Quote:
Originally Posted by Ryan Jay
Something that I was thinking about the other day:
Are cases of successful ATG/Cyclo treatment underreported in social circles?
It would seem that many people who achieve remission move on with their lives, (as much as they can) or may not feel comfortable telling their success story.
Personally, I would find it a bit awkward to announce a great response to ATG while others have struggled so much with treatment. On the other hand, I could see where an ATG success story would give others hope.
I think this post gives you guys an idea of my state of mind right now as I slip into the weekly check-up/transfusion/ watch and wait mode.
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Hi Ryan, I loved your honesty. I know for myself I would love to have the knitty gritty questions answered. I always feel on the edge. Not even knowing whats coming next or what to expect. I think its quite helpful for people to be really honest here with good and not so good results. I panic about what is the next thing to expect. I realized that not everyone reponds the same but I do think there are trends. My husbands white counts are going up (20) and his platelets down(17). Feel like I just want the truth. What happens next? What are we waiting for? What can we expect to happen next? Its so the elephant in the room that no one discusses. Hope this helps you and gets people to talk more openly. I personally would like to hear all sides good and bad so that my husband and I can have an idea about whats coming. I think my response gives you an idea about my state of mind right now also. Most Sincerely, Rose McMillin