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  #1  
Old Mon Aug 26, 2013, 08:19 AM
Cornelius Cornelius is offline
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Join Date: Aug 2013
Location: Dublin Ireland
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Single lineage (white blood cell) MDS?

Hi, I am hoping I can get some answers or find someone with a similar condition to me. I have lived somewhat of a roller coaster for just over a year and I am still quite unsure about my condition and my diagnosis. On my signature below you can see my most recent bloods and they are close to the low for the WCC as they have been for the last year. They have had some volatility but WCC has stayed below normal for all the year. It would appear that other than my platelets, which have been as low as 147 most the rest of my bloods counts are moving to the edges or outside the normal ranges. Other than the WCC, NEUT and LYMA nothing seems too extreme.
In August 2012 I had a bone marrow biopsy and I was told that I had myelodysplasia by a hematologist in a local but major hospital. I was told my bloods and biopsy were reviewed by a team of hematologists and the doctor said he was 90+ percent sure I had the disease. He told my wife and I that in his whole career (he looked like he had been around for a while) he had only had one wrong diagnosis, so he was pretty confident of his diagnosis. He told me that there was only one cure, a BMT and he then referred me to the only hospital in Ireland that performs BMT's. Since then I have been under the care of a fabulous doctor. My Bloods seemed to stabilize and get a little better and so then in around november time I was diagnosed with idiopathic chronic neutropenia.

In July this year I got a chest infection and was put on antibiotics. A few weeks later I had my bloods done and saw a new doctor as mine was on vacation. She told me there was no doubt that I have MDS. While there was clear 'morphological features of dysplasia in my bone marrow examination, there was no excess of blast cells" however I do not know my current blast count. My cytogenetic analysis was normal.

So I am a bit confused, is there anyone out there that has had a similar experience to mine. I would sure appreciate hearing from you if you do.

Also does anyone know if it is possible to have mild anemia with my blood counts. I have felt overwhelmingly tired at times recently and not sure if was caused by the very stressed work environment I am currently in and/or by trans atlantic travel.

Thanks in advance.


Male 52, MDS, First diagnosed August 2012, then changed to idiopathic Neutropenia Nov 2012 and again diagnosed MDS July 2013, 3 Different doctors. WCC 2.3, HB 12.8, PLT 182, RCC 4.01, HCT 0.397, MCV 99, MCH 30.6, MCHC 32.5, RDW 15, NEUTA 0.7, LYMA 1.2, MONA 0.1, B12 651, Folate 9.4.

Last edited by Cornelius : Mon Aug 26, 2013 at 08:29 AM. Reason: does not seem to have included my signature
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  #2  
Old Tue Aug 27, 2013, 07:30 AM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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Hi Cornelius - I had idiopathic neutropenia for about 6 years before finally being diagnosed with MDS in Sep 2011. I had never heard of MDS until I was diagnosed subsequent to a serious chest infection like you. My Haematologist thought I had probably had MDS for about 2 years pre-diagnosis due to the level of disease. However my disease level improved dramatically with a providential drop in blast cells in early 2012 right when I was heading for a BMT.

I have pancytopenia so my path results are all lower than yours but white cells are my biggest problem - last month WCC 1.2, Neut .45, Lymph .43, ANC 460.

I have been spreadsheeting my monthly test results using Excel since January 2011, so that I can see how I am progressing over time. Most results are fairly stable except for the white cells/neuts/lymphs which so far this year have dropped around 25% on last years average. Even so I have only had a couple of infections (UTIs) in the last 2 years so I'm finding that by being very careful I can live with the MDS RCMD OK so far.

So don't be too discouraged! If you don't have blast cells you might be able to have Growth Colony Stimulating Factor (GCSF) which should help your white cell count. I often wonder why my GP didn't recommend that in the years before I was diagnosed with MDS.

It seems that far more MDS sufferers have problems with red cells and platelets than white cells so it's always interesting to find someone with a white cell focus.

I'll follow your progress with interest!
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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. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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Old Tue Aug 27, 2013, 07:13 PM
Chirley Chirley is offline
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Location: Logan City Australia
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Hi, I also had white cell problems long before any other cell lines. I too, only found out I had a problem when I got pneumonia and my white cell count was very low.

After a year or so I also developed anaemia requiring transfusions. My diagnosis at that time was cyclical neutropenia with iron deficiency anaemia. I had a number of BMBs some of which showed no iron stores and some of which showed normal iron stores. I kept being told that my MCV was high and that wasn't in keeping with iron deficiency and that they suspected MDS.

It was nt until 7 years later that my BMB finally showed unequivocal MDS. Because I required blood transfusions every two weeks, I was started on Vidaza but the MDS progressed and the blast count increased and for the first time my platelets were also effected. I started being worked up for BMT.

Fortunately (???) , I developed a neurological problem, more investigations were done and I was found to have copper deficiency. Once this deficiency was corrected the MDS went away. Whenever my copper level drops the MDS returns.

Regards

Chirley
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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 Wed Aug 28, 2013, 06:31 AM
Cheryl C Cheryl C is offline
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That was fascinating Chirley. I knew about your copper problem from reading your previous posts, but hadn't picked up that your MDS was so influenced by your copper levels. Is copper level determined by a blood test? I might request this when I see my specialist in October.
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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. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #5  
Old Wed Aug 28, 2013, 03:20 PM
Cornelius Cornelius is offline
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Join Date: Aug 2013
Location: Dublin Ireland
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Copper

Thank you Cheryl and Chirley

I appreciate your communication. The doctor who first diagnosed MDS for me and said he only got one wrong MDS diagnosis in his career told me that his wrong diagnosis was around a copper issue. So I have to assume he has that checked off when it comes to me, however I guess I should check.
It is a strange disease and hard to get a grip on where you are with it, so much uncertainty takes a while to get used to. it is certainly good to know there are others to communicate with.

Bless you both.

Neil
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Male 52, MDS, First diagnosed August 2012, then changed to idiopathic Neutropenia Nov 2012 and again diagnosed MDS July 2013, # Different doctors. WCC 2.3, HB 12.8, PLT 182, RCC 4.01, HCT 0.397, MCV 99, MCH 30.6, MCHC 32.5, RDW 15, NEUTA 0.7, LYMA 1.2, MONA 0.1, B12 651, Folate 9.4.
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  #6  
Old Wed Aug 28, 2013, 09:00 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi, yes it's a simple blood test for copper and caeruloplasmin.

My last BMB in early 2011 still showed MDS (all three cell lines) even though my peripheral counts had normalised with the copper.

My new doctor seems to think it is MDS in remission whilst on copper treatments whereas my previous doctor thought of it as reversible MDS which was cured by copper treatments.

I know that my experience helped someone else because my haematologist started checking copper levels on all his haem patients and he found a couple of other people with deficiencies as well.

The only counts which remain abnormal while on intravenous copper are my platelets which are always a little low and my lymphocytes which are always very low.

I think it's becoming recognised that copper deficiency can cause a reversible MDS and most haematologists check copper levels routinely now.

Regards

Chirley
__________________
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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  #7  
Old Thu Aug 29, 2013, 07:54 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 830
Really fascinating!
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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