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Hi Erica,
My husband did the High Dose Cytoxan at Hopkins back in 2002 under the care of Dr. Robert Brodsky. I highly suggest you get a meeting with him directly to discuss your options. HiCy is most successful when it's done as the first line of treatment. And, the efficacy drops for those who failed ATG/Cyclo.
John had a difficult time with the treatment. Mostly from the anti-fungals and anti-biotics used after the treatment. It took him 84 days for his white count to kick in. During that time, lots can happen as you already know. But everyone responds differently and there's really no way to predict how he'll do. John is going on his 10 years anniversary this June and he is in a partial stable remission. His white count is normal, his HGb stays at about 12 - 12.5 and platelets are in the 120K range.
Have they discussed a BMT as an option? Hopkins also does a new protocol using HyCy after a BMT to minimize graft vs host disease. So please speak with Dr. Brodsky to find out all of your options.
Please contact them and discuss your options.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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