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Re: Need a Few Responders To Get The Party Started
Don,
Thanks for your recent post, however I am not sure what the request (i.e. the "party started") really means. Is it more than what we post on the discussion boards?
Re: Need a Few Responders To Get The Party Started
Allen:
Until recently this site included an online discussion where we PCa Warriors shared our trials and tribulations dealing with prostate cancer. My goal is to reestablish this valuable resource.
Don O.
Re: Need a Few Responders To Get The Party Started
Don, I think I understand what you are trying to do. You are right, this site is a valuable tool for those looking for information from those who have experienced it. I don't know what happened, but the last couple years has seen a decline in contributors. I don't feel it has anything to do with the site but maybe the world of changes we have all experienced over the last few years. The motivation to communicate just doesn't seem to be there. As an old timer now, I feel privileged to offer any help or assurance to folks who may be just are entering this cancer journey. However, I have not seen many inquiries or requests for such lately. It is almost like prostate cancer went underground again. Have we outlived our usefulness as mentors? Jon.
Re: Need a Few Responders To Get The Party Started
Outlived our usefulness? Heavens No!
It may take awhile, a little patience and as much effort as we can muster, but it's conceivable a PCa forum can be reestablished. We need only garner Mark Freedkin's support and keep plugging away.
It's not a sure thing but it's worth our effort.
To get the party started we three could provide a summary of our Pca Warrior's experience, comment on one another's entry and go from there. If the two of you agree I will submit my summary ASAP.
Re: Need a Few Responders To Get The Party Started
Thank you both for your passion and energy. What my limited understanding about these posts are what is missing from our individual stories that we update periodically. What I mean to express is that our stories are there for any/all researching warriors to read, evaluate, agree/disagree with, and/or make decisions accordingly. I'm likely missing something from your posts, but again, I see the story part of the site a valuable resource similar to what you might be suggesting.
Re: Need a Few Responders To Get The Party Started
A few years ago we had a very active site on YANA where PCa Warriors interacted with one another and seasoned Warriors provided support and guidance to the newly diagnosed. It's conceivable this forum* still exists and for one reason or another I am unable to access it.
In any event such interaction does not appear to have gained much enthusiasm here on this site. The lack of interest shone thus far causes me to crawl back into my hole AND FORGET ABOUT IT.
*First monitored by Terry Herbert...later by Mark Freedman.
Re: Need a Few Responders To Get The Party Started
Don, this IS that forum, and you are accessing it. It has just changed somehow and lost enthusiasm. I feel it has to do with the general condition of the country right now and the world. The last four years have seen some changes that have many on edge and disillusioned. Seems to coincide with the covid thing and the controversial 2020 election and the resulting issues of that outcome over the last four years. I personally gave up on healthcare during this period as other things were more in the forefront and medical care and maintenance became difficult to receive. "Crawling into a hole" as you put it seems likely what everyone has done over the past tumultuous four years. We should refrain from doing that as things may equalize back to more normal again and bring back the forum prosperity of the past. The list of victims may be overwhelming to new visitors, and they don't notice the chance to make inquiries on the forum. I always check the forum entries first but then I am familiar with the site and know it is there. Hang in there bud. Jon.
Re: Need a Few Responders To Get The Party Started
Super informative reply. It sounds as though there is at least a chance we could redevelop this site to the magnitude that it once was.
Methinks I will pull together a brief summary of where I am healthwise and post it here ASAP. Perhaps the few who have interacted recently will do the same and thereby GET THE PARTY STARTED.
Don
Re: Need a Few Responders To Get The Party Started
I was diagnosed with PCa in 2008. After a fair amount of research and hand ringing I settled on Proton Beam Radiation. Following treatment my PSA remained low and steady for three years, but regrettably it began a slow but steady upward trend.
After a fair amount of research I ended up consulting Dr "Snuffy" Myers. Following several years as his patient and a good many ups and downs my PSA returned to its slow steady upward trend. In 2017, after considering several treatment options, Dr Myers and yours truly settled on Xtandi which has effectively held my PSA at a consistent .02. "Amen and Halleljah"!
Best wishes to you and yours.
Don O.