You’ve just been diagnosed    -  CML -   Chronic Myeloid Leukemia

 

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 "The bad news is you do have Chronic myeloid leukemia, but the good news is if you have to pick a type of leukemia, you picked a good one to have. Now with CML, we have treatments."
Diagnosis, staging, and risk classification
"The diagnosis of CML can be done with peripheral blood. An elevated WBC count with left shift, frequently with basopilia, and an enlarged spleen is suggestive of CML. Although the presence of BCR-ABL can be confirmed with FISH or PCR for BCR-ABL, a BM aspiration and cytogenetic analysis is mandatory for proper workup. Without this, one cannot tell if there might be increased blasts or basophils that would shift the staging from chronic (CP) to accelerated (AP) or blastic (BP) phase. In addition, we would not know whether additional chromosomal abnormalities are present besides the Philadelphia chromosome (ie, clonal evolution). If cytogenetics are not done at diagnosis and later identified such changes, it is impossible to determine whether this is a new occurrence or persistence of previously present abnormalities. Thus, in all patients with suspected CML we perform a BM aspiration with differential count and cytogenetics as well as FISH and PCR at diagnosis to confirm that the fusion gene present is detectable. We give no consideration to the absolute value of the transcript levels at diagnosis, but uncommon rearrangements (eg, e13a3, e14a3, e19a2) may not be detectable by the standard PCR probes. Not having a baseline PCR on a patient with such abnormality could create confusion when a subsequent evaluation comes with undetectable transcripts. This could be interpreted as complete molecular response (CMR) when indeed it represents an inevaluable test. Probes are available that can detect these transcripts,2 but they are usually not routinely used in most commercial and academic laboratories."
For more information, see How I treat newly diagnosed chronic phase CML, by  Jorge Cortes and Hagop Kantarjian, Journal Blood, 2012

 VERY IMPORTANT​
​
In the weeks after your diagnosis, ask you doctor to give the results on paper ( Complete Blood Count (CBC), Bone Marrow Biopsy (BMB),     BCR-ABL FISH and BCR-ABL PCR ). 

Find your  CML Permanent Code  and your CML Medication Status.
The medical record of a person with CML grows overwhelming over time. It becomes very advantageous to keep the essentials on your computer or on your mobile phone. This file is first made up of a first code "CML Permanent Code" which contains:
1 - the restricted date of birth (year, month but not the day)
2 - the restricted date of diagnosis (year, month but not the day)
and then a second code 'CML Medication Status' which contains:
3 - date of a change in medication for CML (eg, change from imatinib to dasatinib ’)
4 - date of treatment change ('in TFR' or 'not in TFR').
5 - date of dose of medication change.  (eg, 300 mg  to 400 mg of bosutinib)
 You can start to record these codes in a folder in your computer.
See CML TooL BOX

Save your PCR test results with your CML PCR Status.
See Create the CML PCR Status

Adherence to the medications is necessary for the optimal treatment of CML.
See the videos about Adherence

Dont'forget to tell your doctor about food and drug interactions.
See Food and Drug Interactions  

Make a list of your side effects and inform your doctor.
See Managing Side Effects 

What you need to know about testing and monitoring in order to ensure the best treatment outcome..
See Molecular monitoring in CML 
​
CML patients should be vaccinated against pneumococcus.
Influenza vaccination is recommended in CML patients. 
Ask your doctor what is the good timing to be vaccinated in your case.
​See Vaccination of CMLers ​

To make it easier to find information on this site, practice with the CML Search Engine and then Ctrl-F.
See Search 101 for CMLers
SECONDARY INFORMATION

​                              After several years, you may consider stopping treatment with the advice of your doctor. To do this, you need two factors to make this decision: the Sokal factor and your BCR/transcript. A lot of doctors don't give theses informations. If your Sokal factor is good and your BCR/transcript is ​​e14a2, you have more chance to have a successful TFR (treatment-free remission)
​See Sokal, Hasford, and EUTOS scores
See also BCR-ABL Transcripts 


The glossaries are useful when you aren't familiar with CML terminology.​
CML Search Engine - Enter a topic (For example (imatinib, cure, "pleural effusion", "bone pain", "Stem cells from umbilical cord", "quality of life" ,children, pregnancy, password ​... )
                                         Modes of access to the website
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1 - Public access  (strongly recommended)
     On several occasions, the CML patient called CMLer will need a password  to access several modules of the website.  
                  (No registration required - Anonymous access)​
​2 - Reserved access to CMLeukemia private group
     On other occasions, the more experienced patients need more up-to-date or in-depth information. Among other upcoming modules, they will need access to the archives and also to abstracts of congresses on CML.
​                  (Member password required and registration required).