Update: I am 4 days off sprycel and patches are starting to lighten up. At least the patches have quit growing. Bloodwork tomorrow and follow up with Onc next Thursday.
Skin rash on sprycel?
Started by
mscl
, Oct 28 2016 02:43 PM
25 replies to this topic
#21
mscl
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Posted 02 November 2016 - 03:13 PM
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
#22
M.A.
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Posted 05 November 2016 - 03:19 AM
Glad to hear the red patches have started to clear up mscl.
I woke up one week ago with red spots on my toes, feet and lower legs. I'll try to post a photo in case it's of use to others (excuse my daughter's dainty foot and my couch in the pic). Pat/Hannibellemo, I wonder if these look like the ones you had in 2012?
I did panic a bit when I saw it as I've never had anything like it before and it followed a week of severe fatigue. I figured it was a reaction to Sprycel as there are a long list of possible skin issues listed on the Sprycel packet insert.
Anyhow... the hospital docs who looked at it weren't too worried and figured it was probably from mosquito bites (I had been out at dusk with lower legs and feet exposed the night before but have never had any reaction like this to mosquito bites before).
The good news is it's now almost totally cleared up. I'm guessing it was a combination of mosquito bites plus a reaction due to Sprycel, either an immune-type flare up or ecchymosis from Spryce-induced low platelets/platelet dysfunction/bleeding beneath the skin.
I had a single spot of ecchymosis a month or two ago on my forearm and this cleared up after a couple of weeks too.
On another note, thanks to all of you for your posts on this forum. I've been lurking for six months and it's been a sanity saver and a fantastic education. Trey's page for the newly diagnosed was a massive help too!
cheers,
MA
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CML diagnosed April 2016
Type One Diabetes diagnosed April 1980 (age 12)
BCR-ABL (IS)
46.77 April 2016
3.568 July 2016
0.076 Oct 2016
0.016 Feb 2017
0.0079 April 2017
0.014 July 2017
0.019 Sept 2017
0.011 Nov 2017
0.019 Jan 2018
Sprycel
100mg April 29 - September 22
75mg September 23 - October 28
50mg October 29 2016 to present
#23
hannibellemo
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Posted 05 November 2016 - 08:34 AM
MA, I have also had those type of spots but those aren't what I had on my toes, Those do look like what my mosquito bites become now.
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
#24
mscl
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Posted 05 November 2016 - 11:22 AM
Here's a pic of one arm. Was on both arms like this. Took about 4-5 days to develop to this.
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Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
#25
kat73
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Posted 05 November 2016 - 02:50 PM
I, too, have found that bug bites get much redder than they used to and they stay around about six times as long as they used to. It's disconcerting, very hard to get anyone in the medical profession excited about, and disfiguring and demoralizing. However, I have gotten used to this new normal. Just one more thing.
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.
#26
beno
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Posted 10 November 2016 - 09:02 AM
I, too, have found that bug bites get much redder than they used to and they stay around about six times as long as they used to. It's disconcerting, very hard to get anyone in the medical profession excited about, and disfiguring and demoralizing. However, I have gotten used to this new normal. Just one more thing.
I've also noticed much worse reactions to mosquito bites than I've ever had before. In addition, I can't really prove this, but I seem to be more attractive to mosquitoes than other people. Small sample size, but twice this summer I went for a walk with one of my kids and I came home with dozens of bites and my kids only had 2-3.
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
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