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MDS Myelodysplastic syndromes

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  #1  
Old Thu Oct 30, 2014, 06:21 PM
rebekahtmiller rebekahtmiller is offline
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Possible MDS

Hello-
New to the forums here. Hoping for some advice. Low WBC and Platelets were discovered by my dermatologist, as I was getting ready to start methotrexate for my psoriasis. Referred to a hematologist/oncologist, and after a lot of texts and a BMB, I decided to go to Dana Farber in Boston, who thinks its Myleodysplasia. After over a year of being low, my WBC is now at 5, despite no treatment. Does that happen?
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Old Thu Oct 30, 2014, 09:11 PM
Cheryl C Cheryl C is offline
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I believe that spontaneous improvement can happen - it would need to be tracked over a few months though I think.

In my own experience, while my white cells don't ever jump into normal range, they do jump occasionally from their normal 1.5 or so up to 2.5 or a bit higher occasionally. Often it's when I have recently had an infection. Is that the case with you?

Are your platelets still low or have they improved too? Mine were around 90-120k a couple of years ago and this year they've been around 130-140k. Not sure why.
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Fri Oct 31, 2014, 06:02 AM
rebekahtmiller rebekahtmiller is offline
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My Platelets did go up just a bit, but still out of normal range.
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Old Sat Nov 1, 2014, 04:15 PM
Caregive Caregive is offline
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Rebeka, interesting on the psoriasis. My husband has that and the psoriatic arthritis, both since childhood. Both are autoimmune disorders and play into having a problem like MDS. I do read medical articles but can't spit them back out to you but have read about autoimmune issues which MDS may be too. Do keep right on reading as much as you can and then go relax. And do post here. Good luck to you in getting good medical care. Eat well and all that.
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Old Wed Nov 5, 2014, 08:16 PM
Barbara K Barbara K is offline
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Just chiming in here to note that my husband has mildly low platelets (frequently noted as large and sometimes even "giant"), moderate neutropenia (usually plus mildly low lymphocytes), and just barely below normal RBC counts--and he also has mild psoriasis, mild osteoarthritis, and hypogammaglobulenemia (sp?--I can never get it right!). His father has psoriasis and his mother has arthritis. His counts don't seem to vary a whole lot. His RBC went up from where it was at diagnosis due to iron supplementation; his neutrophil count used to pop up above 1000 occasionally but doesn't anymore. Or else he hasn't happened to go in for a test on a day that it did. Something autoimmune seems to be going on. One thing I'm noticing is that he never used to get headaches but now gets them regularly, and they'll last sometimes for a couple of days. Not sure what to make of that . . . .

So hang in there. Maybe over time you'll get a clearer sense of whether or how the dots connect. I'll keep my eyes peeled for any news you report.
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Old Thu Nov 6, 2014, 01:38 AM
Cheryl C Cheryl C is offline
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Hi Barbara - does your husband get the headaches after having gamma globulin for his hypogammaglobulinaemia? I only get a slight headache sometimes the next day but have often been asked by the medical staff who administer IgG whether I suffer headaches as it's a common side effect.
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Fri Nov 7, 2014, 08:01 PM
Barbara K Barbara K is offline
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Hi, Cheryl. Thanks for the tip. But, no, he's not even getting the infusions, so that can't be it. They have that option listed on his treatment plan for in case he requests it or they think it's too risky not to treat him, but right now it is still all watch and wait and he hasn't wanted treatment. He's had a fair number of respiratory infections, a sinus infection that resulted one time in a wildly swollen eye, a boil on his face, etc. But nothing that he didn't eventually manage to fight off. There is pretty much always the toxic granulation, vacuolated neutrophils, and sometimes Dohle bodies in his blood work. So maybe the headaches are related to that--some kind of inflammatory or infectious process? He definitely complains of fatigue, also, and that doesn't seem explainable by anemia since his RBC counts are near normal (though I guess maybe his body is working really hard to keep them that high). Oh--but the other thing is that I guess it is not always even hypogammaglobulinaemia since at last check his Igm was more than three times normal. It was the Igg and Iga that were low. And the various alpha, beta, gamma proportions were out of whack--some low, some high.

I'll still keep that note tucked away in my head about the infusions causing headaches. Maybe just having out-of-whack immunoglobulins can contribute to headaches in some fashion--with or without the infusions? It's definitely had an impact. He used to would never, ever take medication if he could avoid it, but he pops Advil pretty regularly these days.

Hope all is well w/ you. We're good.
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