Anybody else experience this with CML and/or TKI? I'm sure this too will soon pass and may or may not return at a future date.
burning palms, soles of feet, and sore tongue- anyone else?
Started by
tiredblood
, Jun 21 2016 08:59 PM
4 replies to this topic
#2
beno
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Posted 24 June 2016 - 02:02 PM
I don't have burning, but I have had soreness in the joints of both my feet, particularly where the big toe meets the foot.
DX 3/30/2016 WBC 484.2 FISH 95.3
took Hydrea 3/30-4/11
taking Sprycel 100 mg since 4/5
10 day break from Sprycel for platelet count of 12 4/26-5/8
7/07/2016 1.47% (IS)
9/30/16 BMB PCR .1259 switched to new onc
12/30/16 PCR .1569
4/7/17 PCR .0904 MMR
7/14/17 PCR .0520
12/1/17 PCR .0148
#3
kat73
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Posted 24 June 2016 - 02:37 PM
Lots of us have had the sore tongue - I'm surprised no one's posted. Actually, it's more like tongue sores.
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.
#4
jmoorhou
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Posted 01 July 2016 - 11:12 PM
Yes I had the tongue sores, they cleared up. Also I was taking a diuretic for high blood pressure, and it gave me sore joints in ankles, really sore, it hurt to walk.
Trey knows more about this, I think it's NSAID....not sure, but if you're taking meds for high blood pressure, and they're diuretics you might want to stop for awhile and see if that helps.
Trey knows more about this, I think it's NSAID....not sure, but if you're taking meds for high blood pressure, and they're diuretics you might want to stop for awhile and see if that helps.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#5
tiredblood
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Posted 03 July 2016 - 10:48 AM
Haven't had sores on the tongue thankfully, just a sore tongue. I go back to see the doc on 7/20 and usually get my labs the week before. He has had me on a multivitamin to see if my slight anemia will improve. Burning palms and soles of feet has moved on to intermittent instead of constant. 😀
It just seems it is one thing right after another. thankfully, things come and go.
It just seems it is one thing right after another. thankfully, things come and go.
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