CMML and high levels of LDH

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MollyP
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Joined: 04 Mar 2013 13:01
Location: South East England
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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
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: CMML and high levels of LDH

Postby chris » 11 Jan 2018 13:19

Hi Molly

Very, very belatedly replying to this. I've lost the habit of looking on the Forum as I'm not so desperate these days to gain comfort from it!!
Plus I don't seem to have so much time these days - with 2 grandchildren in the last 2.5 years and another on the way, we seem to be in great demand for babysitting!! I love it! I never thought at one point in my MDS "journey" that I would see any grandchildren so every moment with them is so precious! Plus the old allotments taking up a lot of our time in the growing season.

I looked through all my old blood test results (of which there a re many!) but haven't ever had an LDH test. I guess it's a specific test for various things - including tissue damage so maybe the arm injury was a likely suspect? Has the level since gone down and has the arm healed?

Also concerned to hear about the possible changes to your husband's CMML classification but I hope that turned out to be nothing to worry about?
My consultant recently told me that CMML can behave like a lion or a lamb, so after nearly 10 years I guess I have the latter - for which I am hugely thankful!

Let me know how you are. PM if you prefer.

Take care

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
MollyP
Posts: 72
Joined: 04 Mar 2013 13:01
Location: South East England
Contact:

Re: CMML and high levels of LDH

Postby MollyP » 26 Feb 2018 01:15

Hi Chris
Good to hear from you and that life is good for you. Lovely to hear you are enjoying your grandchildren, we are getting our first one later this year. I am a bit like you, life has overtaken the MDS searching, I felt a bit bereft on the re classification but I have got over that now.
For the LDH saga it still remains a mystery, and hubby's arm is still not healed so it might be that yet. Went to centre of excellence last week and awaiting test results on LDH but other blood elements (waiting LDH and monocytes) were all in the NORMAL range, not sure I believe this yet. As always hubby is well and raring to plant seed potatoes, go skiing and get on the golf course.
A few years ago I knew a lady who had a common leukaemia that needed keeping an eye on, her bloods are now back to normal and after five years of all ok she's been been discharged from seeing a consultant, makes me wonder!
Keep up the digging and enjoy life
Love
Molly
Xxxxx
*** *** *** ***
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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