winespritzer - I had the whole body skin peel thing, too! Weird. Went on and on, in cycles of about 8-12 weeks for about a year. But then it stopped and I haven't had that particular side effect anymore. I did forget to add to my earlier post that, sadly, the tinnitus and hearing loss did not ease up after 3 weeks off the Sprycel. If anything, they are worse, and in a week or so I'll find out by how much.
Recurring Sore Throat
Started by
August1
, Jun 17 2015 08:10 AM
21 replies to this topic
#21
kat73
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Posted 22 July 2015 - 12:03 PM
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.
#22
winespritzer
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Posted 28 July 2015 - 06:04 PM
Thanks a zillion Trey. I was hoping to get to 0.01 but my PCR came out at 0.07...report also said IS scale is 0.03%.Doctor said numbers are still down and I am doing well Ha ha , he didn't say, "not to worry today".
Does that mean I should worry? I hope it's a blip.
My blood was tested at GenPath not LabCorp as has been the case since 1/14. I was worried because my onc's group was swallowed by a bigger predatory factory like group. Report lacked the tracking graph I had gotten used to - guess because they have no data for me. &^%$%
I sure hope the number doesn't rise higher in 3 mos.
But I will try to remain calm, sort of!!!
Appreciate all of your knowledge and willingness to help us...you really have explained lots, better than my onc ever has.
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
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