Advanced Member
Posted 20 November 2017 - 03:24 PM
Kat,
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.
Winespritzer
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
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
Advanced Member
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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