Thanks for not wasting anytime posting this. When I got off the phone with you I posted the following on the PPML:
Some of you guys know me as a forum moderator at HealingWell.com. I wanted to share a story about
one of our members there:
This member came to us after a diagnoses of prostate cancer with a PSA at 3216. He was just 42 when he was diagnosed. He had mets to lung and bone. He was placed on Lupron/Casodex for 4 years and achieved an PSA nadir at 0.5. He, with his oncologists blessing, stopped all ADT and for 8 months and things went well until this last April. At that time his PSA started to rise. It was at 6 just a month ago indicating an aggressive PSADT. Some of our members, including myself, were suggesting that he look into DES. When he approached his Kaiser HMO doctor, she had never heard of DES. Our buddy learned about
DES because other members at the site that were having terrific success with DES.
My personal oncologist, Dr. Nicholas Vogelzang, will use DES for advanced cases and while he cautioned me that it does not always work for everybody, he swears by it's effectiveness in patients that respond to it. When prescribed in 1mg doses along with a blood thinner, he says this treatment is very effective in treating advanced prostate cancer with far less side effects than you could expect. I have asked Dr. V to be our guest speaker tonight and he will be talking about
Provenge, Cabazataxyl, and DES.
More on my friends case: I find it amazing that an oncologist treating an advanced case of prostate does not at least know about
a treatment regimen that has been around for much longer than any ADT therapy. The reason I post this is to point out that it is vital for a patient, especially with advanced disease, to be a student of prostate cancer and in the brotherhood of survivors ~ without bias. My friend is just now learning that he feels he has been waisting time with his current doctors and has reached out to other well known oncologist.
And his first oncologist? He just retired and has metastatic prostate cancer as well. The nurse at the institute where the HW man I am referring had been treated at is his wife and they did research last night on DES. They called our HW buddy today to thank HIM for providing information on potentially life saving or extending therapy.
Ugh. "It's a jungle out there". There is serious reason to believe that some in the oncology pool are very inexperienced with vital 2nd line hormonal therapies... I am not endorsing DES, but rather pointing out that I am so happy to know about
it and to know that my oncologists gets it. I don't have that happy ending to report on the story I am writing about
, but I may follow up with more on it soon.
Hopefully this raises some eye brows with the folks here on the PPML.
Peace to all...
Las Vegas Chapter President
I have already received several papers from one doctor in Halifax that has survived many years on Estrodial ~ Estrogel. Seems to think it's better than DES, but I am cautious to mention that DES at 1mg is safer than at it's older doses that proved to have nasty side effects. Not sure of everything yet, but I have been doing my homework. You are 100% right in terminating your current Oncologist. I think a key question in hiring a prostate cancer oncologists is what 2nd line hormonal therapies are they versed in.
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas
Blog : www.caringbridge.org/visit/tonycrispino