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MDS Myelodysplastic syndromes

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  #1  
Old Tue Jul 26, 2016, 03:03 PM
Zigo1980 Zigo1980 is offline
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Bone marrow mistake?

Hello
I am 30 year old diagnosed wih mds a month ago following unexplained neutropenia. I went through bone marrow and the biopsy found q20del which "crowned" me officially with mds.

On July 7th i recieved neupogen to increase my neutrophils. All blood tests since were perfect! Last test yesterday was netrophils 2.8
Hemoglobin 14.4 and all the rest well.

My question: possible they misdiagnosed me with mds? Possible to be healthy with q20del?. Haveyou heard of something like it? Thanks
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  #2  
Old Tue Jul 26, 2016, 03:54 PM
Neil Cuadra Neil Cuadra is offline
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Zigo1980,

There are other possible causes for neutropenia, so it's possible that you don't have MDS. But by definition, MDS is the combination of faulty cells in the bone marrow and low cell counts in the circulating blood, with the faulty cells the presumed cause of the low blood counts. If no other cause is found for your low neutrophil count then MDS may be the diagnosis by the process of elimination.

If it's MDS, it's on the lower end of the MDS risk scale. The del(20q) abnormality, when no other chromosome problems are found, is known to be associated with lower-risk MDS, as are del(5q) and del(12p).

I'm glad Neupogen is working for you.

Do you know what blast count (immature white blood cell count) they measured during your bone marrow biopsy? If it's less than 5% then that's good news. If it's over 5% then your doctor may decide that it confirms the MDS diagnosis.
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  #3  
Old Mon Aug 1, 2016, 03:31 AM
DanL DanL is offline
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zigo1980,

An MDS diagnosis at age 30 is pretty rare - I was 36 at the time, which is highly unusual as well, especially if you have not been treated for any prior cancers. The average age of diagnosis is close to 70 years old here in the US, but that does not mean that a few of us will be unlucky.

Abnormal (dysplastic) blood cells, especially ones with cytogenetic abnormalities like the del20q normally confirms it, but even then if it is only one or two cells out of the cells analyzed, there is a possibility that there may be some other cause, or that you may have a just emerging case of MDS.

I would say that it is definitely a good time for regular monitoring and possibly a second opinion. Some people are diagnosed with MDS and live with it with minimal or no treatment for many years, whereas others have more aggressive cases, so it is definitely something to keep an eye on. Low white blood counts as you probably know can lead to more infections/illnesses and some that are harder to cure than they normally would be, so additional precautions with cuts and illnesses would almost always be advised as a starting point.

Good luck with your diagnosis and treatment as needed.

Dan.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #4  
Old Mon Aug 1, 2016, 12:19 PM
Smarti54 Smarti54 is offline
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I was diagnosed with MDS at age 34 and the diagnosis went back and forth between it and ITP for 6 months because I had slight anemia (12/36) and dropping platelets (200 down to 90). My original BMB showed mild dysplasia but a year later a del13q (12-14). Let them watch and wait as long as possible. Some people with MDS that are diagnosed young don't have a lot of symptoms and a del20 has good prognostic outcomes. I will hope and pray that is the case with you. Best of luck!
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Sunny age 36 diagnosed Jan 2014 with low grade MDS. Recurrent infections: GI, pyelonephritis and sepsis, then lower GI bleed. PoT syndrome January 2015. WBC 4, RBC 2.6, Hgb 9 Hct 27 platelets 62 MCV 107. Watch and wait. 11/15 BMB showed del(13)(q12-q14)
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