THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
Well the experience was:
I was in kinda shock, couldn't believe I never smoked, drank or abused drugs, but my urologist told me I had extremely aggressive prostate cancer, he told me to verify we do a biopsy, I was scared but figured well they can stop it if they found it early, came back nine out of twelve cores were positive. The wait for the results were nerve wrecking, I felt so alone, even though I had my loved one by my side asking myself what did I do wrong? I exercised, ate good, indulged a bit in my sweets LOL but there it was...
It only got worse as the tests went on MRI, scans, blood tests, x-rays, turns out there was an activity on my fifth rib... the doctors insisted I had broke a rib when I was younger I hurt it or bruised... sorry never... it was after all the tests a lesion I have two tumors whatever they said... it was that the cancer had spread to my bone.
So the doctors at Sloan have me on Lupron. Why so many side affects that I have read? Well I believe its working surely but slowly. I feel the hot flashes more and more along with the ED, or I ask myself is the ED the fear of not having the intimacy, the depression and thoughts always cross my mind, I wonder if I am going to get through as long as I would wish, but with the diabetes and possible complications who knows, I have changed my diet for the better, plenty of vegetables and the usual whole grains. the doctors said quality of life is what they would like to sustain for me but hopefully I will last a long time.
HI, I'm still around trying to do everything I used to do,.. Jesus its hard to get up and go, knowing all the issues, just trying to recuperate after a Radical Prostatectomy. It had also metastasized to my rib very rare they say; well hows about 46 yrs old is rare to get this well there comes the ED. So then the doc try Viagra nope doesn't work. The nerves were cut, half of them to get to the prostate (the nerves wrapped around the tumor, had to be cut) yep that sucks so I get the privilege to use a nice needle. Yea guys I have to stick my private with a Needle right on it to have the blood surge to get erect until it comes back to life. That kinda takes away part of your life. The love life, but it doesn't hurt that much it's not bad. Well my acid phosphate is back up to 1.4ng. Funny I had my Radical and then they gave me a break for three months so I can jump right into Radiation everyday in the prostate area because the levels were still up after surgery, so the hormone therapy continues. For the Lesion on my fifth rib they decided to give me a ten times the strength of radiation but pinpointed at the lesion. It worked the lesion is gone. Well I guess into my bloodstream. Well I stopped the hormone therapy in November of 2013 and now April 2014 its the acid phosphotase back up to 1.4ng. In November 2013 it was 0.9, so its going up three points I figure every three months. So I wonder what to expect. Sorry for the rambling and carry on sentences. Well the going to the gym well let me tell you what a struggle LOL ten lbs was heavy lol well still trying.
Well I am still here as of May 8, 2015, I have had a recurrence. My PSA went up after about 1 year from 0.05 and my phosphate acid has gone from 0.09 to 8.7 in less than a year. It never went away even though I had a RP and then radiation, my lesion on my rib was radiated and it was gone, but now it seems I have to go find out how much and where it has spread to. As far as the ED, still there still use the needle Trimix and at least the testosterone is up. I guess that is what made it come back. I have not had treatment for about a year I don't know what's next. I am only 47 years old. I feel strong have a little incontinence and got my weight up from 170 when I was sick to 220, guess I am glad I packed on some weight for the fight ahead sucks. They say it's worse if it comes back before three years imagine this one year. I even left my job as an elevator constructor this past December because of back pain and shoulder pain and tried to apply to social security disability but got denied about two weeks ago because I was in remission and it was stable, so here I am. I wish I would have tested a week before they denied me. Now I am in full recurrence now I have to wait for an appeal so much for a compassionate act, stage 4 with metastasis, diabetic, ankylosing spondylitis, carpal tunnel, and they say I can work a lesser job (thanks government). Tomorrow I go in to find out my options.
As of May 8, 2015 acid phosphatase is 8.7 ... PSA is 4.67 ... as of June 2, 2015 acid phosphatase is 8.5 ... PSA is 5.54
I have since developed within one month of denial from Social Security Disability a recurrence to my abdominal area and pelvic nodes. Marked increase in left para-aortic lymphadenopathy measuring 3.6 x 2.2 cm. Previously 1.0 x 0.9 cm. New 1.9 x 1.1 cm retrocaval lymph node. New 0.6 x 0.6 cm left para-aortic lymph node. New right external iliac lymphadenopathy measuring 1.9 x 1.8 cm.
But I guess that's not enough for disability they want us on a death bed. I thought we paid into our Social Security our money. Who thought you had to save about two years pay if you needed to retire early? The doctor states the shooting pains and fatigue are mostly unrelated to my issues from recurrence. It's something else. OK doc, let's not blame the treatment. Well they want me on Casodex then Lupron shot until forever.
Presently my Lupron shots have stopped working 2 months ago and they want me on Xtandi as well as Lupron, will try it tomorrow. Two new tumors on spine and a lesion on my 4th rib now, pains in my back are getting worse and also several tissue pains throughout my body, leg, chest, arm, weird but tolerable, sometimes I feel depressed but stay lively. I stopped working December 2014 too much pain popping up shoulders back so now decided to have time for myself.
Danny's e-mail address is: swiftneed7 AT gmail.com (replace "AT" with "@")
NOTE: Danny has not updated his story for more than 15 months, so you may not receive any response from him.
