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AA Aplastic anemia

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Old Mon Mar 19, 2012, 01:13 PM
dfantle dfantle is offline
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Caregiver Needs with ATG Treatment

Hello, I will be receiving horse ATG likely next week thru Seattle Cancer Care Alliance (SCCA) which is part of Fred Hutch. I'm told I'll be in the hospital for likely 1-2 weeks, including the 4 infusion days.

Wondering what the typical caregiver needs are following release from the hospital. When I had my autologous stem cell transplant 1 year ago today, we were told I needed a caregiver 24/7 for 3-4 weeks following the transplant and this was definitely true for the first 3 weeks.

My husband is wondering how much time he'll likely need to be away from work for the ATG.

Any other tips would also be much appreciated.

Thank you,
Sent from my mobile phone
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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Old Tue Mar 20, 2012, 07:55 PM
Lisa V Lisa V is offline
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Dena, a lot depends on how you react to the medications, but it seems unlikely you'll need anyone there 24/7.

When Ken had his first ATG, most of the difficulties he had post-treatment were due to high doses of cyclosporine and prednisone, both of which were subsequently tinkered with, so by the time of his second one he was able to go right back to work without missing a beat. The cyclo made him feel really tired and also fuzzy-headed, shaky and hoarse, and the prednisone made him very irritable, in addition to some other physical side effects (thrush, rash). Basically he wasn't up to working or driving for a few weeks, was cranky and couldn't seem to communicate as well as he'd like, so it was basically just a matter of me driving him places or picking up things, and running interference for him with the medical providers, etc. I also gave him his Procrit and Neupogen shots (not part of the standard protocol), made sure he took his meds, and kept track of all of it, but it wasn't like I couldn't leave him alone or anything.

Of course he was lucky in that he didn't have any serum sickness or adverse reaction to the ATG itself. If he had, there would probably have been more caregiving involved. It certainly isn't in the same league as having a SCT, even an autologous one. Just out of curiosity, what was the transplant for, and did you develop AA post-transplant?
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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Old Tue Mar 20, 2012, 08:02 PM
Lisa V Lisa V is offline
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Sorry, I just read your signature. That answers most of my questions (and the edit function doesn't seem to be working).
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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Old Thu Mar 22, 2012, 06:26 PM
dfantle dfantle is offline
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Thank you Lisa. This was very helpful. No one, including my oncologist, who is on the AA-MDS board, nor Dr Young at the NIH who I saw end November can really say why I developed AA post transplant. My transplant appeared to work incredibly well and I healed relatively quickly from it. Seems to be a mystery to everyone and if neither of them can say why for sure, and no tests to date tell us why, it just seems to be one of those things. I beyond followed all the "rules" post transplant, ate extremely healthy, organic everything, avoided being in public... And get here we are. So horse ATG looks like we're going to have a party.

Best,
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great

Last edited by dfantle : Thu Mar 22, 2012 at 06:32 PM. Reason: Added More info
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