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Old Sun Dec 30, 2007, 12:22 PM
Lori C Lori C is offline
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Question Need Info About CMML

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.
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Old Sun Dec 30, 2007, 03:53 PM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Lori.

You definitely sound very knowledgeable about the details of ET. I think it's not unusual for people to have conditions like ET for a long time before there is enough evidence to see that the underlying disease is really MDS or CMML.

What does it mean to have a "double BMB"? Why are they waiting until March to do it?

As you probably already know, CMML is typically a slow-progressing type of myelodysplastic/myeloproliferative disease in which too many myelomonocytes are present in the bone marrow, crowding out other types of cells. This is consistent with your husband's monocytosis.

I think it's a very good thing that he feels well enough to keep working. His easy-going attitude should serve him well under the stress of dealing with such a complicated situation. He's lucky to have you out here for him looking for help and information.

Google searches on CMML and Chronic Myelomonocytic Leukemia will lead you to lots of information. Key sites to focus on would be the National Cancer Institute (NCI), National Heart, Lung and Blood Institute (NHLBI), and clinicaltrials.gov (for the latest in current research).

We have at least a few members who are dealing with CMML either as patients or as caregivers. Try searching Marrowforums to find related posts (click on the triangle next to the word "Search" in the toolbar at the top of the page).

Hope this helps.

Regards,
Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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  #3  
Old Sun Dec 30, 2007, 07:02 PM
Lori C Lori C is offline
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Info on CMML

Ruth,

Thank you so much for your helpful reply. A double BMB means that the dr. will do a BMB in each hip. The dr. plans to draw large samples out of both hips and get large pieces of bone with the express purpose of examining him for CMML and low grade lymphoma. One hip seems to contain non-paratrabecular lymphoid aggregates (tumors) and one hip seems to contain paratrabecular lymphoid aggregates. The reason it has been scheduled for March is because Grant is changing jobs on January 2, 2008 and we requested to wait if it was possible to give him some time at his new job before he had to take off to go do the double BMB. His dr. felt like Grant was stable enough that we could wait until March. I forgot to mention on my previous post that Grant's chromosomes are still normal, but his flow cytometry showed bright on CD5, CD7, CD20, and CD45. In the reading I've done and the discussion I've had with Grant's dr., when CMML is suspected then flow is analyzed for CD14 and CD61. Neither of these were analyzed at the time of Grant's last BMB in September, 2007. Thank you for the information and I appreciate your timely reply.

Lori C. (wife of Grant, dx ET 2004, HU and Pegasys INF, now suspected to have CMML/MDS, double BMB scheduled 3/08, still on Pegasys INF at 45mcg/month)
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