I have had a bad cold and then sinus infection since just after thanksgiving, but I am finally feeling better except for the fact that I can't seem to get past my daily bloody nose and headache. I am using a personal humidifier, just wondering if this is another side effect of the Sprycel (100 mg)... My Hematologist didn't seem to be concerned - his exact comment was 'it is winter', but he doesn't ever really acknowledge side effects attributed to the meds. Anyone else out there?
Anyone having issues with repeated bloody noses?
Started by
LAC1223
, Jan 13 2015 10:37 AM
bloody nose
6 replies to this topic
#1
LAC1223
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Posted 13 January 2015 - 10:37 AM
#2
clford
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Posted 13 January 2015 - 02:00 PM
I had horrible nose bleeds when i was first diagnosed with cml and began taking sprycel. Platlet count got so low, i ended up in hospital, i am now on tasigna, platlet count has gotten much better , but took about a year to get there, slow process. I guess i am not understanding why your hematologist does not acknowledge side effects attributed to the meds. I believe the manufacturer of sprycel, asks that they are made aware of the side effects for patients, some side effects i have learned from my hematoligist is critical in deciding to reduce dosage or change the prescription. 
I love my doctor 
#3
LAC1223
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Posted 13 January 2015 - 03:31 PM
LOL - I loved my first doctor to. But he retire, not warm and fuzzy with my second, yet (I hope). I always say I am going to get him to listen to me, then I cave. Think the loss of backbone is another side effect I forgot to mention. 
#4
Damerault
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Posted 13 January 2015 - 08:40 PM
I also have a hematologist that really doesn't acknowledge side effects from the TKIs either.
11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.
Remain on full dose Tasigna
Major p210 International Scale
05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000
Be well, Diane.
#5
Pin
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Posted 13 January 2015 - 10:22 PM
I find that I often get them if I bust a blood vessel blowing my nose when I have a cold. They usually clear up if I can let them heal (by not blowing my nose hard).
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
#6
chriskuo
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Posted 14 January 2015 - 01:38 AM
How are your platelets?
#7
LAC1223
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Posted 14 January 2015 - 08:40 AM
Going for CBC tomorrow as my WBC was up and my platelets were off at my last CBC in late December - which was right in the midst of the cold. I'll let you know how I make out. I also have taken a page from PIN's book - trying to avoid blowing my nose... also using a personal humidifier, if nothing else, my skin feels really good now
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