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MDS Myelodysplastic syndromes

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  #1  
Old Sun Aug 3, 2014, 11:35 PM
chong chong is offline
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Location: Penang, Malaysia
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Stuck with MDS

Hi, my husband was diagnosed with MDS with AML M2 Leukemia last year, and had just gone through stem cell transplant in April 2014. He had an autologous transplant due to unavailability of matching donor.

So far, he is recovering but his blood count has been stuck in a range for a month now. And it is still very low. Dr says that it is because of his MDS background which an autologous transplant could not cure. I don't know what to do, how it will affect us and what to expect. He is otherwise in good condition.

Does anyone here have a similar situation or know of someone who does?
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Old Fri Aug 8, 2014, 11:34 AM
Neil Cuadra Neil Cuadra is offline
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I haven't heard of a situation exactly like your husband's, but if he still has MDS and the low blood counts it produces, what does the doctor recommend doing about it? The possibilities for treatment may be the same as other patients with MDS, including growth factors, demethylating agents or other drugs targeting MDS, or experimental drugs. I wonder if the doctor thinks that it's too soon to judge the results of the autologous transplant.

Which of his blood counts are low? Is he getting transfusions?
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Old Fri Apr 24, 2015, 12:56 AM
chong chong is offline
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update

Just wanted to update that my husband's doing fine so far. His blood count is currently 4.5 (wbc), 11.5 (hbg), 115 (platelet). Platelet count is still a little low, but increasing slowly. He exercises every morning, so I think it helps.
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Old Fri Apr 24, 2015, 12:08 PM
Neil Cuadra Neil Cuadra is offline
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Thanks for giving us an update. Your husbands counts are all on the low side, but not drastically low. He'll be safer as his platelet count increases. I think that going from AML M2 to stable counts in a year is a success story. Congratulations.

Some people would have trouble exercising with below-normal hemoglobin, so it's great that your husband can exercise regularly. Exercise doesn't directly improve blood counts (in fact it temporarily consumes the oxygen that hemoglobin is carrying around your body) but it helps the body in many other ways that improve overall health.

I've read advice about exercising with low platelets (here is an example) and they almost always focus on precautions for people with extremely low platelets, such as below 50. For someone with platelets of 115, the cautions aren't as severe, but it would still be wise to avoid activities that leave you banged up. A workout at home or in a gym is a lot safer than contact sports!
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Old Sat Apr 25, 2015, 05:34 AM
Cheryl C Cheryl C is offline
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Great that your husband is doing so well and I'm sure his exercising helps a lot. I can start the day feeling quite unwell, but invariably a half hour walk in the fresh air changes that completely. It's quite amazing.
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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