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bobspez's Recent CancerCompass Activity

  • bobspez has replied to a post on the message board

    Hi Ed. Happy to hear you're doing so well. I'm still on watch and wait since Sep. 2016. Stll have permanent afib. Going to be 72 next month. Only symptoms have been loss of strength and fatigue, but who knows whether it's the CMML or the congestive heart failure. Some days I feel almost normal and others I am wiped out. My cmml has above normal WBC, neutrophils, monos and platelets. Hgb and RBC are normal. Everything...

    August 23 at 4:57 PM view post
    • bobspez has replied to a post on the message board

      That's great progress Ed. How old are you?

      August 23 at 4:24 PM view post
      • bobspez has replied to a post on the message board

        Sorry you are going through this. You are on the wrong forum. CML, which you have is not the same as CMML (Chronic Myelomonocytic Leukemia) which is a different disease. The Cancer Compas CML Discussion Group is here at this link: https://cancercompass.com/message-board/cancers/leukemia/leukemia-(cml)/1,0,119,7,52.htm Good luck.

        March 24 at 4:56 PM view post
        • bobspez has replied to a post on the message board

          Ed, From https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3193268/ "Recurrent reciprocal translocations, involving PDGFRA and PDGFRB, are rare in CMML; if present, they indicate that myeloblast/monocyte proliferation can be mediated by activation of phospho-tyrosine kinase pathways." [i.e. Gleevac].  From https://www.lls.org/sites/default/files/file_assets/FS17_CMML_JMML_FactSheet.pdf "Abou...

          March 16 at 5:47 PM view post
          • bobspez has replied to a post on the message board

            Marley 8, first I'd like to say that many people who have posted here have joined the private facebook group called CMML FRIENDS That group has much more traffic and posts than this forum does, so it's worthwhile joining to get a larger number of responses. I also have CMML and am 71 and have been on watch and wait since Sept., 2016.  CMML presents very differently for different patients. As far as the docto...

            February 14 at 11:20 PM view post
            • bobspez has replied to a post on the message board

              Ed, it sounds like you are doing well. From what I have read liver GHVD is frequent after transplant. It sounds like yours is mild at present. Hope the ursodiol works to get your numbers down.

              January 29 at 9:51 PM view post
              • bobspez has replied to a post on the message board

                Congratulations Ed. That's great news. Thanks for posting.

                November 07, 2017 view post
                • bobspez has replied to a post on the message board

                  If you are on Facebook there is a private group called CMML FRIENDS that has over a hundred members (poeple who are diagnosed with CMML or their care givers). Some of the people who used to post here are in that group now. There's usually numerous member posts every day.

                  September 19, 2017 view post
                  • bobspez has replied to a post on the message board

                    I was in a similar position several years ago. In 2013 my monocytes were above normal and in 2014 were above 1.0. Both my urologist and my cardiologist said it was nothing to be concerned with because my other blood counts were all normal. My GP was advising me to see a hematologist for possible leukemia but I didn't until 2016 when I was hospitalized with afib and pleural effusions. At that time my bone marrow biops...

                    July 05, 2017 view post
                    • bobspez has replied to a post on the message board

                      I believe Vidaza can be given in IV form, either with keping the line in the hand or arm for several days, or with a permanent port or pic line that is inserted under anesthesia. I don't have personal experience with it. I did receive 8 weekly infusions of another chemo and just let them insert a line each time. When I was in hospital, they changed my IV line about once a week.

                      May 02, 2017 view post
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