[Lori C]

Hello, my husband, Grant, was dxd with essential thrombocythemia (an MPD) four years ago. He has always been that rare bird and had very rare things crop up that did not "fit" the dx of ET. However, because not enough weird things happened all at once the dx of ET stayed in place for four years. Now, it seems that enough evidence has presented itself that his dr. is thinking he now has CMML/MDS. A double BMB will be done in March/2008 to confirm, but his dr. is relatively sure. So, I know quite a bit about ET as I've studied it in depth for the last four years. I now need to know about CMML so if anyone could shed some light on it for me or give me links to info about it, I would be so grateful. Grant is 38 yoa, he continues to have HIGH platelets, has had monocytosis for over 30 months consistently, has been found to have a paratrabecular lymphoid aggregate (which is not the kind you want to have), and has such anomalies as psuedo Pelger-Huet anomaly, dysgranulopoiesis, cytoplasmic vacuolization, hyperlobated megakaryocytes, toxic granulation in the absence of meds, a bad reaction for 18 weeks to Pegasys INF that caused MASSIVE hives and his breathing to become impaired, several ER visits and scary times of injecting Epi pens before it finally was discovered he had received a bad batch of the Pegasys INF, had EDTA platelet clumping, high WBC's occasionally, metamyeloctyes and bands are low in his BMB's, spleen and liver are enlarged, and fibrosis is graded at 2+. Other than all that, he says he feels pretty good except that he is tired all the time. He continues to work because that makes him feel like he's not sick so to each his own, I guess. I have pretty much taken the lead in finding out all there is to know about his illness/es. I do not always share everything I know because I think it would be detrimental to his spirit to hear it and I want him to fight. He's a very happy contented man and very laid back in his attitude towards everything, including this. I am very lucky to have him, and would be devastated to lose him. So, that being said, I am a huge fighter and determined that I will leave no stone unturned in order to help him fight this disease. He is more stable than some and I give eternal thanks for that and know that we are blessed that this seems to be moving slowly. Any info would be greatly appreciated. Thanks so much in advance for any help that you might can share.