I am new to this forum and to MDS. My mother, age 79, has MDS (diagnosed Sept 2018) with underlying lymphoma. She did chemo about 8 years ago for a complicated case of non-Hodgkin lymphoma and was in remission for a long time. The lymphoma is not causing distress at the moment, but it can’t be treated systemically because of the MDS. Her platelets are very low and she has been having platelet transfusions 1-2 times per week for the past few months, but they don’t hold for more than 24 hours or so.
She knows her condition is terminal and is facing it bravely. She is tired of going to the transfusion center up to 4 times per week for blood tests and possible transfusions, and her hematologist at MSKCC has just agreed to lower the transfusion threshold from 20 to 10 and to limit transfusions to once a week or as needed for bleeding. The doctor has told her that if/when she decides to stop treatment and start Hospice, she might live about one month longer.
Her doctor suggested Nplate (romiplostim) as a possible approach to boost the platelet levels. She would give the lowest possible dose, just to get platelets up to 20 or 30, but my mother is scared by the 30% chance of developing leukemia. The doctor says her numbers are dropping and she already has blasts in her blood and therefore, early stage leukemia. She feels it’s a reasonable option that would lessen the days at the infusion center. She was clear that either way, it would most likely be a bleeding issue that would eventually cause my mother’s death.
My mom’s two main concerns at this point are quality of life and time. She is very tired but feels basically OK. She is not interested in doing treatments that will extend her life only to be suffering and have a low quality of life, but she is also not quite ready to face the possible one-month Hospice time frame.
QUESTION: Does anyone (or a loved one) with a similar situation have experience taking a low dose of Nplate? Any advice? Side effects? Also, does the one-month time frame sound about right for ending transfusions to end of life? We are all trying to prepare ourselves. Thanks for your advice. — Kate
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