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Cruise 3 weeks to Southeast Asia

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#41 winespritzer


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Posted 20 November 2017 - 03:24 PM


Hope this works:

1. www.lls.org

2. click LLSCommunity under Community Support

3. sign in

4. Scroll way, way, way down, maybe at least 4 'load mores'

5. Should see  "Reducing the dosage of desatinib" from 10/2/17... 


OR write to me at chinazalea@gmail.com and I will forward it to you...might be easier....put lls in subject...


I am awaiting appointment with leukemia/lymphoma specialist dr at sloan...thank you for your support.


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,









0.00- 4/16-10/17


70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue

#42 kat73


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Posted 20 November 2017 - 05:29 PM

winespritzer - Thanks.  That's kind of a weird site over there!  I "signed up" but it doesn't seem to offer any advantages over this forum, it seems to me.  Feels a little "siloed".  Good luck with the consult.

Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

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