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MDS Myelodysplastic syndromes

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  #1  
Old Sun Jun 26, 2011, 07:36 AM
ellenemk ellenemk is offline
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Location: London
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Exclamation Length of time for test results - help please

Hello. This is my first post, and probably not the last. Any help at the early stages of my dads diagnosis would be greatly received.

My dad has just been diagnosed with MDS. The consultant here in the UK says that it is going to take a further 3 weeks (so almost 6 weeks in total since the bone marrow biopsy) to advise us what abnormalities he has and the severity. Please can anyone tell me if this is normal, or if you have experienced much faster results?

I would also like to know if anyone has any suggestions for aiding his immune system (he is suffering from mouth ulsers quite badly) and also fatigue? Until we get the results we are in the dark, (well pitch black actually), and would like to assist his quality of life in any which way we can.

Many thanks

Ellen.
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  #2  
Old Sun Jun 26, 2011, 09:27 AM
Dick S Dick S is offline
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They may be looking for any chromesomal abnormalites which in my case takes about an extra 7 to 10 days to get results. It may just be the availability of the labs in the UK.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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Old Sun Jun 26, 2011, 07:09 PM
Chirley Chirley is offline
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Hi,

It takes a couple of days to get most of the BMB results but about 2 weeks for cytogenetics.

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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #4  
Old Mon Jun 27, 2011, 03:08 PM
BerryP BerryP is offline
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Join Date: May 2011
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Being treated for MDS in UK

Hi, I can tell you it is perfectly normal in the UK to wait six weeks for Bone marrow biopsy results. I have had two done and both took six weeks cos they did cytogenetics as well. Think they had to send to Leeds for it to be done. The staging (basically how severe) also involves testing how quickly his body makes red blood cells. I have hypo MDS now when previously my diagnosis was Severe Aplastic Anemia, and the different between the two seems to be a chronosome defect which has occurred as a result of the disease. Your dad may have hyper or hypo MDS, and you should ask the consultant what chronosome or gene is affected. You should also be given a staging, low, medium or high risk MDS and some blood test results so that you can keep track of how he is doing. I know these things are a big shock, my kids were really shaken by it, but they can give him red cells to stave off the fatigue and other meds. He should definetely be given mouth wash for those ulcers. They give me the stuff all the time, and anti virals and anti bacterials may help as well. Its a pretty steep learning curve and there will be good and bad days but there are a few people from the UK here and most know a lot more than me so don't be afraid to ask.
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