New to Forum - Initial PSA was 5,006 in Nov 2013

Thanks Pratoman. Yes, I can attest to the jaw drops I've seen on some men's faces in Support Groups I've attended during the past 3 1/2 years, as they are genuinely agonizing over their newly diagnosed prostate cancers, their PSAs, and their Options for initial treatment, or further active surveillance --- and they put it into the perspective of seeing a smiling 68 year old guy standing in front of them who's still walking around after having a PSA of 5,006 at original diagnosis in Nov 2013. Gratitude and Hope are very good things.
Charles

Hi Fairwind, Thanks. Methinks you like the "details". Ha. Ha.

I first went to the hospital in excruciating pain from a bone met at L4 and also from a lymph node the size of a golf ball in the left iliac chain. I had had some back pains in the months prior, but no significant prior prostate-type symptoms, nor contacts with a Urologist. I went on morphine while they did more tests. After my scans showed obvious bone lesions and numerous enlarged lymph nodes, they did a CT directed biopsy of that large lymph node with the longest needle I'd ever seen (through the ilium and while I was awake). It was invaded with metastatic prostate cancer, Gleason 4+4 = 8. My original prostate remains intact, and of an approximate normal size, and never biopsied. I went straight to the care of medical oncology, and other specialists, thereafter. No surgeries. No radiations.

I've been on ADT for 3 1/2 years. My hot flashes are just part of everyday life for me now. Livable.

In August 2016 I also had a Ga68 PSMA PET/MRI at UCSF as my resistant PSA was climbing up through the 60s toward the 90s. At that time about 10 "hot spots" lighted up. Mostly hips, sacrum, spine, a couple of ribs, and two small spots in original prostate. After some Provenge in Oct 2016, I want onto Xtandi in Dec 2016 with a PSA of 95. Most recent PSA was 3.4.

Charles

What we have here is a new Poster Boy.

Congratulations CuriousCharles, you are going to be a hero on this forum. Correction, I think you already are a hero. Your story will bring so much hope to many of us battling along with a far less dire diagnosis.

At last Todd will have someone to help share the load!

Chas

Welcome to HW.

Good to meet you,
Andrew

I am one of the recently diagnosed (and operated on) that freaked out when I found I had cancer. Stories like yours and others on this forum quickly put my situation in perspective. I count myself extremely lucky and can only admire the fortitude and attitude of those like yourself. I'm rooting hard for you to keep knocking it back. Very glad you have joined this forum.

Charles,

Welcome. I'm a big fan of support groups too. I go to two regularly.

It's good to see the great response you've had to hormone therapy and Xtandi - but why no Taxotere? I guess CHAARTED wasn't available when you were first diagnosed. Still, at 1 1/2 years of extended survival with relief from bone met symptoms, there is no therapy we have that extends survival as much if used early enough and none that improves quality of life as much afterwards. Xofigo works equally well before or after docetaxel. Also - as long as you're taking Zometa, STAMPEDE found that the combination with Celebrex extended survival by 20%.

There are lots of clinical trials worth looking into too. Have you talked to a medical oncologist at UCSF?

Welcome Charlie-
I'm in awe of your story. Sharing same with those in this forum can be a real inspiration. I wish you continued success in managing the disease.

Tall Allen,

I was offered a Clinical Trial in the Spring of 2016 at OHSU involving Ipilimumab (Yervoy), but declined, in part, due to the longer distance from where I live, and wanting to see what UCSF had to say, first. At UCSF I later obtained Provenge as a next treatment since I was still pretty asymptomatic, and was also offered a Provenge-followed-by-Ipilimumab Clinical Trial. After some consideration, I declined the Ipilimumab Trial, due to my concerns about the potential side effects of the CTLA-4 inhibitor, and what can happen when it "releases the hounds" of the body's killer T cells, hopefully against the cancer cells, but, all too often, also against various parts of the body, with significant side effects often requiring some rescue interventions. (I was also having some intermittent episodes of Atrial Fibrillation with Rapid Ventricular Response at the time, and some disorientation due to macular degeneration in one eye, which was, and is still, being treated with injections of Avastin (bevacizumab) into that eyeball.)

(In hindsight, I'm just as glad I did decline the "Ipi" Trial at that time. Shortly thereafter, the results of a Phase III Trial of "Ipi" vs. Placebo showed no benefit for Overall Survival (OS), and 9 men died in the Trial in the "Ipi' arm due to treatment related Adverse Effects of the "Ipi".)

Reference: http://ascopubs.org/doi/abs/10.1200/jco.2016.69.1584

Charles

Welcome to the group Charles.

Your story is an inspiration and offers hope to anyone with advanced PCa. I am one of those guys whose jaws dropped when I heard your PSA of 5006. One of the most difficult things for me was the feeling of being alone after first being diagnosed. Having others that have a similar diagnosis and have "been there" really helps like nothing else can. I'm glad you are here.

Charles!

Hope you are doing well, you are an inspiration for all of us dealing with this diseases, either ourselves's or our beloved ones.
Have you ever been under prostatectomy?