I live in Washington State with my wife and two children. I was first diagnosed in August 2010 after a DOT - required physical. Had the biopsy done and I'm a little dis-organized with my record-keeping (lol) but at least half of the cores tested positive. Anyway, had robotic laproscopic laser surgery perfomed on Sept. 27th. 2010 and had a post-surgery Gleason score changed from 9 to 10. On the surgeons advice had a 6 month hormone shot of Eligard 45 mg on November 8th. 2010. Forgot to mention - my pre-surgery PSA; was 5.6 and 0.28 right before starting 39 radiation treatments on approx. January 30th. 2011. Had to interupt the radiation treatments for several days at the end of Feb. 2011 as my sister-in-law passed away in the big earthquake in New Zealand. This was a very stressful time for my wife of course and also for me as we had lived several years in New Zealand and were a close family. Coming back home the PSA; was 0.14 at the end of the radiation treatments. (These were external beam radiation treatments.) I refused to take another Eligard hormone shot as I was tired of the hot flashes etc. The PSA; went down further to a low of 0.05 and slowly started climbing. I was referred to an oncologist in June of 2013 with a PSA; of about 3.8 and he quickly informed me the surgery was a failure and the radiation treatments were a failure and hormone therapy would probably work for a little while but then that would fail too. He then wanted me to join a clinical trial for testing anti-inflammatory drugs on killing cancer cells and I might get the placebo etc. I went to get a 2nd. opinion from a very-well known oncologist, Dr. Stephen Anthony here in Spokane WAsh. and the experience was the difference between night and day! He is a hematologist/ oncologist who spent time in Scottsdale, Arizona at the Translational Genomics Research Institute as senior investigator and director of the clinical unit. He had a ct scan done and there was found skelatal lesions of T 12 in my back and a tiny suspicious spot in the bone in the right upper sacrum. He put me on Casodex for two weeks and then a 3-month Lupron shot. I have typical effects of hot flashes etc. and have been lucky enough to work full-time in my job as a local delivery driver. I have no pain from any bone metastasis. My PSA; is checked monthly and it went down for a while and was at 0.9 in February 2014 and climbed to 3.7 in the middle of April 2014. Then the middle of May it was 8.0. ( I take the Lupron shot every 3 months.) On May 31st. 2014 I began 1000 mg of Zytiga daily together with 10 mg of prednisone and will see what happens. main side effects of the Zytiga are tiredness and burning sensation when urinating. I have been encouraged to start the Xgeva injections for bone-strengthening but am very suspicious of that stuff and have seen and heard that there is alot more than 2 or 3% of patients getting the dreaded osteonecrosis of the jaw that can be a real bugger to get rid of! I take lots of calcium and vitamin D for the bones. I will update in a few days when I have my next appointment. I have told many people about this site and appreciate all the hard work that has gone into it.
I wanted to provide a little more info. after reading several of the stories of others on this site. Today I had my 1st. doctor visit after beginning Zytiga on May 31,2014. In just 2 and1/2 weeks, my PSA; dropped to 4.0 from 8.0. The doc. was elated and so was I of course. He also gave me another 3- month shot of Lupron and I wondered why since it failed after 9 months. He told me this was standard treatment as a recent study showed continuing Lupron while taking the Zytiga proved more effective. He also said the Lupron failed more quickly with me because of the high grade of cancer I have with the Gleason 10. This reminds me: I chose the Da Vinci robotic surgery because the surgeon told me he was confident the cancer was confined to the gland itself and he would get it all. Well it turns out there was positive margins with seminal vesicles with cancer but no lymph node involvement. Then he told me it looked very bad and that's when I decided on the 39 "salvage radiation treatments" (EBRT) At the same time I was on a 6 month shot of Eligard, upon the advice of the surgeon who had brought up my case at a meeting of urologists- and I do appreciate this from him. When I began the Lupron therapy 9 months ago, the oncologist first put me on 2 weeks of casodex and then this was stopped. I will update again in 4 weeks. I really feel for some of you after all you are going through... lets all try to stay positive... back in 4 weeks.
Well I got my PSA; results today and I went from 4.0 to 1.6 after continuing with the Zytiga and prednisone. I am pleased it would drop this far again in 3 weeks. I will see the doctor this Friday and will post anything that might be interesting. So far its just continuing the Lupron and Zytiga. I forgot to mention in the previous post that my surgery in 2010 was the nerve-sparing one and and for a while - with the help of Cialis- I could perform. With my testosterone near 0.1 and of course on the Lupron and Zytiga I have no interest at all now. In the beginning this made me depressed but somehow now it doesn't seem a priority. I also have my faith in God and a supportive family and this is immeasurable. Anyhow, will post more later...
Just been to the doctor and this is the latest: The PSA; is now 0.9 so pleased with this result. The annual ct scan and bone scan showed entire cancer involvement of the T 12 vertabal body compared to 1/2 of it one year ago and also a new T 11 metastasis and a small lesion in the neck area. Got talked into beginning Xgeva injections this week, despite my reservations. Will carry on with the Lupron injections as well. The lesion on the right inferior pubic ramus has appeared to be slightly smaller. Continuing 1000 mg. of Zytiga along with the 10 mg prednisone daily. I have pain in my back but not too severe. I will update again soon... my regards to Terry's family - what an inspiring man and not enough thanks can go out for all he did for so many.
Latest news after just seeing the doctor : have been continuing with Zytiga and Prednisone since August and the PSA; went from 0.7 in Sept. to 1.0 in Nov. to 1.8 in December. Also have continued with the Lupron shot every 3 months and Xgeva monthly. Now the doctor wants to switch to Xtandi and should start that in January after insurance approval. Have really appreciated my doctor arranging co-pays of only $25.00 per month for the Xgeva (and also no teeth falling out yet!) and $10.00 co-pays monthly for the Zytiga. Happy New Year to everyone and a spirit of hope for all of us as we go through our struggles! My back pains seem to have gone away, for this I am grateful. I am apprehensive about starting the Xtandi but will give it a try.
The Xtandi I was on worked for 2 and 1/2 months and was discontinued. My doctor moved away and I was referred to another that I am very pleased with. He wanted updated ct and bone scans and these were completed in May. The bone metastasis' in my back and pelvis seems to have stabilized but there are new nodules below my stomach and a "subtle infiltration of the greater omentum"- down in the same area. My PSA; went from 9.42 to 34.5 in 5 weeks and yesterday I had my 1st. infusion of chemo. (taxotere). I am also continuing with 3-month shots of Lupron and monthly Xgeva shots. All my fear of Xgeva seems to have been un-founded and could have halted the bone metastasis for now. The tumors below my stomach put lots of pain up my lower back and across my abdomen and had to switch up to hydrocodone. I will have to see how the chemo. works. My testosterone was undetectable for a few months and now is at 10. Along with the taxotere I will take 5 mg. of prednisone twice a day. I was disappointed the Zytiga and then the Xtandi only worked for a short amount of time but will have to see how the chemo. does! Still alive after a grim report from the urologist back in 2010 so can't complain!
Hello, this is not Brian but his son William. I knew my dad had been on a few pages like this and I finally came across this one.
I thought I would at least send an update not that it needs to be posted, but Brian (my dad) succumbed to his cancer on October 26th, 2015 while in the care of a hospice house. His strength had severely decreased and his body was deteriorating along with not having an appetite. His mental health stayed strong and he fought until the end but his body was not able to hold on any longer. Seeing stories from other definitely gave him hope and a drive to fight but in the end it was not enough.