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Old Sat Mar 31, 2012, 09:00 AM
marmab marmab is offline
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Join Date: Jul 2011
Location: Massachusetts
Posts: 67
ATG

Hi,

I am writing to say "ditto" to everything that Hopeful stated. If you do, in fact, have ATG/CsA treatment, you will probably have a better (not sure that "better" is the right word!) experience at a facility that is experienced in administering ATG, one staffed with expert docs and nurses.

And she is right about people not commenting or posting if they haven't had a bad experience. I sailed through my first ATG, so I've never posted about it, because many folks do have a hard time with it and I've felt that it would seem a bit smug, uncaring and unsympathetic saying that it was a walk in the park for me (but it was!). The hardest part, actually, was being cooped up inside for 5 days; I'm used to being very active and outdoors as much as possible.

I was in the hematology oncology/BMT unit of the hospital, so I had a large private room with a table and chairs by the window where I could eat, read, use the computer, hang out with visitors, etc. There was a solarium/library/lounge with a stationary bike down the hall. Wouldn't you know that there was also a Starbucks down in the lobby that I kept fantasizing escaping to, but the nurses indicated that would be pushing it.

The hospital followed the standard protocol in administering the ATG (pre-meds, monitoring, etc.) and the only reaction I had was a minimal fever the first night, after the first dose of ATG. That was it! Subsequent doses on the following days were completely uneventful. Expect that the ATG will do a number on your counts, though, so you will probably need transfusions which, again, were easy because of the PICC line (which makes blood draws, med administering and transfusions easy. I, too, have been transfusion dependent all along at about the same frequency as you). The ATG slowed my heart rate, which was continuously monitored, but this did not affect how I felt at all. When I got out after 5 days I went right back to my regular activities -- no sign of serum sickness, etc.. I am used to being very active and healthy, so maybe that helped -- don't know. Alas, though, I really did not have a response (well, maybe a tiny one 7 weeks out), so I am scheduled to go in Monday again for a second ATG. I'm REALLY hoping that I get some response this time!

All my best to you, and hoping that if you do go through with the ATG, that your experience will be as uneventful as mine. Hang in there and stay positive!

Marmab
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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