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Diagnosed June 2017

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Glad I found this site.  Very useful forum, lots of interesting advise.  Let me introduce my condition, age 59, female, healthy, exercise, lives in Canada. Was treated for knee pain etc, part of the symptoms on CML, problem has disappear. 

 

i first found out with a blood test after having severe breathing problem, my count was above 400, why it was missed by family physician, who knows. Was admitted to hospital for treatment, brought white blood count down.  Once discharged was put on spyrcel, this has reduced all blood counts to the point of having to receive platelets, red blood and antibiotics for neutrophils.  This happen again this last two weeks  and had to get red blood, two pints. and now off Spyrcel for one week. Blood work yesterday, red blood normal, I feel good not tired.  Neutrophils low, platelets low.  Side effects  - spyrcel 100mg.  Tired all the time, after 3 months, normal for September then low counts.  Is this the same for others 

Hi Sue,

I'm glad you found us. The first few months are often very tough on people. It was for me, I know. Often things settle down - but sometimes they don't, or everything but one important thing doesn't. 

Sprycel / dasatinib is very good - it really works! Sometimes a little too well, and it can take your body time to get used to it. 

David.

Thanks David.  I'd be glad when it settle down.  Now I am off the tablet because all blood counts were down.  After two days of not taking the tablet, tiredness seem to go away.  Did blood test after one week, all counts seem to coming up slowly.  I think I'll be off for a month before I am reintroduced.  Dr says things should be more normal when I start again.  So far not side effects apart from being tired, and that's also because it lowers my red. 

Hi sue,

my mother has a similar situation with imatinib / gleevec at the start of her treatment . her Neutrophils and platelets werent at the danger zone but they were falling too fast. 

so her doctor put her at 300 mg ( reduced dose - normal dose 400 mg) then her body adjusted . after her dose adjustment her values got better and her PCR results was acceptable . so we never spoke again about getting normal dose again . 

at the time i wasnt aware of this steps for neutropenia and Thrombocytopenia but procedure is a little different from her doctors approach.

they should do what your doctors are doing right now . stopping medicine until your values get at wanted range then starting at the same dosage . if it occurs again then next step is reducing dosage. her doctors skipped the first step and they do directly to reducing step . 

according to HIGHLIGHTS OF PRESCRIBING INFORMATION for SPRYCEL 

https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/021986s013lbl....

look at page 4 for your situation . 

this is revised version 2013 . i am not sure if there is newer versions . 

my key words for google search are '' sprycel tablets fda ''

ps english is not my native language .