Expiration date shock

I have to come clean here. I don't get on the forums very much. I've only posted a little over 40 times. Part of it is busyness. I'm just too darn busy all the time with my business. The other part is that all this time, my PSA has been on a slow, steady rise, but never over 1 (other than original diagnosis), so it would depress me reading a lot of the posts. I was just an ostrich with his head in the sand. I didn't want to think that my disease would ever escalate and need new treatment.

Well, now I'm stage 4. Metastases in the bones and some lymph nodes. I guess I've made the club where a doctor has told me life expectancy. 2 years staying on Lupron and Casodex alone. 3 years adding another hormone pill. Maybe 5 years with chemo. Now, I want to get on here to learn more about where I thought I'd never be. I still have a second opinion coming up on 6/22 with my doctor at MD Anderson. As it stands right now, I'll choose the more aggressive route. So, I'll try not to be such a stranger from now on.

Thank you Mattam. It may not have sounded like it from my writing, but I am staying positive and looking at all options. I was told that the Casodex was for 4-6 weeks for tumor flare from the Lupron. When my doctor was discussing treatment options, he said that I would be put on Zytiga (I think) and taken off the Casodex. I did have a little soreness in my sacrum where one of the spots are. It was nothing that I would have seeked treatment for. Just kind of a dull ache. But, we did 5 targeted radiation treatments on that spot. So, the Casodex might have been intended for that too.

I call B.S. on any Doc saying how long anyone has. This forum is full of stage 4 lymph & bone mets guys who have years of <0.01. (me 4.5 years) Get your 2nd opinion and get started exercising to get ready for ADT.

Good evening Sparky
You have had a long PC journey already. I see where you are coming to MDA. Is it here in Houston? I did my salvage radiation there and it was successful. I know, they know, what to do for the most complex of cases. I certainly understand being busy with a business. After twenty-eight years, I sold my company a year ago. This week was the first "freedom" vacation I have had in my working life. This site has been so valuable for information through my 15 year PC journey. I really think I had PC two years earlier than when I was diagnosed. My fear of a biopsy and what I would consider a lack of assertiveness from my local doctors, put me in a much more negative prognosis state. Changing from local doctors to world class doctors in the Houston medical center gave me a more promising outcome. God guided their treatment plans, their hands and eventually their skills at planning radiation. Your stage will be something they deal with everyday. MDA is one of the best places you can trust to help you get the best treatment for your situation. These are encouraging times in your battle with PC. Much different than when you started 15 years ago. Keep us posted.

Just this morning I was thinking about getting a T-shirt with this caption.

Past-expiration Date

Statistics are for lying politicians.
During my castrate sensitive years, the statistics said 3-5 years with 50% survival. I went 8 1/2 years. And I'm still kicking.
When I became CR, my Onco finally gave his input (based solely on statistics) on my life expectancy. Another 3-5.
I'd rather rely on the anecdotal evidence of my fellow travelers, many/most have been on the newer treatment for 8- >10 years.

From the movie Papillion: "Hey you B-tards, I'm still here."

"Good to hear that you are staying grounded..."

so Sparky9 you're an electrician?

Your PSA certainly shot up in a hurry (0.98 to 3.93), but that's water over the dam. As others have stated, you are likely to get the very best therapy from the MDA oncology group. My best wishes!
Expiration dates are for sissies anyway...😊

Sparky9 said...
Thank you all. Such good and encouraging information.

@F8 - Yes, I'm an electrical contractor.

me too man. hang in there sparky