A new and exciting experience!

My days started here is a patient who has advanced prostate cancer (2006). I became a moderator, a lobbyist, and then to just plain old me today. In between and presently I serve as a patient advocate in cancer research and have a sponsor that pays my tuitions and airfares to various prostate cancer summits and meetings.

So what else?

This past month I have been writing papers for the Department of Defense on prostate cancer research. While I cannot detail what I write and about whom, I can say that this has been quite a new experience for me. The DoD is responsible for a large chunk of money spent of prostate and breast cancer research through research grants. In my setting I am reading many applications by young researchers whom are requesting grants for research projects to be performed in major institutions in the US. Again, while I cannot discuss specific projects, I will state that the future in prostate cancer research is looking pretty impressive. These young folks get it. They are just about all addressing issues we have discussed here with over diagnosis and over treatment and are trying to find ways to fix it. And it stands to reason that the industry sorely needs this type of research to be successful. It would certainly go a long way of uniting all of us on the topic of ODOT.

Just sharing what is happening. I have been absent quite a bit lately and being busy in research is a good reason. While in Chicago our SWOG committee turned to me extensively on patient perceptions in trial research. In two trials, for example, the PI's were looking to examine the effects of a novel approach to low and very low risk patients. They wanted to start the age curbs at 45 to 70yo men. I protested these age groups and they were changed for aged 40-79yo men in the trials. The reasoning ~ if we are going to tell men to get a baseline PSA test at or in the forties then we must include then in the research. I requested no top end but agreed that 79 will accomplish the goals. The reason I had for the high end was because these men can in fact live to 100 and we should include them in quartile with the low end age group. They agreed and these trials are moving to the next phases. I expect accrual to start in early 2014.

I did work with the researchers on a survey that sorely needed input from prostate cancer survivors. When I received word on it there were only 8 participants, and as of yesterday there are nearly a thousand. Thank you all for helping us out here, in the BCa forum and through Mike and the InfoLink mailing lists. One of the committees I serve on is also Social Media and Cancer Research and this survey proved how important SM will be in the future to patient input and participation. While that was not the goal of the survey, it was an interesting side bar in the SM committee.

Peace to all. I missed you all while on leave from the site. All is well on my cancer front. And my ministry front. And also my puppy dog sitting at my feet says hi too!

Tony

Thanks for a great update, Tony.

What is the DOD interest in PC, trying to make the connection, or am I missing the obvious again.

Not to sound like a broken record, but I don't think anything or anyone could ever convince me on the OD side of ODOT, but you already probably knew that. I won't say never, but it would take a lot.

I am completely onboard on the OT side of it, and have been from the start. I still believe there are many men being treated for benign acting low level PC cases that simply don't need to be treated, regardless of whom is paying for treatments. I would love to see something safe and fair to bring down those types of cases/treatments.

Sounds like the rest of your life is in good order, glad to hear that.

David in SC

DavidP,
The DoD is responsible for many cancer and other illness research that could affect the well being of our warriors. And because this program is part of the DoD there is excellent funding and legislative considerations.

CDMRP Info:
cdmrp.army.mil/pcrp/

The CDMRP was instated in 1992 and since has funded over $7.5b in research. Have a look at this chart and you get the picture:

tinyurl.com/ny4exyp

The HW Bush administration signed it into law in 1990. It has since been a key form of financing grants in the US.

I perfectly understand the OD part for any surviving cancer patient. I'll leave the debate out and just focus on what I see in action. Researchers and physicians alike are all on board with what is meant by the term and they are doing their very best to help address it. Whether we think it's an issue or not, it is clearly defined in the medical industry and it is well understood to be a major problem.

Peace. I hope this helps you understand the DoD piece.

Tony

Thanks for the update Tony and please keep up the great work you are doing as an Advocate for Prostate Cancer Research, etc.

You are an awesome Spokesman for the PCa Community.

Godspeed,

Bob

Tony give me a call when get a spare moment. 9am would be great exactly 9am

That sounds like a great job.
Keep up the good work.
Andrew

Tony, thanks for the update and for all that you do. As always, you 'da man!

Jim

Ralph,
It's worth mentioning that it was again the ladies that got this program kicked off with breast cancer advocates making enough noise. But today it is the #1 source of research grants for prostate cancer in the US. I wonder to think what you reviewed in 1998 compared to what is reviewed today in regards to research grants but as you know we can't say anything to each other as it is a non-disclosure role and contract. This is a terrific program that has been supported by ZERO and USTOO as well as by PCF and it is as you said vital to future prostate cancer research.

For anyone wanting to know more what we are talking about being reviewers have a look:

tinyurl.com/kjpbfuc

It took a year to become a reviewer and there is an interview process. It is not easy to become one but it is a very interesting gig. This is the first role I have been involved with remotely related to PCa where there is compensation. While I have yet to complete my first year, I will say that I am having some fun doing it. Good experience and a great cause.

Tony

Bill,
I won't be included in Sebelius meetings anytime soon. At the DoD program we deal with research and not VHA. Interestingly, at SWOG we are working with VHA to get them more involved in clinical trials. It's an area of concern that most of the IRB's at the VHA won't partake in trials. But that is not related to this effort.

Ha. But I'd be willing to send a meeting maker to Sebelius and she accepts I'll be vocal... I'm sure of that.

Tony

Ralph,
I can envision the challenges to get the applications to the reviewers as I've been in the technology business most of my life. CD's were available in 1998 but not everybody had the drives. Today they are much bigger and more graphical. The files sizes are too big to toss around easily and the online approach is definitely more secure. I would love to chat with you on that stuff some day.

You are still correct though, being a reviewer is interesting and very educational. You feel like you're being a part something really good. Getting the opportunity is not easy, but having an objective reviewer, I can see, is very crucial to the research.

Tony