The Leukemia & Lymphoma Society - Fighting Blood Cancers
3 Replies Latest reply: Oct 7, 2012 7:54 PM by wgaccrensh1 RSS

Is anyone out there battling CMML?

jsitko Registered Users
Currently Being Moderated

I was dx with CMML in 2009. I went on Vidaza for 8 months.  My counts have been stable for well over 2 years. My brother committed suicide on May 18.  I couldn't eat or sleep for 5 weeks.  When I went for my CBC for this month, my CMML is becoming active again.  My platelets are 40 now.  My whites are 2.0  normal being above 4.  I'm truly scared.  I'll be having a Bone Marrow Biopsy on July 9.

  • Re: Is anyone out there battling CMML?
    StainedGlass Registered Users
    Currently Being Moderated

    I was dx with CMML 2 in Nov 2011. I had my spleeen removed in Feb. I've been on Hydroxyurea since April and my WBC are almost normal, however, my RBC are awfully low and I get another transfusion tomorrow (I quit counting how many I've had). When my onc reduced my dosage by 1/3 my WBC started a slow climb with no change in my RBC. It sounds like you had your CMML under control. 5 weeks shouldn't make much difference. Did ou go back to the Vidaza? Good luck with your BMB and keep us posted.

    • Re: Is anyone out there battling CMML?
      jsitko Registered Users
      Currently Being Moderated

      I went back on Vidaza last week.  I had 7 treatments and now I get 3 weeks off.  I'm hoping I have good success like I did last time.  My BMB really hurt this time.  I've had 5 others and I never minded it.  This time they used a drill.  Oh my goodness!  It was suppose to be much easier, but I didn't think so.  I will say it was quick and I had no pain at all the next day, but the pain during the procedure was awful.  I don't think the PA  that did it allowed the numbing medicine to work.  I have a pretty high tolerance for pain.  I'm dreading the next one.  After 6 rounds(months) of Vidaza, they'll repeat the BMB.  How are you doing?

      • Re: Is anyone out there battling CMML?
        wgaccrensh1 Registered Users
        Currently Being Moderated

        Hi.  I am new here and just beginning this journey.  I'm 22 years old, was diagnosed Friday with CMML-2.  I am looking for others going through this right now.  I am going back to MDA Monday to get treatment options decided.  My onco is looking into trials, says she thinks I could do better on a trial due to my age and otherwise generally good health (can handle harsher chemo/treatment than the typical CMML patient).

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