Back in 2009, my PSA went to 4.3, my local urologist feeling my prostate, felt all was normal, I did not think so, but in WRITING to me, he said to watch and wait for another 6 months. Not good enough for me so I demanded a biopsy, sure it came out with a Gleason 10!! His reaction was: "Ho well you have 1 maybe 2 years to live!!" They should revoke his licence.
I immediately went to Johns Hopkins in Baltimore, and there I had immediately Radical Prostatectomy. Operation went well but bad luck would have it that just that small portion of the prostate with cancer touched a lymph node stuck between the prostate and my bladder. My surgeon said: "Never seen one like it!!"
And that was the beginning of my fight for survival. At the beginning PSA was 0.0 but 4 months later 0.2. so I went for 42 day of max. radiation, after 4 months PSA up to 7.9. That little lymph node really picked up some cancer cells, how lucky can you get!!
Now after 3 years in the hands of a super oncologist, I went through everything: from hormone therapy to chemo (dont do it), to going to a hospital in Mexico for hyperthermia therapy (HIFU) to dendridic cells vaccines, cost me $25,000. Well now I have bone metastis, so now on Zometa, Lupron shots my PSA went to 256!!
Started a month ago on Abiraterone, PSA down to 150, good, if does not goes lower I will trial fo MDV-3100. But a new drug on trial is XL-184, it has UNPRECEDENTED results with bone metastis!!
Still feeling great and fighting, Charles Tosi.
Hi, update as of July 2012, still on Abiraterone, PSA going down slowly, but continuing problem is bone mets. so many have it!! and XL-184 is still on trials, this is a sure cure, I have seen CT scans before and after, from patients who got it instead of placibo, GREAT reduction in bone mets. Can the FDA get a fast move on it!! Charles
After 5 months on Abiraterone (Zytiga) my PSA is up to 350. So just started the recently approved MDV-3100 ( Xtandi). Would be interested to know if anyone else has tried this and if so what the outcome was.
I keep up the fight by working hard on my little farm on the Chesapeake bay here in Virginia, made over 100 gallons of good merlot and plan to drink it in honor of good old Alan Charlton. I was sorry to hear about him. We talked for the last 3 years since his claim to survival was a bottle of Jacobs Creek Merlot every day. His son was to become a priest,and he prayed for all of us. I'll bet he already found some heavenly Merlot. I hope he saves me some when I join him,
Best Regards, Charles Tosi
Things have gone bad to worse, here in the US, I have tried ALL protocols available and approved by FDA !! Even went to Mexico for Hyperthermia treatments, paid $30,000 for treatments, worked with my oncologist approval, etc. the latest like Alpharadin at $100,000 a month pills, all has failed!!!
A complete CT scan shows a complete bone metastasis! One night after recovery to hospital with horrible bone pains, I have been passed on to home hospice??!!
All this after Abiraterone and Xtandy failed after 3 months?? Still there are injections of Ipilimumab effective with Gleason 10 for bone mets??
Help someone, is the GL. 10, T4 the killer of no hope???
Charles Tosi
[Sadly, we were informed that Charles passed away on Friday, April 12, 2013.]
