Hi Becca, John, Ruth and welcome AllGoodWays,
Thank you all for the interesting posts and links. For starters I’ve printed out the “Management of Myelofibrosis” article. I hope I can make some sense of it - a rusty 1971 background in biochem doesn’t get you much in 2012.
I just wanted to comment on what the nurse said to Becca about dropping blood counts. I really wish people would say nothing rather than saying silly things like that. My (former) hematologist made a similar remark when my platelets dropped back into the normal range. It was not, unfortunately, a sign that I was ‘getting better’. I also empathize with a remark made a few posts back about people thinking one isn’t sick because one doesn’t ‘look’ sick. I think most of us try to keep our morale and appearance up by remaining cheerful, taking care of our minds and bodies, eating well, getting fresh air and exercise and by having nice things to look forward to. I have lunch once a week with two former colleagues who are also seriously ill. Occasionally other former colleagues join us. They expect to find a grim, pale and morose bunch and seem surprised, even disappointed, to discover that we’re actually quite lively, cheerful and life-like. None of us ‘looks’ sick.
On your blood results, Becca, do you know what MID stands for? And does anyone know what the ‘normal’ range for granulocytes is? I apologize if that question was answered in a previous post. My results say ‘immature granulocytes 2.3’, is that the same thing?
I was diagnosed with myelofibrosis in October 2010 (after an initial wrong diagnosis of myelodysplastic syndrome or MDS with a 2 year prognosis in March 2010). Since Feb. 2011 I’ve been taking part in a clinical trial for the JAK2 inhibitor drug CYT387. It’s the only treatment, other than transfusions, I’ve ever had for my myelofibrosis. I don’t have the JAK2 mutation but oddly the drug seems to work for me. Impossible of course to say for sure, since there’s no control/placebo ‘me’ out there for comparison, but overall my blood results, though they go up and down, and sometimes by quite a lot from one appointment to the next, do not appear to have worsened in the past year. Yesterday my platelets were 133. The previous low was 137 in August 2011 but they were back up to 187 in April 2012 so there’s a certain amount of play in there. I am still transfusion dependent – 18 units so far - but require transfusions less often, once every 6 or 8 weeks instead of once every 4 weeks. My HGL was 87 yesterday. I get transfusions when it drops below 80.
Does anyone else get all kinds of little and big viral/bacterial infections? In the past two and a half years I’ve had cytomegalovirus (CMV), shingles, eye infections, multiple colds and other odd infections, and most recently, pneumonia (despite a vaccination). And I used to have a really good immune system. My WBC are still in the normal range but the individual types of WBC seem to be either too high (monocytes, basophils) or too low (lymphocytes).
From the posts it appears that although we have the same disease, it manifests itself differently and our treatments are different. I think we also live in different parts of the world. That makes comparisons quite tricky. Mine also started with high platelets but I was also told that doesn’t mean that I had ET that developed into MF.
Thank you to all. This forum is really helpful.
Cal