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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Dear Ryan,
Hi. I am the lady from a Boston suburb who inquired about your feelings on Lahey.
It has been 6 months since my ATG treatment. I don't know if i'm considered in remission since I don't need transfusions anymore. The big "but" to my situation is that my numbers never rose to a good level. My platelets have leveled off at 30,000, no where near what the docs hoped. My hemoglobin doesn't remain that stable; it is now 9.4 and soon I may need a transfusion; my doc said its ok if I may need RBC's 4x/year, that is still considered not an issue. I find this most confusing; don't know how I really stand
It would be more helpful if others did continue to share their stories either way. It just helps understanding that this disease has such various outcomes to the immunosuppressive drug treatment.
Its still early for you so do not get discouraged. Other forum members shared with me (and I am grateful for their input) how their numbers continued to increase a year and a half out of treatment.
Hang in there, Susan.
