DavidE, checking in

I'm not a regular visitor here, off and on at best. Regardless I thought I'd take a minute and post an update. After 6 months on DES my PSA rose three months in a row and is now 81. (if you're not familiar with my case, see my signature)   While we try to line up the one of three options that appeal to us most (XL 184, Abiraterone, or Provenge) my Oncologist decided to try high dose Casodex. I'm not counting on a long response time, but you never know. What I am hoping for is a little stability in the PSA rise from 36 to 52 to 81.   XL 184 would be our first choice due to the preliminary data regarding bone mets. I am not eligible for the the current Phase II becasue I have no organ involvement. It kind of stinks when your cancer is not 'bad enough'! Rumor has it that there will be an additional Phase II early in 2011 that I would qualify for, but it's not 100%.   I have submitted an application for the Phase III Abiraterone trial in Los Angeles and hopefully we'll hear some news next week. This is the 'compassionate arm' of the study that provides the drug versus the change of getting a placebo.   Provenge is an option but availability is a concern and my Oncologist is working with Dendreon to determine if and where I could be treated. Kansas University Cancer Center was recently approved as an infusion site but there is no local extraction site. From a patient perspective, this is rather frustrating. What it means is I'd have to travel to Omaha or St. Louis or the most likely case would be three trips to New Jersey. So, that's it in a nutshell - happy holidays and peace be with you all!

David, thanks for checking in, good luck in your next step.

Thanks for the post David and as always you are a great inspiration. Chat soon on facebook.
peace to you
Dale

I'm back!

Well, I never really left.

Since my last post:

Jan 3rd - PSA was 142 so I stopped High Dose Casodex
The Abriaterone clinical trial site in LA filled up (long story for another time)
I have been accepted to s site in Atlanta and will go there this week.
If it all works out, I'll get the medication and be home by the end of the week.
I will have to return to Atlanta every two week until we can transfer to a site
closer to home. Omaha (2.5 hours away) is supposed to open by late Feb
and a site in Kansas City is in the works.

I also have received approval from my insurance company for Provenge but will hold off on that
for now becasue of my PSA.

Good luck, David.

Good luck David. I read through your blog. We are your neighbors, living just east of the stadiums. A small advantage of going to Atlanta is you are escaping our COLD temperatures!

We love you David.
I can't wait for the show in July!

Tony

David,
What is your cutoff for Abiraterone?

Tony

David in SC: last June the pain in my femurs, hips etc got so bad I had to have 14 radiation treatments. At that time it was rather excruciating. Advil and Extra strength Tylenol did nothing. Oxycoden finally brought the pain down for about a week unitl the radiation kicked in. Not sure what to say other than excruciating; after 5.5 years (at that time) it was the first real pain flare up. At times it would take me 25-30 minutes to get out of bed just to go to the bathroom. Level? 10 without a doubt.

TC - as long as the pain symptoms are held off I plan to give Abby at least 4 months, possibly 6 as the doc in Atlanta suggests.

David FLHW

Thanks for sharing that painful memory and descritption with me. I am just thinking ahead a bit, and wondered. I understand the "10" pain designation, as for 51 weeks, I experienced that after my bladder/bladder neck was nuked to death by radiation and I wore a surpapubic cath the entire ordeal. The only thing that kept any pain at bay during that horrible year, was regular doses of Loratab 10/500.

How fast do you get relief from the "spot" radiation for your mets? Does it take several treatments before relief, or is it more of a gradual thing? And how long does the radiation keep away the pain, i.e. days/weeks/months?

If these questions are too painful or personal, no need to answer. Just trying to learn more about a person at your level of progression.

You are a hero, to all of us here, a mighty warrior against the PC monster, and to me too. Bless you, brother.

David in SC

Well tell it to get to work. Kenny Chesney and Zac Brown are awaiting us in July. WooHoo!

Tony

Hi David, i was 44 yrs old, at dx, last year with my desease signature as below so i have followed you story from the very begining of my battle with the enemy. You have my admiration for the way in which you have conducted your life during the progression of this desease an although i have a very positive outlook at the moment i often wonder where the strengh comes from as the symptoms get worse.I wish you luck with your battle and hope that you continue to be courageous and positive at all times.

                                     regards Lee Wainwright.