November 22, 2018 at 7:40 pm #44511
I have low counts and had a bone marrow biopsy in April of 2017 and it did not show full MDS but that it was likely evolving into it. As my counts went lower and because I had 4 mutations, ASXL1, TET2, RUNX1 and SRSF2, my doctor said it is MDS. When my platelets get to 50,000 I was going to start Dacogen or Vidaza. Now I am at 52,000 and expected to start treatment in Jan. My doctor offered me to see another doc, same facility, who is supposed to be very highly specialized in MDS to see if I quality for clinical trials, so I did. He did a lot of extra blood work and I will have another BMB next week. Meanwhile, he explained that I cannot have the diagnosis of MDS unless is shows 1)10% dysplasia, 2) blasts from 5-19% (he explained that 1-4% can be normal, 5-19 MDS and above 20% AML) and 3) abnormal cytogenetics. I am missing the 10% dysplasia and only have 4% blasts. He said that is Clonal Cytopenia of Undetermined Significance. His treatment is cut and dry: if not full MDS by bone marrow biopsy, watch and wait; If yes but low or intermediate I, either watch or support; If Intermediate 2 or High risk, Dacogen or Vidaza. Anyone else told CCUS? They are colleagues at a well known Center of Excellence. We’ll see what my results are and go from there. I would be interested to hear what others think of all this.
DonnaNovember 23, 2018 at 8:27 am #44514
I believe that you need only one of the items you list in addition to Cytopenia to be classified with MDS. Seems you don’t hit any of the 3 items therefore CCUS. Maybe the new bone marrow will reveal more.
I am classed mds with very low anc, I have low blasts(1%), no cytogenetic abnormalities, but do have dysplasia (trilineage) >10%. I was diagnosed in June 2016 and have been on watch and wait since. I have 3 mutations AXSL1, SFRS2 and IDH1.
My first BMB indicated 6% blasts but second opinion bmb at a Center of Excellence with a mds expert indicated 1% blasts. 3 subsequent bmb’s at Center of Excellence show no progression but genetic tests indicate increase in the vat of all 3 mutations.
I get blood draws every 6 weeks and results are stable but anc is nearly always less than 500. Most recent anc 164. I feel well and have not suffered from major infection, but do get skin infections that I am dutiful with.
I’ve learned to have unquestioned trust in my mds expert. The first result and read placed me in intermediate 1 headed for Vidal a but second opinion halted that course and I’ve avoided treatment for 2.5 years.
Good luck with the bmb.December 2, 2018 at 9:51 pm #44609
Thanks for your response. See, my first MD at a Center of Excellence did call it MDS based on the mutations and the cytopenias (WBC, RBC, platelets). The new doctor I saw in consult says you must have all 3 things I mentioned above. Differences in opinions I guess. Anyway, I had more blood work and my platelets are now at 43,000 (down 9,000 in 2 weeks) and I don’t have the results yet from the bone marrow biopsy I had last Monday and the additional blood work regarding mutations. I’ll have to wait and see what the plan is dependent upon the results. I’m amazed about your blasts going from 6% to 1%. I didn’t know they went down unless you were being treated. It’s all so interesting if only we were not talking about our own bodies. I mean the science part is interesting. I am a nurse but never worked in this field, so I really don’t know a lot about it but find it interesting. I have been followed for at least 4 years, but the MDS talk just started in 2017. Well, I wish you well and hope you can avoid treatment for a long time. Me too.
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