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Hopefully exciting times ahead - Sprycel dose reduction!

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Hi all, haven't posted on here for a good while but just wanted to update that I will be 7 years on with CML and on drugs on 16th October!  I had first 2 years on Imatinib 400mg, reached CCyR but I then plateaud which led to me being put onto Sprycel 100mg for the last 5 years.  Have been at 0.003 (MMR 4-4.5) for last year and decided I wanted to explore stopping or a dose reduction.  I have very little side affects apart from fatigue and some nerve issues in feet and fingers.

I chatted with the main guy at Kings and we decided to drop dose in half for a year to 50mg and monitor with a view to stopping in a years time.  He said he wanted me to be at MMR4.5 for 2 years before stopping so believes this is the safest course of action.  I started 50mg today and will keep you up to date with how it goes every 3 months. Fingers crossed and hopefully my immune system will have learnt how to deal with the CML...

 

Hi Ian

Good luck. Hope it goes well for you.

Best

Chrissie

HI Ian,

Wishing you the best of luck with dose reduction and ultimately stopping and TFR. Hopefully you will find time to share your experiences with us on this forum. 

Sandy

Thank you and will let you know if I notice any changes and what counts are.

UPDATE: Have just had first 3 month test since halving in Spetember 2016 and still at 0.001 so MMR.  Very pleased and feel every so much less tired and foggy :)

0.001%.... Ian this is equivalent to MR5 which is much lower than MMR/MR3 which is 0.1% (see page 14 for log reductions and molecular equivalents on page 14 of the Q-PCR booklet which you can download from the home page etc.) so many congratulations! Hopefully you will maintain this kind of low molecular level at the reduced dose and good to hear your side effects have improved.

Sandy

​6 Month UPDATE: Have just had second 3 month test results since halving in September 2016 and still at 0.003 so MMR.  Really chuffed as this proves that half the dose is keeping everything in check.  I have to go to see specialist at Kings in Sept to see about trying to stop TKI completely.  So far so good and Happy Easter everyone!

Ian

Ian,

That's great ... and assuming an IS calibrated result 0.003% is plenty more than MMR (MR3), it's MR4.5 - an excellent result! Congratulations.

David.

HI Ian:  I joined CML Support about a year and one month ago.  I posted for the first time yesterday.  As to your dosage reduction on Sprcyel, here is what I have to say.

I was diagnosed on 23 February 2009, in the accelerated phase. My white blood count was 354,000.00. After initial treatment, my Sprycel dosage was reduced to 100mg.

Complete molecular response was achieved by October 2010. I stayed on 100mg of Sprycel for quite some time though. 

I reduced my Sprcyel dosage to 50mg well over three years ago. I'm still undetectable.  

Like you, I am considering stopping drug therapy.  I had my blood work done to measure my mature killer NK T cells. 

Keep us - me posted. I will do the same! Thanks! Philip 

9 Month UPDATE: Have just had third 3 month test results since halving in September 2016 and still at 0.004 so MMR 4.5 still!!  This still proves proves that half the dose (50mg Sprycel) is keeping everything in check.  I have to go to see specialist at Kings in late Sept to see about trying to stop TKI completely.  Will let you know what Kings say. #excited #nervous
Ian