Beth was crying last night when I got home

She woke up yesterday with a new pain in her spleen. An enlarged spleen is one of the symptoms of CMML (chronic myelomonocytic leukemia). This Detailed Guide to CMML by the American Cancer Society is one of the best that I’ve found, and it gives a fairly complete overview of this disease. I’ve also found this 2005 summary from the National Institutes of Health (NIH) : “Intensive chemotherapy alone is of little benefit, and stem cell transplantation is the only curative modality in the small number of eligible patients, although outcome remains suboptimal.”

That doesn’t strike me as too hopeful, though it is easy simply to be bewildered by this disease. As medical science has learned more and more about it through DNA, it has been found to be more rare than at first thought. Originally, Beth was diagnosed with MDS (a pre-leukemia with certain tell-tale signs), but after a second biopsy, her diagnosis was changed to CMML (more specifically dysplastic CMML-2).

One thing that you don’t see much of is the prognosis for CMML patients who undergo a Bone Marrow Transplant (BMT). That’s because the population of these patients is so small. There are only about 1,100 cases diagnosed each year — and 90% of them in people over 60 who can’t have the BMT.

I’ve also found this overview in the France-based Atlas of Genetics and Cytogenetics in Oncology and Haematology :

The median survival for patients with CMML is about 24 months. … Of adult patients who underwent allogeneic bone marrow transplantation the disease-free survival was 39% at 3 years.

But this disease is so rare, the population upon which this study was based is very very small. I believe it is only in the 10s of patients. (They didn’t even study “hundreds” of CMML patients with CMML).

An oncology textbook notes that:

Median survival in CMML is approximately 12 months, with a range from approximately 1 to more than 60 months. …Unfortunately, at this time, unless the patient is a candidate for imatinib therapy or stem cell transplantation, long-term salutary therapeutic effects are uncommon.

But even for those who receive a stem cell or bone marrow transplant, the NIH says:

Allogeneic hematopoietic SCT (HST) offers the only curative potential for patients with chronic myelomonocytic leukemia (CMML). However, there is a paucity of data addressing this approach in CMML. The disease is a relatively under-represented myelodysplastic (MDS)/myeloproliferative subtype among transplant eligible patients. Non-randomized studies suggest that long-term remissions are achievable when using myeloablative or reduced intensity conditioning transplantation. Allogeneic SCT for CMML is often reported as part of MDS registry data. The largest series in adult patients reported a disappointing long-term relapse-free survival (RFS) of 18%. The Fred Hutchinson Cancer and Research Center group reported a 40% long-term RFS for a mixed group of adults and children with CMML who were transplanted over two decades. In this study, we performed a literature search and reviewed available data for adult CMML patients undergoing HST. The dearth of data that span two decades with changing transplant practices prohibited us from performing a formal meta-analysis. However, we elected to present the current status of HST in adult CMML patients. Carefully selected CMML patients may have the most benefit from this curative approach.

Really, this seems to be all that’s available out there.

4 thoughts on “Beth was crying last night when I got home

  1. Pingback: Recent Blood Counts « John Bugay, an integrated life

  2. Pingback: How we got here, Part 1 « John Bugay, an integrated life

  3. I know it’s one year later….I hope Beth is doing well. I was just diagnosed with CMML. Can you offer any more info on this disease? I thank you for your time.

  4. Hi Marion … Beth was doing fine following her bone marrow transplant. Are you a candidate for that type of treatment? It had completely cured her CMML. Unfortunately, she just recently passed way from a heart attack. But that was related to other things.

    Can you tell me a bit about the course of treatment that is being proposed for you?

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