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Kellie DeVitoParticipant
Thank you! He just started Dacogen and really wasn’t on any meds before….but we plan to try allergy pill and doc suggested Prilosec too, so we will see!
Kellie DeVitoParticipantHello. My father was dx with rcmd about 6 months ago. His main issue is very low white cells/neutrophil. He’s had terrible mouth sores last few months and nothing worked until his doctor recently prescribed a steroid mouthwash and neupogen shot every 5 days. He’s had considerable improvement in the last week and is finally eating after 2 months. I would ask your doc about the steroid mouthwash and see where white cell count is at.
Kellie DeVitoParticipantHi Ray. Neupogen worked,for like one day, then neutrophils plummeted, so trying to get a shot schedule in place. Lots of blood draws! Last labs show that platelets are down from about a month ago, 74 to around 58 now. But doc still says that’s ok. My dad feels fine but the weight loss is bothering him. He’s down to like 158. We assume this is from the disease. What is TPN that you mentioned above? Hard to know what the level of progression really is….this all seems so unpredictable!
Kellie DeVitoParticipantHi Ray. Meetings went well. None of the transplant docs think he’s in need of one now, but we started the matching process since it can take awhile. He had his first Neupogen shot today. U of M doc thinks that’s the best approach now since his WBC is so dangerously low. Other counts aren’t all that bad….so they say! He’s in the intermediate risk category. Presently, my biggest concern is significant weight loss….they ran thyroid test which was normal. This seems to have all 4 of the doctors we’ve seen puzzled. My dad feels good and can’t believe anything is wrong with him, but is worried about the weight. I guess we’ll make him start drinking Ensure! Should know in about a month what his neupogen shot schedule will be. Thanks for checking in! Keep in touch.
Kellie DeVitoParticipantHi Ray. We are meeting with Transplant docs ay 2 centers next week. Karmanos and u of m. I’m worried that since my dad is intermediate risk and not high, we should be more conservative….he has good quality of life at the moment and no match for donor so was worried about trading mds for g v h disease or worse leaving him with diminished quality of life after transplant. Second opinion doc said 24 percent chance each year of progression to AML and life threatening low white count so my dad is now really considering transplant. He’s 70 and “fit” as,they say now. Whole thing is just really scary. Glad to hear you are doing well!
Kellie DeVitoParticipantHI Ray. Glad to hear you are doing well. Where did you have your SCT and was it a related or nonrelated donor? GvH disease is really what is keeping my dad from doing this. He’d have to have an unrelated donor match as he has no siblings and I am likely not a match for him.
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