I have CMML - which I understand is pretty rare. My lovely specialist says I have probably had it for many years and it only came to light after blood tests for an operation seven years ago.
I've known for a couple of years, but I only looked it up on the internet this evening. Pretty depressing, so I wish I hadn't looked!
I have no real symptoms, apart from feeling pretty weak sometimes - physically, not mentally! Is there anyone else out there with CMML?
Hi Kate
I don't have it (I have CML) but my mother has CMML. I don't know your age but it's rare in younger people - my mother is 76 and I gather it is not that rare above the age of 70. From what I know there are several different types and how things go depends to a large extent on the type. It's generally a less well defined condition than CML as I understand it. Indeed, I believe as a condition it has been reclassified several times, or rather as it is really several different conditions some of those have been reclassified. Strictly what my mother has is "Myelodysplastic syndrome type CMML". Whatever it is, her platelets are reduced and her monocytes slightly raised.
What I can tell you is My mum has been living with it for about 6 years now. Her bloods seem to have settled at a steady place with one count fairly well below normal but no longer decreasing, so it looks pretty indolent at least for now. I gather that can happen, which is why there is so much watching and waiting with it - and probably why your specialist indicated you've had it for a while. And why you have few symptoms - my mother is the same.
Good luck with it - I was somewhat concerned about my mother at first but as time has gone on she and we have learned to live with it.
Richard
I am not sure where you are being treated but I hope it is at a specialist haematology centre?
CMML is a myeloproliferative disorder see list below. First of all it seems that a small number of patients with MPD's have a rearrangement of the platelet derived growth factor receptor - PDGFR- for CMML this is PDGFRb through TEL-PDGFRb
CMML patients with this particular rearrangement responded to treatment with imatinib.... see published articles below.
The MPDs - include
chronic myelomonocytic leukemia (CMML),
systemic mast cell disease (SMCD),
polycythemia vera (PV),
essential thrombocythemia (ET),
chronic eosinophilic leukemia (CEL),
primary myelofibrosis (PMF)......
However the list now excludes CML because of the importance of the BCR-ABL translocation for diagnosis and treatment with imatinib and other TKI's.
I suggest as a first step you might register for the online forum at
http://www.mpninfo.org/register.html
MPN-NET/MPN Education Foundation:
www.mpninfo.org
MPD's are classified as MPN's -MyeloProliferative Neoplasms.
I have done some very brief searches re: CMML and current therapy and it seems that stem cell transplant is recommended in those who are eligible (i.e age plus fitness level and whether you can locate a donor)-
However, there are some published articles that show CMML with the particular rearrangement outlined above- or with the
ETV6-PDGFRB fusion gene do respond to imatinib (Glivec).
I have copied some snippets and links from the articles...
I hope this is of some help.
Best wishes,
Sandy
"Some "empiric use of imatinib in CEL and CMML led to significant clinical benefit and the discovery of the role of rearrangements of the platelet derived growth factor receptor - ...
PDGFRb (beta)........for CMML."
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http://www.ncbi.nlm.nih.gov/pubmed/12181402
Response to imatinib mesylate in patients with chronic myeloproliferative diseases with rearrangements of the platelet-derived growth factor receptor beta.
Apperley JF, Gardembas M, Melo JV, Russell-Jones R, Bain BJ, Baxter EJ, Chase A, Chessells JM, Colombat M, Dearden CE, Dimitrijevic S, Mahon FX, Marin D, Nikolova Z, Olavarria E, Silberman S, Schultheis B, Cross NC, Goldman JM.
Department of Haematology, Faculty of Medicine, Imperial College, Hammersmith Hospital, London, United Kingdom. j.apperley@ic.ac.uk
Abstract
BACKGROUND:
A small proportion of patients with chronic myeloproliferative diseases have constitutive activation of the gene for platelet-derived growth factor receptor beta (PDGFRB), which encodes a receptor tyrosine kinase.
The gene is located on chromosome 5q33, and the activation is usually caused by a t(5;12)(q33;p13) translocation associated with an ETV6-PDGFRB fusion gene.
METHODS:
We treated four patients who had chronic myeloproliferative diseases and chromosomal translocations involving 5q33 with imatinib mesylate (400 mg daily). Three of the four patients presented with leukocytosis and eosinophilia; their leukemia cells carried the ETV6-PDGFRB fusion gene. The fourth patient had leukocytosis, eosinophilia, and a t(5;12) translocation involving PDGFRB ....
CONCLUSIONS:
Imatinib mesylate induces durable responses in patients with chronic myeloproliferative diseases associated with activation of PDGFRB.
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Durable responses to imatinib in patients with PDGFRB fusion gene-positive and BCR-ABL-negative chronic myeloproliferative disorders.
David M, Cross NC, Burgstaller S, Chase A, Curtis C, Dang R, Gardembas M, Goldman JM, Grand F, Hughes G, Huguet F, Lavender L, McArthur GA, Mahon FX, Massimini G, Melo J, Rousselot P, Russell-Jones RJ, Seymour JF, Smith G, Stark A, Waghorn K, Nikolova Z, Apperley JF.
Source
Department of Haematology, University of Pecs, Pecs, Hungary.
Abstract
Fusion genes derived from the platelet-derived growth factor receptor beta (PDGFRB) or alpha (PDGFRA) play an important role in the pathogenesis of BCR-ABL-negative chronic myeloproliferative disorders (CMPDs).
There will be a clinical trial in Canada for CMML.
‘’He and oncologist Dr. Caroline Hamm of Windsor Regional Hospital are submitting their application to Health Canada for approval of a Stage 1 clinical trial to determine just what dose of dandelion root extract is tolerable and effective in patients with an aggressive form of leukemia known as chronic myelomonocyctic leukemia (CMML) as well as other cancers, including pancreatic cancer and melanoma.’’
Read more: http://www.windsorstar.com/news/Hopes+high+dandelion+root+trials+Windsor...
Other link: http://www.cmleukemia.com/can-dandelions-kill-cancer.html
http://www.cmleukemia.com/myeloproliferative-disorders-mpd.html
My wife was diagnosed with CML eight years and one week ago (the date is ingrained in my memory) and has been taking Gleevec for almost all of that time with what seem to be the inevitable side efects from time to time. The CML remains controlled by the drug and she is getting on with her life. About 10 months ago, we were shocked to learn that our 3 year old granddaughter had been diagnosed with CMML. Her parents were told that no cure was available using chemo or other drugs and that her only hope was a bone marrow transplant. In the meantime, there was a risk of the condition becoming acute. There was no suitable match within the family but an unrelated donor was found in Germany. The first transplant took place last December but unfortunately failed in March. Following recovery from a very serious respiratory infection, she recieved a second transplant a week ago.
We were told that CMML usually appears in older adults and is a very rare childhood leukaemia, totally unconnected to CML but reading Richard's post, I begin to wonder...
Incidently, the first consultant called it CMML but the transplant team call it JML (juvenile myelomonocytic leukaemia).
Simon
