Time to get back in the PCA fight...

Hello all, it's good to see some familiar members are still here helping others navigate this terrible disease. I've been ignoring my progression as I accepted that I am incurable. Trying to live life as best I could with supplements and delaying the inevitable treatments. It's been a good 11 years since surgery, which I'm a little surprised this day has not come sooner. The only real symptom over the last few years has been chronic fatique. But now, I have some rather moderate pain that is being controlled with ibuprofen. I already have stomach metaplasia, so I need to be careful.

It's been a real slow process here in central Florida to find out where I am in my journey. Here is what a recent CT scan without contrast has revealed. I have multiple involved lymph nodes in my pelvic and groin. There is also a mass impeding my bladder base, but not sure if it is nodes or something else. I also have a bone met in my hip. I just had some more scans done, but wont get the results until next week. I also am in the scheduling process of getting a biopsy of a node, the mass and the bone met.

My new MO wants me to start Lupron + Taxotere. But I am seeing others going with Lupron + Zytiga or some other treatment route. I think I need to reiterate to my MO my desire for QOL over time left. We agree that I am incurable.
I also need to address the moderate pain I am experiencing that is causing me to limp and at times unable to walk.

So, I wanted to ask all of you what you think my treatment plan should look like with emphasis of pain management and QOL. I dont want to do anything that could exclude me from a promising study. I of course, am hopeful, that a miracle cure could be found in time.

Thank you in advance for your thoughts.

Startech, I am fairly new here and hope you can find some help here on the forum. I have read several posts here about the new treatment LU-177 that some have been on with great success so far. Maybe those that have gone that way can help. In any case, my best wishes to you and your family regardless of what you decide.
Jack

Post Edited (Jack64) : 4/15/2022 2:45:57 PM (GMT-6)

While it is good to hear from you Startech, I wish it was for another reason. If my memory is correct, I met you in Rochester at Worried Guys GFMPH. Perhaps the additional test results might provide insight into the best approach for you. I hope that you find some relief for the pain, and answers to your hip and walking problems.
Michael

Hello Djin, yes the Dr.s wanted to throw everything at it. But, my research at the time showed a very low percentage of a chance it would work. I was willing to do low dose SRT, but the RO would only offer full dose and wanted me to also do 3 years of ADT. At the time, I thought that was over the top since I was pulling 0's after RP. My best to you also.

Hi Jack64, I dont qualify for LU 177 since I am castrate sensitive. I am aware that I could go overseas, but I am not at that point yet. Thank you for the good wishes and I wish you the same.

Hello Steven S, I dont qualify because I am still castrate sensitive. Thanks for you suggestion anyways!

Hey there 60Michael, yes I was there in 2016. I agree that the new results may shine light on my path. I am just trying to prepare myself as not to waste any more time. Appointments here are averaging 3 weeks out for all medical services, so just trying to get my ducks all in a row to avoid any delays. There were a lot of new faces at the 2016 GFMPH and I had a great time meeting with all. Glad to see you are still active here, although I wish we talking about fishing or something else. The pain I am currently dealing with is preventing me from going to the Cajun GFMPH in a couple of weeks. I hope you can attend more of the meets.

Thanks Prato and thanks for your moderating.

Stephen S said...


I think its great you lived these 11 years the way you did. If you do not mind me asking, How did you mentally/emotionally/spiritually steel yourself to make that decision? Did you basically decide that until it became a tangible issue, and not just a psa number, you were going to let it ride?

That is exactly right Stephen. As long as I was feeling good and able to enjoy life, I ignored my cancer. I continued to do psa's and scans to monitor the progression. I have a clear understanding why others go ahead and start treatment and who am I to question them. For me, I figured if the treatments were going to make me feel bad, I might as well put it off as long as possible and then pay later. Welp, payment is due now and I am prepared as that was my plan all along. As far as making this decision, it has taken a toll on me mentally and emotionally. It's not easy to just forget it. Every morning and evening, I am taking a handful of supplements that remind me of my cancer.

This is my way of dealing with my cancer. I feel everyone has the right to decide for themselves what their journey down the road looks like.