Who'd of thunk it?: I was diagnosed... - Advanced Prostate...

Advanced Prostate Cancer

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Who'd of thunk it?

Beermaker profile image
7 Replies

I was diagnosed with PCa in October, 2011 after a biopsy showed Gleason scores of 7, 8, and 9 in the cores. My PSA at the time was 6.2. After talking with several oncologists, I settle on a robot assisted prostatectomy. After the operation I was told the team could not get all of the cancer out. The margins were bad, the local lymph nodes, seminal vesicles, and nerves that were harvested were all full of cancer. My urological oncologist called it a "particularly aggressive type of cancer." None of this gave me much hope.

After surgery I hit a nadir of 0.19 PSA. I started on Elligard (lupron) and it dropped to undetectable. I had total ED thanks to the nerve harvest, and strong side effects (hot flashes, breast growth, severe fatigue.) After a year of undetectable, my oncologist suggested and ADT vacation, and agreed. Two PSA tests later I was up to 10.2. My hematologist oncologist (I have a form of chronic anemia) saw the numbers and freaked a bit. He ordered a CT and bone scan immediately and talked the my urological oncologist to get me back on ADT, this time Trelstar.

Fast forward to 2017. I moved to Pensacola, FL in Sept 2014 to be near family. I just (two months ago) got a new oncologist who is a specialist in PCa. After reviewing my previous scans and my 4 years of great response to Trelstar, he ordered a dexa scan for bone density. I had tested as having osteopenia in 2013 and been put on Prolia. This time, the scan showed no issues with bone density at all. I was very surprised, as was the staff.

They also ordered a CT / Pet scan with NaF (sodium fluoride). Previous scans had shown no bone issues other than arthritis, but soft tissue scans in 2011 and 2013 showed 4 lymph nodes that were enlarged and seemed to be metastatic. I was classified as M1 metastatic. This time, the soft tissue scan showed no problems at all in the lymph nodes, or with anything in the prostate bed. No signs of cancer anywhere. My new Onc still plans to keep me on ADT and to add Xtandi to my regimen. (I take lycopene and capsaicin supplements.)

So, what happened to the cancer? How do I know what happened? Should I continue on and add Xtandi? I never thought I would scan clean. I am amazed. I got no real info on that from my Onc, just a comment that the scan was really good news. I am at a loss as to where to go next with treatments.

Sorry for the long post. But who'd of thunk it, that all the PCa would seem to disappear? Color me hopeful, but very wary.

Beermaker in Pensacola

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7 Replies
Dan59 profile image
Dan59

Beer Maker , Congratulations on the great response, I am also glad to hear you found a specialist, when you find that Dr. (in the words of my 90 year old Mom who still drives, "Just do what the Doctor says". I was dxed MIBand LN in 2006, There are many therapies now, May be good to do as Dr. says and hit it with xtandi to try to kill any residual cells that may not have been seen on scans. I wish you the best.

keep us posted

Dan

Nicnatno profile image
Nicnatno

Hello Beermaker, my PSA for the past 3 months have been 0.1. I hope it stays that way forever. My Onc said I will be on lupron forever, no matter what. I haven't taken any supplements like you have, just calcium with Vitamin D. I drink 2 cups of green tea a day and eat lots of strawberries since they say they are strong antioxidants. I would add the xtandi along with the ADT since a lot of the good men here has had great results with it.

Nick

Shooter1 profile image
Shooter1 in reply to Nicnatno

My oncologist also said 'lupron forrver' I said let's go with bilateral orchidectomy instead. In my case he agreed might be a better plan... Scheduled for Feb. after full course of Taxotere is completed and wounds will heal normally again.

Just my tcw.

Doug

pjoshea13 profile image
pjoshea13

Hi Beermaker,

You mention supplements & also reversal of osteopenia. I was wondering if you also take vitamin K (in addition to the Prolia)?

You may consider doubling up on the hops in your beermaking. I live in Asheville, NC, where there seem to be more good brew pubs than good restaurants. Some very nice hoppy IPAs to be had locally. Here are the PCa studies involving hops:

ncbi.nlm.nih.gov/pubmed/?te...

-Patrick

Beermaker profile image
Beermaker in reply to pjoshea13

Thanks, Patrick. That was interesting reading. I love very hoppy beers, as does my wife, and that is basically all we consume. We don't drink a lot of it, but now I have an excuse to have just a bit more...

I do not take vitamin K. I could add it, but I don't like to over treat things. The Prolia has worked so well for me, as has the Trelstar. I will keep the K in mind should the osteopenia return. I will keep on with all the hops I can consume responsibly.

Ashville is a great place, and the addition of all the breweries there has made it even greater. I expect to get there someday and will let you know when we are on the way. I do beer / brewery tours and Asheville is one of the places they are offered.

Thanks again,

Beermaker

Beermaker profile image
Beermaker

I do that every day, without the dark room. Great idea for all of us who are doing better. Blessings to you, my friend.

Beermaker

j-o-h-n profile image
j-o-h-n

I'll drink to that....

Good Luck and Good Health.

j-o-h-n Thursday 09/28/2017 5:29 PM EST

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