I lost for lack of a better term my passwords and such to this site and many more so as a last resort I created a new account..... My name is still Barry.... I'm 58 yrs old with metastatic prostate cancer... involvement in t-2,t-3,t-4,l-5 and right 3rd medial rib.... diagnosed in October of last year.... psa in June of 2018 was 6.54.....rose to 20.97 by September of 2018....my prostate was removed in 2013.... initial Gleason was 3+4=7 but later changed to 4+3=7 after pathology with tertiary of 5.....I had one 6 month shot of Eligard and subsequently stopped treatment prior to getting another one.... was told by oncologist I was never coming off of ADT.... He was mistaken... My health care such as it is, is through the VA, but I recently was approved for disability and medicaid and I am going outside the VA and try to find an oncologist closer to home and hopefully explore other treatment options.... that's pretty much it.... Just want to say 'Hello' community....
New user name but same old me! - Advanced Prostate...
New user name but same old me!
Welcome back, Barry.... what is your current PSA and are you adamant that you do not want ADT?? Good luck...
Don Pescado
have no idea about my psa level.... to be honest I was afraid to know for fear it would weaken my resolve... I dropped off my records at a local clinic yesterday and hopefully I can talk with an oncologist who is open to listening and I can do chemo or possibly a clinical trial..... I'm certainly not opposed to treatment... and in no way do I endorse anyone to take a path similar to the one I've chosen..... yeah I'm more than adamant about no ADT.... it's simply a non-starter for me..... and I wish you all the luck in the world.
Perhaps someone can show trial evidence that ADT of any manner supports any extension of overall survival whatsoever for metastatic PCa.
If such exists, I have been unable to find studies or trials to confirm same,,,,except anecdotally.
I am not certain that I have ever found any evidence that ADT provides any overall benefit to overall survival for PCa victims whether metastatic or not, except possibly when used as an adjunct to primary radiation therapy.
Palliative benefits for ADT are apparently well established.
I am speaking not of progression free survival, but of overall survival.
Perhaps someone can help me on this question that long has bothered me.
Looks like we're in the same timing (age 58 too), Dx October 2018, on 3 months Lupron shots with Zometa, 1000mg of daily Zytiga with 5mg Prednisone. Getting my second chemo infusion, Taxotere next week.
My vertebrae lit up: Sclerotic lesions are visualized in the T11, at T10 T8, T6 and T5 vertebral bodies. Subcentimeter nonspecific sclerotic foci are noted in both iliac (Pelvic) bones (7:64 and 58). Also. add a couple spots on the ribs and I'm all set. And yet, my PSA < 0.02 is undetectable.
The T8 is heavily covered, took a biopsy of it - was reported non-cancerous. But, my Dana-Farber doc says does not prove anything.
But the SPECT-CT scan reported:
1. Focal tracer uptake corresponding to the sclerotic lesions in the posterior right fourth rib and left sixth rib most likely represent osseous metastases.
2. Additional focal tracer avid sclerotic lesions in the left supraorbital region and T7 vertebral body may represent osseous metastases.
Interesting, T7 was added by the SPECT-CT scan, anyway like this scan the best.
Are your spine findings from osseous metastasis?
Still have my prostate, but you noted prostate removed in 2013, then got diagnosed October 2018?
yep.... as a matter of fact I was seeing a radiation oncologist and we had a plan in place until the results of an auxmin pet scan.... that bird flew out the window pretty quick.... I'm sorry to hear that you're going through this as well..... please keep us informed if you don't mind as to how effective your treatment is... I'm not religious but I'm praying for you brother!
Hi Bob,
Well, in routine exam, a result of PSA 6 got me a visit to a urologist in 2013! Biopsy was GS 6, the urologist recommended immediate RP, and tossing some dates for a surgery.
I decided for active surveillance, but in year 2016, slacked off on the active part. Then BANG!, overnight in August 2018, incontinence, blood and burning sensation when urinating. Regarding ADT, did gave it some credence, because in just a few days of taking Casodex, my symptoms disappeared!
Anyway, my previous post explains current state...
I deleted my account (NYMets), then came back recently, definitely will keep in touch with your posts, our timing is insane and who not dreams of jettisoning ADT!
Going to see my oncologist, Mark Pomerantz from Dana-Farber in a few days. One questions, what's with my PSA <0.02 and all these mets?
Prayers back to you brother...
Dark and Idont: I was on active surveillance for over 16 years, About 105 days ago I started Casodex (bicalutamide) anti-androgen monotherapy. PSA 3 weeks ago was down to 59 from 650. Improvement in alkaline phosphatase as well. Lung and bone mets shrinking. No side effects except nipple tenderness. I don't know if gynecomastia will result as well. Have refused bisphosphonates as well.
Joe M.
I was on Casodex for about a month as prep for the lupron... may inquire about it as it didn't seem to have side effects that caused me any problems
Hello Barry,
If you're looking for a new doctor, I recommend checking out the National Cancer Institute's list of "Designated Cancer Centers". These are research hospitals and clinics where success rates are better than average and the doctors keep up with, and participate in, the latest research. I don't know of any reason to believe that costs are higher at these places and they may be lower, or even free, if you join a clinical trial at one of them since costs for trials are often paid by the government or by drug companies. See: cancer.gov/research/nci-rol...
Best of luck.
Alan
Thank you Allan, I will do that.... I have done some checking and will continue to do so... best of luck to you sir
Idontwant2 either.... So Barry if you tell us where you're located maybe someone here can recommend a good doctor(s) for you to see.
youtube.com/watch?v=uesdoK4...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 08/06/2019 8:39 PM DST
Rome, Ga.... approximately 60 miles northwest of Atlanta, Ga....
Thanks for the info... Maybe ask the folks here for referrals to MD's in and around Rome... but they'll probably refer you to one in the big Peach, Atlanta...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 08/07/2019 6:14 PM DST
Welcome back Barry ..Idontwant2 either, great handle .. I’m no expert and can’t give medical advice . I do commend you for you fight . This APC is one tuff SOB ... hang in there . Hope relief and miracles come to you soon . Many prayers to you dear Sir .. Scott from Az. 🌵
Thank you.... it is a battle and a definite change of mind set
thank you Scott... and I hope the same for you as well.
Twilight zone like sometimes .. Take care
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