My history Pca

[stdcdabci]

Hello all: This site looks great and thx to all who created it and contribute.

I was diagnosed in the spring of 2013 with contained Pca, + biopsy Gleason (3+4), adenocarcinoma, PSA 24, age at DX 60, and the urologist following the biopsy urged an immediate prostatectomy. I declined and decided to seek other opinions. I have also used alternative methods including Gerson therapy, homeopathic treatment at a clinic in Mexico, as well as standard androgen therapy. The lupron shot and bicaludamine RX I did in 2014/5 brought my PSA down to .01. After 2 years my PSA began to climb. In April, 2015 I opted for radiation therapy as the PSA was back up in the low 20,s. All was well with normal PSAs following being under 1. Then 2 years post radiation the PSA began to climb. Here I am in 2018 I’m with a PSA of 225 today. The last 12 months it rose significantly from 28, to 87 to 225. I’m a bit nervous. I just did my 3rd bone scan last week. I’ve done 2 prior, one 2013 and 2016 and both were negative. I’ve got an ND oncologist on board and urologist. After reading these posts, it looks like I’ll need a prostate MD oncologist if I’m positive on the bone scan. Wish me luck, thx all.

[ctarleton]

Good luck to you! Hope you ask your oncologist about things like Zytiga or Xtandi or other treatment options and different types of scans that may be available during your up-coming visit. A lot has happened since 2013/2015. If you let us know something about the area where you live, we might be able to help you find some candidates for doctors who specialize in prostate cancer oncology, or institutions who offer the latest in prostate cancer Clinical Trials, or perhaps even some helpful face-to-face Prostate Cancer Support Groups.

Charles

[stdcdabci in reply to ctarleton]

Charles: thx. I live in Alaska but have decided to focus my treatment here in Phoenix, where we live as well. I appreciate the references on treatment options and will study same. Definitely interested in local oncologist in PHX and any clinical trial stuff. Due to my 3 K a month insurance premiums I was paying prior, I’m a cash patient til 8/18, where I then get Medicare coverage this year age 65. Many thx & good luck to you

[Hidden]

Welcome to the group. You'll find a lot of support from your brothers in the fight against PCa. Yes, I think most of us would agree that should find a MO that specializes in prostate cancer. Are you still on primary ADT?

[stdcdabci in reply to Hidden]

Gregg57 thx for the reply. I’ve been running naked here since 2015; No ADT, nothing. By the looks of it, that option to me is front & center to lower the PSA. The concern now is the PSA elevation still contained in the Prostate or spread. Next few days I’ll know and more likely get back on ADT. Thx

[Hidden in reply to stdcdabci]

I'd guess that you'll have a good response to ADT, especially if you've gone so long and done fairly well with nothing. There are other options as well. Do consider early Docetaxel chemotherapy to kill off some of the cancer cells that are not hormone senstive. Like many others, I was initially afraid of chemotherapy, but many here have done it with good results. The side effects are very tolerable for most and it's over in 18 weeks.

You can check into the results of the STAMPEDE and CHAARTED trials which show median of approximately one year of added OS.

Here's a link to a video on the STAMPEDE website.

vimeo.com/149626704

Good luck with treatment and keep us posted.

[stdcdabci in reply to Hidden]

Gregg: thx so much for taking the time and I’ll look into this. Your very kind. Any such options in AZ?

[Hidden in reply to stdcdabci]

Don't have any experience with AZ. Are you a Vet by any chance?

[stdcdabci in reply to Hidden]

Not a vet

[Tjc1]

Looks like Xtandi or zytiga might be your next best bet especially if you have no bone mets. Chemo might be offered too. But im no doc, just passing on the info ive been taking in lately. Let us know what happens.

Thomas

[stdcdabci in reply to Tjc1]

Thomas thx. I appreciate the hormone suggestions. And if positive the ND oncologist (AZ) said something about Guardant? Must be some chemo drug. I’ll look into this. Thx a lot Stan

[vandy69 in reply to stdcdabci]

Good Monday Morning stdcdabci,

Been in this battle for almost 6 years (please see bio for complete treatment history).

Over these years I have had 4 Guardant360 liquid biopsies. It takes only 2 vials of blood and the report provides any genetic defects in your cancer. Your cancer mutates over time so I could see these genetic changes.

Test #3 identified an ATM defect so Dr. Snuffy Myers could prescribe Lynparza, a PARP inhibitor. It worked for me for about 9 months. Many of the identified genetic defects do not yet have actionable treatments.

If your Med Onc suggested it, good for him (and you). Big issue may be cost. I am on Medicare plus supplemental coverage so no out of pocket expense for me.

Best wishes. Never Give In.

Mark, Atlanta

[stdcdabci in reply to vandy69]

IMark:

I’ll pull up and read your blog history today. My background is being a chiropractor last 31 years now retired out of Alaska. Yes, I’m Medicare eligible in August this year, so I’ll have to pay out of pocket and save the expensive stuff for when I get Medicare coverage 8/18. Reading your input and others, it seems to me that this immuno assay testing approach for cancer cell mutation is new to me, and fairly new to warriors, at least my original cancer oncologist never brought this up; thx for the heads up. My stdcdabci handle is my initials followed by the DC is doc of chiropractic. I’ve been in the war since late 2012. So I’m at the 6 year point. I drug my feet first 2 years in denial while I sought out experts and 2nd, 3rd and more opinions. I must have spent 50K out of pocket doing exams, MRI’s, co pays, (first 5 K my cost yearly) and a three week clinical stay in Mexico with 2 MD, homeopathic docs in Mexico— all cash up front. And by the way, I sure ran into some greedy manipulative “ professionals”, along this path, as well as some some great docs as well. It’s been a real eye opener. Thx, all the best. Stan

[tango65]

Talk with your doctors about consulting with Dr Almeida in Phoenix to determine if you should get a PET/CT instead of the regular bone scan.

pcri.org/insights-blog/2016...

[stdcdabci in reply to tango65]

To late, did the bone scan last week. Is your referral doctor a radiologist or oncologist. Thx. Stan

[Hidden in reply to stdcdabci]

There's a good chance you'll be able to see what you need to see with the bone scan and not need a PET CT. That would save you quite a bit of money.

[stdcdabci in reply to Hidden]

Thx Gregg. I’ll let you know. Waiting fir that phone call. Take care Stan

[stdcdabci]

Charles: great points. My wife and I cross over the Medicare eligible threshold this year & next. I will consider what you sent me. As far as generalities, when I priced 45 radiation visits in AK in 2015 the IMRT fees then were 10 X’s the median cost vs. the lower 48. In a lot of respects, the market is so small in Alaska. & limited, that the more remote you tend to be, the more you can charge as a professional, and the more the insurance companies tend to allow. My treatment for these 45 visits was roughtly $300,000. Price is usually the first consideration. I will look carefully into my options. Living in AZ seems to be more economical thus far. Those dividend checks we’ve been getting yearly since 1980 from big oil in AK have been great, but lately the state has been seizing 50% of our dividends for “ emergency budget” neeeds, so that’s a small consideration to. Hah. God bless Stan

[Wdoug]

Good luck! Hope you can find something to turn it around.

[stdcdabci in reply to Wdoug]

Definitely working on that. Many thx, Stan

[j-o-h-n]

Greetings... You've come to a great place for information and comradery.

Good Luck and Good Health.

j-o-h-n Monday 03/05/2018 4:02 PM EST

[stdcdabci in reply to j-o-h-n]

Well John thx for that. I appreciate it and same to you, Stan