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MDS Myelodysplastic syndromes

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Old Thu Jun 1, 2017, 09:26 PM
Bossywife Bossywife is offline
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Grade 2/3 fibrosis

Does anyone know if this has any relevance to anything? They seem to discuss it a lot in my husband's reports, but I can't find anything to say if this is bad or good.
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Husband (61) dx RAEB1 Apr 2015 after long term bad CBCs (first discovered Apr 2008 after an unknown infection had him hospitalized), currently on watch & wait with monthly bloodwork. Myeloid Gene Panel testing done Aug 2017, showed nothing worrisome. CEBPA mutation
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Old Mon Jun 5, 2017, 12:42 AM
DanL DanL is offline
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Bone marrow fibrosis is not a rare finding in MDS patients and reflects marrow stress. Fibrosis simply means scarring of the bone marrow. What happens is that the reticulin fibers become more dense and less capable of producing good blood cells. Severe fibrosis indicates the presence of collagen fibers (like your nails or hair). Most MDS cases with fibrosis are grades 1-2, although it can be grade 3. The prognosis of the presence of fibrosis in MDS patients is not well defined, but generally if there is a lot of grade 3 fibrosis, it would mean that a substantially smaller portion of the marrow is capable of producing healthy blood cells. The fibrosis, in effect, crowds the marrow, which is supposed to be spongy and soft.

I was level 2 - 3 when I was transplanted in 2014, but am currently free of any notable fibrosis. From what I have read, it appears that it can be a complicating factor that may increase risk during transplant, which may include higher relapse rates - which I did experience.

Overall, I think that it is a relevant factor, but it is not the predominant concern when treating MDS, as most cases don't have the JAK-2 mutation that is present in myelofibrosis. I have seen cases where the JAK-2 mutation is present and where people are treated with anti-myelofibrosis drugs with some success. For the most part, the science indicates that in the absence of the above mutation, treatment for MDS is the proper path.

I hope that this information is helpful.
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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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Old Fri Jun 9, 2017, 10:23 AM
Bossywife Bossywife is offline
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Thank you!!
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Husband (61) dx RAEB1 Apr 2015 after long term bad CBCs (first discovered Apr 2008 after an unknown infection had him hospitalized), currently on watch & wait with monthly bloodwork. Myeloid Gene Panel testing done Aug 2017, showed nothing worrisome. CEBPA mutation
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