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MDS Myelodysplastic syndromes

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Old Wed Feb 9, 2011, 10:01 AM
DarinV DarinV is offline
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MDS & Chronic Fever

My Mom (67) was diagnosed with MDS in October 2010. With Blasts of 6% I believe she is considered to be intermediate 1.

She began a regiment of weekly shots of Procrit. After 6 weeks they added a shot of Neupogen. After her second week of two shots, she was suffereing tremendous pain, accompanied by fever. She was admitted to the hospital and stayed about 9 days. She was given Cipro her entire stay. She did receive 2 units of blood when her red blood cells went below 8.0 It was explained that she had a bad reaction to the neupogin and there must have been an underlying (unkown) infection.

She then went to rehab with the goal that when she gets home and regains strength, she would start Vidaza.

Every night her fever would go to 101 -101.5. The fever was managed with Tylenol, and it was explained that fevers sometimes accompany MDS. After two weeks in rehab, her fever spiked to 103.4 and she was sent back to the hospital. Her ankle was swollen also.

She has been in the hospital for 9 days now. Her red blood cells dropped to 7.10 and she has required 1 unit transfusion to keep her counts up. An infection has never been indentified. She remained on Cipro and the swollen ankle(s) cleared up. They were going to send her back to rehab two days ago, but a fever 103.3 came back again. Infectious disease is taking her off the Cipro, saying there is no need as they can not spot an infection.

My fear is that there is something at work in addition to the MDS and that it will not be caught until it is too late. The Dr's say that based on her blood counts they do not feel that the MDS has progressed to AML.

It is extremely frustrating not having answers. I have read many threads to try to find a new angle. Does anyone have any thoughts?
Thanks,
Darin
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Old Wed Feb 9, 2011, 05:29 PM
Gokcen Gokcen is offline
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fever ....

in 2009 from may to july, my mother had around 65 days high fever... was in several hospitals, they gave her several kinds of antibiotics and many blood transfusions.. and nothing changed around 2 months...suffered because of high fever 38-39.5 C.
after 60 days her fever started to decrease by itself..
doctors couldnt diagnose anything...
after fever decreased to 37-37.5C in july, doctors decided to start cortisone and send her back home, without any diagnosis.. .. 40 mg cortisone started and decreased the dosage time to time untiill december 2009.. then she stoped taking cortisone.

and february 2010 she got very sick, very bad pneumonia, got several blood transfusions..
in april 2010, she had her first bone morrow biopsy!!! and min % 50 blast AML ...
may 2010 she had intensive chemo.
since july 2010 she is on videza...
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age 62 - MDS-AML dx april 2010. %45 blast.
(induction chemo may2010 + 7 cycle vidaza), Blast %20 july 2011 ...
Haploidentical SCT Sept2011,
risky- rough days... going fine so far !!! jan2013
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Old Wed Feb 9, 2011, 06:34 PM
Neil Cuadra Neil Cuadra is offline
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Darin,

Unexplained fevers seems to be unfortunately common. See this forum thread for some experiences of other patients.
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Old Thu Feb 10, 2011, 08:49 PM
DarinV DarinV is offline
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Mom is starting Vidaza tonight in the hospital. Her fever is 101.8. They found her potassium to be low. Also, they found mucus in her stool and don't know why. It seems to me she is either going to turn in the right direction or the wrong direction soon. Not sure which? I know my assumptions are based on frustration, but how long can this go on with the fevers and other ailments?
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Old Thu Feb 10, 2011, 11:00 PM
tytd tytd is offline
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fever

Hi Darin V, I was just curious as to whether your mother had low white cell counts or neutropenia which might predispose her to fever with or without infection. Do you have her blood counts? I suspect her infectious disease MD has checked for colitis with C. difficile if she has mucusy or watery stools, especially if she's been on Cipro for awhile. Good luck. Hope they find the cause of the fever before starting Vidaza. Tytd
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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