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Curious if anyone has come across this...

Hello all, my mom was diagnosed with CML on April 22, 2010. I know we havent hit the one year mark just yet, but everything has been going well her white blood cell counts were coming down the percentage of the leukemic cells dropped and then yesturday I get a call from the doctor stating that there was good and bad news but that her white blood cell count had become normal but the leukemic  cells have increased to more than when she was diagnosed. I am looking to see if anyone can relate to shed some light. Appreciate any comments/answers.

 

Thanks,

Tenny

Hi Tenny,

first I would like to welcome to this forum. I assume you are based in the US and that your mother is treated there?

If so as a first step I suggest that you take a look at the National CML Society website.

 

http://www.nationalcmlsociety.org/

The National CML Society provides a good service to citizens currently living in the US and we work with them in a mutually cooperative relationship. 

 

If your mum is not being treated by a CML expert clinician, then a first step might be to ask one of the clinicians on the NCMLS website reached by the link below. 

 

They have a panel of CML expert clinicians who are currently fielding questions from patients.... see link below.

http://www.nationalcmlsociety.org/ask-experts/meet-our-panel

This might be helpful to you.

and you can find a local support group through the website by clicking on the link below. 

http://www.nationalcmlsociety.org/what-we-do/cml-connection

 

I would also suggest  that you contact Greg Stephens asap  info@nationalcmlsociety.org

 

To answer your specific question, the length of time from your mum's diagnosis, April 2010? is  around 18 months- (or did you mean april 2011 as you said she had not hit the 12 month mark as yet?)

but no matter whether the time from diagnosis is not quite 12 months or is 18 months the news that your mum's Ph+ (leukaemic/CML cells) have increased beyond the level at diagnosis - I would advise that you/she seek expert advice sooner rather than later.

During therapy with a TKI such as imatinib (Gleevec/Glivec) any increase in Ph+ cells might be  a cause for concern.

 

I assume she is curently being treated with 400mg imatinib/Gleevec/Glivec?  If so then it might be that she needs a dose escalation to 600 or 800mg

OR

she has an imatinib resistant mutation.  A resistant muation would mean she needs to change her therapy and she has a few options depending on the outcome of further testing, including mutational analysis.  

 

Option1: A change of therapy to one of the 2nd generation TKi... nilotinib (Tasigna) or dasatinib (Sprycel)...

 

Option 2: Enter a clinical trial for one of the 3rd generation TKi's currently recruiting 

bosutinib (Pfizer)

OR 

ponatinib (Ariad) especially if she has the T315i mutation specifically.

 

I hope this is of some help. If I have misunderstood the situation then please let me know and I will try to help more specifically if I can.

 

Best wishes to you and your mum (mom)

Sandy