried a lot of drugs to work with the lupron....nilandron, ketoconozale, DES, and a bunch I can't even remember....then did a 9 month stretch on decadron (hideous steroid) and kept PSA; down around 40 or so.....and finally early this year 2013 got in clinical trial and did provenge and now aberaterone.....PSA was around 100 and change when started the provenge...now 4 months later and after 3 weeks on aberaterone it's at 111....
Fatigue has always been the worst and finally the side affects doc at UCSF got me ritalin and adderal...which has helped a lot....have been able to take some fabulous trips both by air and by Harley Davidson......been able to retire and now spend a few months in our South Beach condo....life is pretty gjood and I want more, of course......
Waiting now for hip replacement surgery and swimming every day.....weight is about 40# over what it was in 2001 and my body is pretty soft and a mess from all the lupron years.....not body hair...shrunken penis...etc....and from the steroids....now on aberaterone and prednisone.....til october then we'll see....never had any actual cancer affects....just a million side effects from the drugs.....
Ok after the aberaterone was evidently doing nothing I stopped everything including the lupron and the prednisone and just took my adderal 20mg er for energy and wellbutrin for the depression and flomax. The fatige again horrible and could plan only one or two things in my day spending a lot of time in bed.
Even though they wanted me to continue on lupron I couldn't see any value in it as my cancer was not affected by testosterone blocking any more and I hated what the lupron did to me. The doc recommended I do chemo along with prednisone and lupron and I said I'd rather commit suicide than submit to the side effects again.....i am extremely sensitive to the drugs and know that the chemo will probably totally wipe me out.....I get nausea from the xofigo and almost nobody does. Also recently found out that my shortness of breath and dizziness was all caused by the flomax so staying off that now....instantly started feeling better and most doctors have no idea that it causes the shortness of breath and dizziness.
After a couple months of clean out I started Xofigo - a monthly shot of ion radiation that's to help bone pain. I will get my last of 6 xofigo shots tomorrow. Initially the xofigo made me feel better and kept any bone pain away but after a few treatments I started getting extreme fatigue and flu like symptoms. My PSA is through the roof at 1637 last week but after the initial xofigo flu stage I'm feeling good again and able to walk the dog and drive and hang out and enjoy my morning meditations and lunch with friends and time with my wife. so it would appear that I'm rounding 3rd base now and each step of the way I find acceptance and gratitude and am putting my financial affairs in order so my wife will be alright. I am blessed and grateful to still be alive and to enjoy the good days when they show up.
Hollis's e-mail address is: holliskline AT yahoo.com (replace "AT" with "@")
NOTE: Hollis has not updated his story for more than 15 months, so you may not receive any response from him.
