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Low WBC, Low Platelets, Low RBC, Large cells - is it always Leukemia?
Blood Cancers & Disorders | Last Active: Sep 23 6:01pm | Replies (94)Comment receiving replies
Well, after switching hospitals for a 2nd opinion. The 2nd hematologist took a baseline CBC using their lab and suggested 4-more weeks of weekly b12 injections followed by an office visit and CBC. He was skeptical of the 1st diagnosis of MDS.
The new baseline was WBC-1.6, Neutrophil-.7, MCV-99, Platelets-85, normal red blood cells.
Today I went for the 4-week follow up visit and CBC (this is now based on a total of 9 weekly b12 injections).
All the numbers remained the same. The WBC went from 1.6 to 1.7
He is suggesting a b12 injection every other week, and in 6-weeks a 2nd bone marrow biopsy. He says he does not have a diagnosis as of yet.
I'm kind of confused, if I'm not responding to 9 weekly b12 injections, then doesn't it have to be MDS?
Replies to "Well, after switching hospitals for a 2nd opinion. The 2nd hematologist took a baseline CBC using..."
@asarnesejr I am curious whether you asked the Dr about the lack of response to the B12 injections? Also, with the mutation (ddrx1) noted in the pathology report, did he comment on that? @sherbs gave you some excellent advice about Mayo. If it were me, I think I would follow her advice. At least you will have a decision you can move forward with.
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Again, I'm no physician.
It could very likely be MDS. Your numbers are similar to mine - low overall WBC, low neutrophils, low platelets, normal RBC & hemoglobin. If it weren't for routine bloodwork, I wouldn't know I have MDS. From what I've read, this is fairly typical of DDX41 driven MDS.
You can continue to work with your physician and I'm happy to see that they are exploring other angles. That's great! My physicians did the same but very quickly ruled out other causes after the bone marrow biopsy (I had 7% blasts on my first biopsy).
If you do truly have a DDX41 mutation, set up something with Mayo in parallel with what you are doing and let your physician know that he will be collaborating with them.