WOW its been a while since I posted- just an update

So I realize that it has been a long time since I last posted, that's my bad. Just been busy trying to live life, even with this crud. Thought I would throw out an update.

It has been 10.5 years (June 09) since I was diagnosed, 10 years (Sep 09)since my Prostatectomy and about the same time (12-09) since subsequent radiation.

My Psa continued to rise after surgery and radiation and it wasn't until Dec. 2013 that scans finally found it in 5 abdominal lymph nodes. So Jan 2014 I went on Lupron and a trial drug. After 6 months the trial drug was stopped because I developed Anorexia. 2015 was a drug free year. 2016 back on Lupron coupled with 2 treatments with Taxotere. 4 rounds in March and 4 more rounds in October.

I had a drug free break 2017, 2018 and 2019. All the while my PSA has continued to rise to numbers I will not share here.

Soft tissue, organs and bone scans every 6 months from Jan 2017 forward. Always been the same 5 nodes. PSA continued to rise but the nodes maintained relatively the same size and they are still measured in mm. I can't radiate the nodes as I have already had my lifetime supply of radiation. The locations would make for a tricky surgery and the possibility of side effects that would really screw with my QoL.

The last couple of months or so I started seeing blood in my urine, so a visit to the Uro was in order. I already knew I had a stricture. This would prevent using a normal scope for a look-see, so I was scheduled for a scan with smaller scopes under anesthesia. Uro said that my bladder looked like a bomb had gone off in there. Oh, radiation the gift that keeps on giving. While he was in there he biopsied 7 suspect locations for cancer and all came back clean. Not quite sure what he did in there, but I still am seeing blood in my urine and occasionally blowing out blood clots. Its been about 4 weeks so I hope this begins to clear up soon.

My last scans showed a slight change in my nodes so my Onco and I talked and I/we decided I would go back on Lupron for 2020. Had the shot about 2 weeks ago and so far so good. I tolerated it really well in the 2 times before so I hope nothing has changed.

I have purposely not shared my PSA numbers and rises over the years here on the forum. My numbers would absolutely scare the crap out of most of you and would certainly start a crap storm here on the forum. It is my journey alone and a plan that my Uro and I have subscribed to that allows me as much QoL as I can have. I also don't want to lead anyone down this path by inference or whatever.

So I just thought I would share another guy's trip through this Pca jungle and to say its been over 10 years and I am still here. I still believe that "Every Day is A Bonus and my only job is to choke the life out of them."

Sonny

Thanks for your update. You're doing it your way. I wonder if your oncologist mentioned adding Zytiga or Xtandi to the Lupron?

Continued good luck to you!

Great to hear from you!

Keep on keeping on, Sonny. Lupron, like radiation, is a gift that keeps giving.

Good luck!

good on ya Sonny...your non share of psa...and reasons therof...makes perfect sense...your sharing of the rest we thank you for

Sonny, keep it up! And drop in once in a while and let us know how it's going.

Sonny, as always, your attitude shines above all. Miss you man. I will call you in the next day or two.

Good to hear from you; miss you sir. Still hanging in here as well... Keeping an eye out for the next newest shiny treatment while I keep bobbing and weaving on the lupron/zytiga dance.

Sonny,

You're likely right that sharing your numbers would scare some of us taking that same journey. However, I wouldn't sweat that too much since, and I think I speak for most of us in saying fear is already large part of the game. Like you, I went the prostatectomy route and radiation a few months later when it became apparent that ripping out the prostate did not solve my issues. Definitely agree with you and your doctors putting an emphasis on QoL. Quantity doesn't matter without quality. Prayers and best wishes as you continue the fight.
Bill

I always hear the old song when I think of Sonny. Apparently a lot of people remember you being very helpful & could sing along.

Sonny, yesterday, oh, my life was filled with rain
Sonny, you smiled at me and really, really eased the pain
Now the dark days are done, and the bright days are here
My Sonny one shines so sincere
Sonny one so true, I love you...I love You..

Hey Sonny, it has been far too long since we last met! You are an outstanding example of someone following his own path, taking charge of his own care. It takes a lot of personal integrity and willpower to do that, especially when you're kind of coloring outside the lines! You're inspirational.
Some of us face aspects of this disease, make treatment choices, that others might not understand or support. It is our path, and these are our choices. My body, my choice...
I support you, my friend! All the best.
[edit to add, I don't get here much myself, lately, for a few reasons.]