Fresh off of ‘last week’s clinical trial’dosing day’ (see profile), I want to share some gratitude for all of you!
This community has provided incredible support to me and many other men over the last several years. The human connections, albeit virtual, with others who have gone through this before me and have the value of perspective is invaluable. From early in my journey when isolated and scared, to my current situation perhaps now approaching the status of ‘old guard’, sharing my own 2c.
I am thankful for all of you sharing your experience and perspective, being a source of humor and sympathy, and of course a tremendous source of advice to consider and information to build our strategy.
Finally to all of those who have traveled this trail before me and built the science, your literally the reason I am still alive and well.
Hope you have a good day ~ Chugach
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Photo- 2016 after Round 1 was behind me!
"Because in the end, you won't remember the time you spent working in the office or mowing your lawn. Climb that goddamn mountain" ~ Jack Kerouac
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Chugach
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I just read your bio and can't believe I'm finally seeing a story that sounds somewhat like ours. My husband (49) was diagnosed last year, further along than you initially were, with what we thought was a tailbone injury. Sure enough it was metastatic pc in his spine and the biopsy revealed neuroendocrine differentiation. Chemo failed and 2 hip fractures later in a time of total desperation we found the MSI high marker. He started Keytruda and it was a lifeline for us. Literally seemed to bring him back to life! We unfortunately have to make a switch now - he's had a spread into his shoulder and back in one of the hips. Currently blasting both with radiation, which is definitely helping. And we're hoping to get into a trial at Northwestern for a treatment similar to pluvicto: clinicaltrials.gov/study/NC... wish I would have found this group a year ago. I need to get my husband plugged in! He's a brave soul and has that same kind of positive attitude I see in your writing. Thank you for sharing. Seeing this was a good start to my day!!
No man should have to deal with this while in their 40’s (or 50’s). Your husband can reach out to me directly if he needs someone to talk with. Keep the faith!!
Great post! I bet many of us could repeat your sentiments! I’d bet that Daryl knows what he has created here, but not to the extent that some of us deeply feel. This is an incredible, incredible resource for patients, and is paving the way for other medical creators/institutions to provide support to their PCa - and other - cancer patients!
This is the most organic knowledge/support entity I have been a part of over almost thirty years!
Chugach - thank you for sharing your inspiring words. Your description of the benefits of this site for those who utilize are right on. And maybe more importantly, there are still men who are suffering alone with this animal and either haven't found MaleCare or don't feel they are ready. My hope is that a heartfelt message like yours finds it way to those men and their families. Like you, and I feel most on this site, I will do what I can to help make it happen.
Also, love the quote that is part of your signature! A mindset to live your life by for sure!
You attitude is exactly right. You are doing what it takes to stop or push back the progression while embracing life. I have read some articles saying that the younger you get it, that it tends to be the more agressive strains. It's an awful hand to be dealt but you have done well.
I was diagnosed at 57 which was considered young but seems there are more people, younger and youger with high grade PCa being diagnosed today. Mine is agressive but no neuroendocrine cells to my knowledge. I am now 64 and Zytiga is starting to fail, so I will find out soon what has been going on.
I wish you alll the best in staying healthy and living long! We are always happy to help however we can. Good luck!
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New on this forum, need help for my Dad please
