Dx was 2/10/12, put on 100 mg sprycel. Almost exactly a year ago, I developed pleural effusions. Went off sprycel for a bit, then reduced to 50 mg with no other PEs. All this time have remained undetectable. Last Saturday, I developed what I thought were hives because I had been around a park at a fall festival. Even thought it might have been poison ivy on the hay bales. I got worse, so I went to the urgent care center. Put me on an antibiotic. Still got worse, so called urgent care center on Wednesday and they gave me a stronger antibiotic. Went back to urgent care center again last evening. The doctor there still thinks hives and gave me a steroid shot and wants me to come back tomorrow. Called my Onc office today and my Onc is out until Monday. They don't want me to stop sprycel yet and call back Monday with an update. These originally looked like hives, however now they have gotten bigger around and flatter and have morphed together into bigger patches. Very concentrated on my upper arms and front of my thighs small amount on my back nothing on the front of my trunk. Anyone had a skin rash from sprycel? What did it look like? What was the treatment or result?
Skin rash on sprycel?
Started by
mscl
, Oct 28 2016 02:43 PM
25 replies to this topic
#1
mscl
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Posted 28 October 2016 - 02:43 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.
#2
beno
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Posted 28 October 2016 - 02:57 PM
I've had a rash that was itchy little bumps in patches, primarily on my scalp and hands. However, mine were minor and certainly wouldn't be confused with hives.
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
mscl
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Posted 28 October 2016 - 03:09 PM
Hives typically itch, but mine don't. Feels more like a tingling, burning sensation. I'm describing it as feeling like a sunburn. Beno...what did you do to clear them up? Change med? Take a break from med?
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.
#4
beno
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Posted 28 October 2016 - 03:37 PM
I just used some OTC hydrocortisone cream on my hands. On my scalp, I switched to a tea tree oil shampoo and it has worked wonders, but it did take some time.
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
#5
Dona_B
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Posted 28 October 2016 - 04:14 PM
I have a few bumps on my hand but have been getting reptilian type skin on my palms and along the side. Before Sprycel (50mg currently), they would just get really dry at the knuckles and sometimes bleed. Some days I drink a lot of water and still feel like I'm drying up from the inside out.
DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17
#6
mscl
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Posted 28 October 2016 - 04:16 PM
Any change in your med or dosage?
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.
#7
beno
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Posted 28 October 2016 - 04:35 PM
I did not change meds or dosage. Perhaps some prednisone would help, but I'm not a doctor.
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
#8
mscl
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Posted 28 October 2016 - 04:52 PM
My hands and feet are all fine and dandy. The hive-like bumps that started on my upper arms and now on my thighs, keep morphing together. Largest areas, if a perfect circle, would be about as big around as a baseball. Got a prednisone shot yesterday. Not seeing any progress yet. ðŸ˜"
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.
#9
Trey
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Posted 28 October 2016 - 08:47 PM
What does it look like:
[Removed]
Edited by Trey, 29 October 2016 - 09:45 AM.
#10
mscl
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Posted 28 October 2016 - 10:23 PM
None of those Trey. Probably the closest are hives on this webmd site. The patches that are joining together are getting quite large and a darker red than this.
http://www.m.webmd.c...hives-urticaria
http://www.m.webmd.c...hives-urticaria
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.
#11
Trey
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#12
mscl
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Posted 29 October 2016 - 10:18 AM
Mine are larger and redder and more consistent in color across the patches. Not so light pink.
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.
#13
simone4
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Posted 29 October 2016 - 12:12 PM
mscl, I had hives for over 8 months last year. It was attributed to Gleevec. I went to Allergist, dermatologist,
and Endocrinologist. All said it was a medicinal reaction to G. Onc took me off for two weeks, hives
got better, but when I went back on a lower dose of 200mg., they came back.
The only help was 7 day pred pack. It helped for 5 weeks, then they returned. Did this
three different times within 8 month period. Then I got shingles. They were a cake walk
compared to the hives. Took antiviral for them and surprisingly the hives never returned.
It was worse than the cancer dx. Alot of itching, burning all day and night. A rx pred
cream would relieve them at night.
My onc told me if they didn't go away I would have to change to Sprycel. It didn't
come to that. Maybe you could change to Gleevec if it is an allergy to Sprycel..
So sorry you are going through this. It is trial and error. If you can come off
Sprycel for two weeks and they abate, it probably is an allergic reaction to the drug.
Only advice is Medrol pack really helped, but only temporarily.
Simone
#14
mscl
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Posted 29 October 2016 - 02:56 PM
Simone, how long were you on Gleevic before the hives/rash showed up?
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.
#15
simone4
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Posted 29 October 2016 - 05:15 PM
Simone, how long were you on Gleevic before the hives/rash showed up?
I was on Gleevec for over 6 years when the hives showed up. That's what had
all the docs puzzled. My pharmacist told me an allergy reaction can occur at any
time, however. My allergist checked for antibodies in my thyroid. They were positive,
and sometimes urticaria and hypothyroidism are parallel diseases.
The only good thing is that they went away eventually and I have not had an outbreak
since March.
Do they itch and burn?
Simone
#16
mscl
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Posted 29 October 2016 - 05:30 PM
They have been burning...similar sensation as a bad sunburn. However, today, not as bad.
Went back to urgent care center today, my third visit, my third doctor and my third diagnosis. My Thursday visit Doctor wanted me to come back to follow up after 48 hours, so that is why I went back again today. The doctor today thinks it's Erythema Nodosum which could have a number of causes. Suggested I take my existing antibiotic at a different interval. Also put me on an anti-fungal Rx.
Okay get this remarkable timing...I'm at the pharmacy, waiting to have the latest Rx filled and there's my Onc. He looks at it, says take the anti-fungal only if I want, he didn't think I needed to though. Stop my Sprycel and make an appointment with him in 1-2 weeks. Got to love your Onc that does an office visit in the local pharmacy. His last words were...might be viral or "our friend Sprycel".
Went back to urgent care center today, my third visit, my third doctor and my third diagnosis. My Thursday visit Doctor wanted me to come back to follow up after 48 hours, so that is why I went back again today. The doctor today thinks it's Erythema Nodosum which could have a number of causes. Suggested I take my existing antibiotic at a different interval. Also put me on an anti-fungal Rx.
Okay get this remarkable timing...I'm at the pharmacy, waiting to have the latest Rx filled and there's my Onc. He looks at it, says take the anti-fungal only if I want, he didn't think I needed to though. Stop my Sprycel and make an appointment with him in 1-2 weeks. Got to love your Onc that does an office visit in the local pharmacy. His last words were...might be viral or "our friend Sprycel".
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.
#17
SUE
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Posted 30 October 2016 - 04:48 PM
I was dx in April 2013 and put on 400 mg Gleevec. After 3 months got rash somewhat similar to what you describe--large pink "blobs", not raised, not itching. They were on my arms, legs, and chest--not my face. Was put on prednisone for a couple weeks and rash improved. Went off prednisone and rash came back. Went off Gleevec mid-November 2013 and rash improved. Started Sprycel 50 mg on Dec 31, and rash went away entirely after a couple weeks. Since I've been on Sprycel I have had some strange rashes(especially when started on blood pressure med). I stopped Sprycel for a few days and also BP med, and rash went away. Resumed Sprycel, but not BP med; rash stayed away.
Now facing BP issues which require BP meds, and dx with mild PAH. It sounds as though your Onc has a good approach. If the rash goes away when you're off Sprycel, you and he can decide on cutting dosage, switching cml med, etc.
Sue
Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;
August 2013, FISH 8.7;
Oct 2013, FISH 5.6
Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;
Feb, 2014 PCR 6.8
May,2014 PCR .149
Aug, 2014 PCR .015
Nov. 2014 PCRU
March, 2016 went down to 40mg Sprycel
Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.
Nov 1 2016 resumed Sprycel 20 mg daily
Dec 2016 PCRU
March 2017 PCR 0.020
May 2017 PCRU
Sept 2017 PCRU
Dec 2017 PCRU
#18
mscl
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Posted 31 October 2016 - 01:33 PM
I sure wish I could post a pic on here for my CML friends.
I am just on my second day of no Sprycel.
Sue, when did you start to see a noticeable difference? I don't expect these to go away immediately, but just looking for that little glimmer of improvement.
I am just on my second day of no Sprycel.
Sue, when did you start to see a noticeable difference? I don't expect these to go away immediately, but just looking for that little glimmer of improvement.
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.
#19
hannibellemo
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Posted 31 October 2016 - 05:24 PM
Back in 2012 I posted a photo of the weird rash I had that was only on my toes. You read that right - my, toes! It looked like dense petechia (sp) and it itched and hurt. Shortly after I developed a pleural effusion. Possible related, who knows. I haven't had it since my dose was lowered to 50 mg.
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>
#20
SUE
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Posted 31 October 2016 - 08:56 PM
I think the blobs started to fade a couple weeks after I went off Gleevec, and progressively improved. I started Sprycel(50 mg) about 6 weeks after stopping Gleevec, and the blobs continued to fade until they disappeared completely.
Good luck. Keep us posted.
Sue
Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;
August 2013, FISH 8.7;
Oct 2013, FISH 5.6
Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;
Feb, 2014 PCR 6.8
May,2014 PCR .149
Aug, 2014 PCR .015
Nov. 2014 PCRU
March, 2016 went down to 40mg Sprycel
Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.
Nov 1 2016 resumed Sprycel 20 mg daily
Dec 2016 PCRU
March 2017 PCR 0.020
May 2017 PCRU
Sept 2017 PCRU
Dec 2017 PCRU
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