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It's disheartening to hear this. The lack of compassion from your hematologist is inexcusable. Quality of life needs to be considered. What good is it to keep her on prophylactic meds to prevent something that may happen when she has problems that need to be addressed now. A PCP may be able to negotiate with him around the meds. Protocols can be modified. If it's causing more harm than good, then something needs to change. The problem with specialist is that many are very narrowly focused and are only concerned with their piece of the puzzle. I hope you can find a PCP willing to take on your mom's case and advocate for her.
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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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