Nouvellement diagnostiqué LMC     
                       Leucémie myéloïde chronique

 

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 "La mauvaise nouvelle est que vous avez une leucémie myéloïde chronique, mais la bonne nouvelle est que si vous devez choisir un type de leucémie, vous en avez choisi un bon. Maintenant, avec la LMC, nous avons des traitements."
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  CMLer ID  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 "CMLer ID" 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 Treatment response in CML
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 

Les glossaires sont utiles lorsque vous n'êtes pas familier avec la terminologie CML.​
MOTEUR DE RECHERCHE LMC - Entrez un sujet 
​(Par  exemple (imatinib, asciminib,  "épanchement pleural", "douleur osseuse",          "qualité de vie" , enfant, grossesse,  "dernière nouvelle", mot de passe, "boîte à outils", célébrité, docteur, spécialiste,  Canada,  France, TFR, PCR, ASH 2022, forums, support, ... ) )
                                         Mode d'accès au site web
​
1 - Accès public  (fortement recommandé)
     À plusieurs occasions, le patient LMC appelé CMLer aura besoin d'un mot de passe pour accéder à différents modules du site web.  
                  (Pas d'enregistrement requis - Accès anonyme)​
​2 - Accès réservé au groupe privé CMLeukemia 
      À d'autres occasions, les patients plus expérimentés auront besoin d'informations plus à jour ou plus approfondies. Entre autres modules à venir, ils auront besoin d'accéder aux archives ainsi qu'aux résumés des congrès sur la LMC.
​                  (Mot de passe du membre requis et enregistrement requis).