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!
Advanced Prostate Cancer Survivor
Patient Advocate and Support Group Leader
Not a medical professional!!!
Post Edited (TC-LasVegas) : 10/21/2013 7:45:39 PM (GMT-6)