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MDS Myelodysplastic syndromes

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  #1  
Old Mon Sep 17, 2012, 09:31 PM
estelle estelle is offline
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MDS patient has low fever for 1 month, what to do?

My father was diagonized to have MDS in 2008 when he was 72 and the treatment was effective. After around 1 year treatment, both of his blood and bone marrow test results went back close to normal. The doctor even told him to stop medication just take the blood test every two weeks to keep watching. However since last Nov. the blood counts began to drop down(white blood and platelet), he went back to the medication which didn't work as well as before though. Now, the red blood count also dropped. We recently are facing a problem. He has cough and low fever for over one month. His body temperature (oral) is around 99.1F in the morning and 100 F in the afternoon. He had Xray, the doctor suspected him to have pneumonia but not positively, so prescribed IV antibiotics. My father had the antibiotics for 7 days, but it didn't help with the fever. The cough is a little better but still not over. We had to stop using the antibiotics since the white blood count became even lower. We don't know what to do with this situation. His appetite also became worse in the past 2 months. We don't know how to deal with the situation..... any suggestion? What kind of medication should MDS patients take for situation like cold, fever etc to avoid decreasing blood counts. Any advice or share of experience would be appreciated.

Last edited by estelle : Wed Sep 19, 2012 at 03:49 AM.
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  #2  
Old Wed Sep 19, 2012, 03:20 AM
Cheryl C Cheryl C is offline
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You could perhaps try some natural therapies like echinacea, or olive leaf extract. They are good immune system boosters. Consult with a naturopath re the correct dosages.

Hope you find a solution to these difficulties your father is experiencing.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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Old Wed Sep 19, 2012, 03:46 AM
estelle estelle is offline
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My dear father is hospitalized today. He couldn't handle the situation of having fever for long time and couldn't eat much. He felt lethargic and even found it difficult to walk. He probably will need transfusion. What bothers us is the fever. I don't know what medication other than antibiotics the doctor would use to fight the infectious. My parents tried to avoid letting me know the situation coz they don't want me to be worried. I didn't get the opportunity to read the Bone Marrow Biopsy report till recently, I haven't got the CBC from them yet. They told me CBC shows worse situation than Bone Marrow Biopsy result,is that normal? In the BMB report, Neutrophil is 15%, Eosinophil is 1%, Hct 10.5%, , Lymph 68%, blast 4%. The shapes of all the cells are generally normal. No megakaryocyte found, platelet is low. No cancer cell found. The result is MDS-RAEB. I know there is RAEB-1 and -2 from reading, it is said 5-9% blasts is RAEB-1 AND 10-19% blasts are RAEB-2. I am a little confused about this.Anybody who knows how to read these numbers can tell me, how severe it is? My father has been taking Tretinoin,Thalidomide and Calcitriol which did work for him before but seems not anymore. Tonigt I just read some posts about Vitamin K2 and D3 might work to improve red blood count and platelet, it is said it is for low-risk patient. I don't know if my father is still low-risk... Anybody could tell me? He has visited a few doctors and hasn't found a right one.
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Old Wed Sep 19, 2012, 03:59 AM
estelle estelle is offline
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Thanks for your advice, Cheryl C. We will look into it. My father used to be very healthy and energetic. When I heard my mom saying my dad couldn't walk. My heart is broken. I can't imagine!!! I know how bad the situation is now and I am so far away from them!!! My father used to get the nutrition from the normal diet.But his appetite began to decrease 2 months ago. They didn't tell me until a few days ago. Not sure if it is because the blood counts getting lower, especially red blood count? Recently, we made him to take multivitamin and protein powder. Hope this would help.
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