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Re: SAA & progression to MDS

Date: 11 May 2004
Time: 08:53:22 -0400
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Marlene, Thank you for your response. Things have been a little hectic lately. They did not do a bone marrow biopsy at Johns Hopkins. The local Hemo/Oncology group wants her to have another bmb to rule out the MDS because they say there is not point in going forward with the cytoxan if anything has progressed to MDS. I think it is more just to rule it out completely. She is going to have a port put in next Wednesday. This was brought up because her iron levels are way to high from all of the transfusions and they do not want her doing the injections because of some sort of bruising that occurs from the drug they are going to give her to bring the iron levels down.It will just make it easier for her all the way around. we had a family meeting and all have finally conceded to let her drive herself to the hospital 3x a week for her transfusions. This made her very happy. She is feeling very well and the blood pressure is perfect ever since she was taken off of the cyclosporin. It still amazes me to see her and see how well she looks and to know that she is also so sick inside. My husband and I have an apartment unit (duplex) and Marge will be moving into the downstairs apartment next weekend. She has been living with her brother and sister in law since she came home from NIH last August so she is very much looking forward to some independence again. Once she gets settled she is going to make her decision about her next step.
Thank you again for your responses and I will keep in touch.

Last changed: 05/11/04