The Leukemia & Lymphoma Society - Fighting Blood Cancers
4 Replies Latest reply: Aug 25, 2011 3:46 PM by vran37 RSS

My dad has been diagnosed with CMML

Tomas_s Registered Users
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Hi my father has been diagnosed with CMML about ten months ago. He has just had his chemo and trial stopped because the trials team and consultant did nt think it was helping. Without any other offers of treatment my dad has been told he will only receive supportive care from now on. He has an enlarged spleen and liver and is in a lot of pain all the time I really want to find people out there who have expereice of this type of leaukemia and might be able to shed some more light on possible treatments. He has been told he is too old for a stem cell transplant but we are preparedto go private if needs be. I have read information that says older people can have a lessened version of a transplant. Feeling very lost and hoping for answers ? Does anyone have any information on this subject ?

Sallie

  • Re: My dad has been diagnosed with CMML
    SarahWe Registered Users
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    Hi Sallie,

     

    My dad also was diagnosed with CMML.  He was diagnosed last month.  He was hospitalized for pain because of his enlarged spleen.  His white cell count was 60,000 in the hospital.  A week after he was released from the hospital he had his first round of chemo.  His chemo drug is Dacogen.  He was on the chemo drug for 3 days and his white count was cut in half.  We just met with the bone marrow transplant doctor.  He recommends that my dad, who is 65, get a stem cell transplant.  In telling us about this procedure he did mention some easier forms of this procedure for the older patients.  I apologize that I don't know all the ins and outs of this.  I will take a look at the paper work that was given to us and see if I can come up with some names of drugs that they use for these older patients.  I have to tell you that this chemo drug Dacogen has been great for my dad.  He had very few side effects.  The worst is the fatigue but he was able to go for a 30 minute walk everyday.  He had no nausea and vomiting or hair loss.  It made a huge difference on the size of his spleen. His numbers came all the way down.  His monocytes are still high but he starts his second round on Monday so hopefully they will come down all the way.  I really hope some of this info helps you.  This is a very hard thing we are going through and it's made worse because of how rare this diagnosis is.  I hope the best for your father and your family.  I will get back to you with some more info on the stem cell transplant.

     

    Sarah

    • Re: My dad has been diagnosed with CMML
      Tomas_s Registered Users
      Currently Being Moderated

      Hi Sarah

      Thanks very much for getting back to me its so good to speak to someone in similar circumstances to myself. Im really glad to hear that the chemo is going well for your dad. I have passed on the name of the drug that your dad is responding well to. Its really interesting to hear that your dad has been in consultations about a stem cell transplant. Its given me a little hope that there will be something else they can do for my dad as well. Any further information you have would be much appreciated as my dad has not been offered any alternative treaments and we want to explore every possibility. Really appreciate you taking the time to respond to my message.

      Sallie

       

      Date: Thu, 4 Nov 2010 00:05:36 -0400

      From: communityreply@lls.org

      To: salliet1979@hotmail.co.uk

      Subject: Re: My dad has been diagnosed with CMML New message: "My dad has been diagnosed with CMML" Re: My dad has been diagnosed with CMML

       

      sallie tomaszewski,

       

      A new message was posted in the thread "My dad has been diagnosed with CMML":

       

      http://community.lls.org/message/77005#77005

       

      Author : SarahWe

      Profile : http://community.lls.org/people/SarahWe

       

      Message:

       

      • Re: My dad has been diagnosed with CMML
        sonia Registered Users
        Currently Being Moderated

        My moms spleen was enlarged and pushing up on the ribs and very uncomfortable.

         

        Her platelets were 15 and as low as 1 and she needed a transfusion which did not help.  They disappeared after two days.

         

        We finally opted to remove the spleen which was the best thing she could have done.

         

        It was very large and could have bled out.

         

        She cannot have a BMT and is not being given chemo either.

         

        The spleen should be removed if it gets too large and platelets are very low.

         

        Good Luck.

  • Re: My dad has been diagnosed with CMML
    vran37 Registered Users
    Currently Being Moderated

    Hi Sallie,

     

    I found a few studies that have been done on potential treatment options for CMML. I posted the link to a website that will give you list to all the studies, but I will pick out a couple that I think could be useful to you.

     

    The first study is about a drug called Azacitidine and was conducted at the Western Pennsylvania Hospital. Researchers found that Azacitidine produced a significant survival advantage in patients who responded to the treatment. Also, the toxicity associated with the drug is acceptable with side effects such as a skin rash being reported.

     

    The second study is about a drug called Decitabine, and according to chemocare, it is a chemotherapy drug. Do you know if it was part of your father’s chemotherapy regimen? According to the study that was conducted at the University of Texas M.D. Anderson Cancer Center, researchers found that Decitabine invoked a complete response (CR) in more than half of their patients and severe side effects were rare. Overall, Decitabine was active in treating patients with CMML. Also, different combinations with Decitabine have been tested.

     

    https://www.medify.com/insights/article/21656746?utm_source=llsorg&utm_medium=forums&utm_campaign=intlgst-v1 (Study on Azacitidine)

     

    https://www.medify.com/insights/article/17219444?utm_source=llsorg&utm_medium=forums&utm_campaign=intlgst-v1 (Study on Decitabine)

     

    http://www.chemocare.com/bio/decitabine.asp (Information on Decitabine)

     

    https://www.medify.com/insights/search?condition=Chronic%20Myelomonocytic%20Leukemia&utm_source=llsorg&utm_medium=forums&utm_campaign=intlgst-v1  (List of all Studies Done on the Different Treatment Options for CMML)

     

    Please let me know if I can help you find some more information, I would be happy to help!

     

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