CMML and high levels of LDH

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MollyP
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CMML and high levels of LDH

Postby MollyP » 22 Nov 2017 08:31

To recap my 69 year old husband was diagnosed with CMML in 2013, to be honest if he hadn't been diagnosed after a routine blood test it I don't think we would known about it. We have lived these last few years with it lingering in the background. Whether it would have developed further without the hydroxycarbamide he had that year we don't know. I thought I would document it here for future reference of others looking for information on CMML.

We didn't know about LDH in the blood until this year when it would seem someone may have been training someone in haematology and decided to do this LDH test on my hubby's blood at our local hospital. The LDH was over 2000 when it should be about 200 I believe, so it's massively up. We did find out yesterday at the centre of excellence that the LDH had been previously ok.

So we have been on another roller coaster,

Due to a rapid loss of weight (possibly down to my being on a diet and having hubby unwittingly joining in), he had a CT scan, a Pet Scan and then a thyroid biopsy. Basically all were clear and fine. So at the time it was decided it was all good and couldn't be explained and basically be on a vigilant watch and wait. So I told the family he was fine. Two days later He got a surprise call to say actually a bone marrow test needed to be done and off we go again.

It was thought he had moved into CMML2, but it's now decided it's CMML1.

During all of this hubby has a very sore arm, possibly a tendon or muscle injury, which is now undergoing tests, we know LDH indicates injury in the body, and he is in a lot of pain with it, but our CMML healthcare team dismiss this.

I would be interested to know if any other CMML patients have high levels of LDH themselves and if they know or can shed any light on why this might be.
*** *** *** ***
66 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK
April 14 Taken off Hyd' - low neutrophil
Aug 14 w&w
Jan 15 raised counts but retains w&w status
May 16 still w&w

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