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AA Aplastic anemia

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  #1  
Old Thu Jun 7, 2018, 04:51 AM
ASQ ASQ is offline
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ATG treatment completed

My wife who is a 58 year old, recently diagnosed with SAA has just undergone ATG treatment .This is her 18th day in hospital and expects to be in another 4 or 5 days yet . She has developed a fungal infection and is on IV antifungals so will be discharged when she is well enough to take oral antifungals .
Her consultant has told her that the search for a bone marrow donor will continue (no sibling match ). The plan is to have transplant in the future .
One thing we have learned is the difficulty in distinguishing between SAA and hMDS . We were told that my wife's results BMB/A , CBC and blood film have been viewed by several senior heamatologists and opinions differ as to what she actually has. They all agreed that in the absence of a matched donor ATG/ cyclosporine treatment is the route to take .
We shall now have to wait and see how counts react over the next few months .
Regards ASQ
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Old Sat Jun 9, 2018, 12:03 PM
Hopeful Hopeful is offline
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Hi ASQ,

I hope your wife is fighting off the fungal infection. That is one of the biggest risks when you are immune suppressed.

I am a hypo-MDS/AA patient. My doctors's spent a lot of time trying to figure out which one in the beginning. Now we see it as just a label, as some types of hypo-MDS are responsive to ATG. The MDS portion of the disease may be just that more blood progenitor cells are destroyed during the immune attack, leading to dysplasia.

When I had my treatment in the beginning, my doctors said it may extend my life 10 months. They also thought that my chance of responding was less than 20%. Now I am almost 10 YEARS out from the ATG. I am cyclosporine dependent (low dose) but that is a small price to pay for life.

Hopefully, your wife will have similar luck and you won't have to go the transplant route.

Was your wife tested for PNH and did she have a small PNH clone? That is one of the positive signs for response to IST regardless of whether it is AA or MDS.

Best of luck!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Sat Jun 9, 2018, 01:55 PM
ASQ ASQ is offline
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Hi Hopeful
Thanks for your reply . Good to hear you are well 10 years on from ATG treatment . Long may it continue .
My wife's fungal infection has improved quickly, all being well she expects to be discharged on Monday .
She does have small clone PNH , it's encouraging that this makes IST more likely to be successful . We shall be watching subsequent CBC's over the next 3 months fingers crossed hoping for a rise in levels .
Cheers ASQ
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Old Sat Jun 9, 2018, 10:47 PM
Hopeful Hopeful is offline
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That is very good news that the fungal infection is under control.

Continue to be vigilant while your wife is on high doses of Cyclosporine. She may want to postpone any gardening, for example.

Also, the 3 month mark is for "early responders". Being a slow or late responder isn't necessarily a bad thing. I had only mild improvements at 3 months. My counts didn't start trending upwards until about 7 months out.

Keep the faith! Waiting is the hardest part.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #5  
Old Sun Jun 10, 2018, 04:01 AM
ASQ ASQ is offline
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Hi Hopeful, My wife is a keen vegetable grower . It looks like I'll have to put my boots on and take over the allotment duties . No doubt under her strict supervision .
Regards ASQ
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