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Cessation interruptus


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#21 ChrisC

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Posted 03 November 2015 - 05:23 PM

Your case is a work in progress: so great that you are chronicling the whole thing. Someday folks will look back and see the varied history of CML and appreciate the patient souls who took the time to do the work of detailing treatment protocols.

 

Feel better, carry on.

 

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#22 SUE

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Posted 05 November 2015 - 10:01 AM

Scuba,

 

Thanks for your continuing efforts in the battle to defeat CML.  We all appreciate your determination and your sharing the results of your journey.

 

Sue


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 





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