Could use experiences and support now

zufus said...
thank you all for your replies and support it is very heart warming to receive when you need that community of mindset on medical discussions and care.....the pain has let up just recently after 3 drugs and about 3-4 hours after the radiations. I cannot wait for the radiations to eliminate this pain issue as it did on my other prior sites.....amazingly it can work well, thank goodness for that.

David G- very decent of you reply and with your moms examples, I sympathize to you both in those huge struggles, as you mentioned it seems the pain is worse after radiations atleast for the first 2 sessions. When I did L-4 lumbar it was different and pain was better immediately after the first session which I could barely believe. I hope I don't have to take the heavy duty drugs as your mom is using, atleast not at this time. I know at one time I surely probably got under your skin on this forum (sorry about the passionate side of discussions on PCa, it happens to any of us).

Ralfaz-I am aware of Xofigo and will keep it in the quiver as a possibility right now. I have not gone onto Xtandi or some other things, never had chemo either.

John T- glad to hear from you
Boogee- will look at that link and see what I can learn from his experiences
Purg- I think I can get past the longer term pains, atleast on this femur issue, then whats next/????

All others, appreciate your replies and read them all, pretty nice group of supporters and you guys do nice works for others, I commend you for that.

Zufus the strength of this site is it's peer to peer support. I've seen you support many men and women here in 3 years and your contributions on Yana are significant. All the other stuff is just noise.Right now you need more support than most others but in many respects we all here have a shared identity and psychic unity because of our shared disease. Hope the pin and radiation will help if you go that route and glad you still don't require strong pain meds.I'm rooting for you.

ps - passion is good, and let's face it, a group of middle aged and old men can use as much of that as they can find.

Zufus,
Even through your pain you are still trying to help men by recommending a test. I rarely understand what Logo is talking about but I agree with him on this;"You are a good.man"!!
Bill

Bob,

Just read this post. Soory to hear about the pain but now sounds like you are getting some relief. I too am a fan of Dr. Myers. I remember his out of the box success with Sprycel + Zitiga for bone mets. You have helped many people here on HW including me when I was diagnosed. Thank you. Yes, you are a good man. Take care.

Robert

thanks again guys my cup runneth over with your kindness, who wouldn't enjoy receiving such from others with goodwill? I have avoided chemo because I can (lol), the doc has suggested it and I really love the doc I have (10 yrs.) with this guy almost and he is a jewel with an open mind and not one to pressure a patient into any particular protocol, suggestions and recommending sure and that is good too.

I think my back pain kidney area yesterday, although really painful and hard to even walk around, is because of being constipated or urine back up (maybe) anyway today that pain is almost all gone, just some leg pain happening. So, comparatively today looks way better, session 4 happens and 6 left and cannot wait for the pain relieve to conquer this issue.

Gunfighter (that was a unique comment-LOL) Logo has his own languages with similies or metaphors and stuff, rather a unique form of poetic language, actually makes you ponder the words.

Thanks again all.....another day in the dragon slayers life....

Bob,

The dragon doesn't always win and you still have a well appointed quiver. You don't need condolences, you need to focus that incredibly analytical noggin of yours on your next move. You've lifted so many of us off the canvas that the wizard should give you some sort of testimonial. I just completed a round of Xofigo combined with Xtandi and came out the other end with some favorable results. This would probably abate the pain and the survival benefit is well documented. Ramping up the estro patches could help shield the bone also as you probably already know. XL184 is in the pipe. Some of the most effective treatments are still in front of you Zoof. I'm one of Snuffy Myers"kitchen sink gang" so the combo approach has been a way of life for me but life is the holy grail on this board and yours is far from over good friend.
Keep us close to your situation.

Jim

zufus, sorry to hear that once again you have to navigate the "Twilight zone" (as you used to call the murky treatment options). Nothing but good thoughts coming from us. I recall logging into the Wednesday chat session over four years ago and you were the only one left on the call. At the time I didn't have a clue but you sure impressed me with your willingness to help and knowledge.

You're the guy I always read, you'll figure it out and will be leading us as always.

Our best to you,
Jake