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Lumpy, painful, itchy head

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#1 sharcare


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Posted 03 December 2012 - 09:21 PM

Been on Sprycel since Nov. 2012.  Side effects of fatigue and headaches come and go. The headaches feel like ingrown hairs combined w/ severe itchiness. (I started using Tea Tree Oil Shampoo, which doesn't seem to help).   My head breaksout. Pimple like lumps on head. Like someone said to me, better than being on ur face! Anyone else w/ these side efffects?

Also, the water retention and weight gain is driving me NUTS!!!!!!

I had recently lost 30 pounds (took me 6 months of hard work) and now since being on the Sprycel for 4 months I have put on 15!  Rings don't fit, most days, and ankles swell.   I do take a 20mg. water pill daily.

I am also constipated and therefore stomach bloats.  I take Senecot S daily for that.

I'm getting tired of these side effects and additional pills I need to take daily.

Will they ever go away?

On the bright side my blood work looks good.  I don't know all the tech terms but I know my WBC count is in the low normal range and my "bad" chromosomes r down to 28%.

What is the ultimate goal in our bloodwork that we are looking to accomplish?

I have only been on med for 4 months and I am ready to go off.  Also, my moods are horrible. 

I need some reassurance

#2 sharcare


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Posted 04 December 2012 - 01:04 PM

Anyone? Please!

I need to know I'm not alone here!

#3 JMGrad


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Posted 04 December 2012 - 01:29 PM

Hi Sharon

     Ive been on Sprycel since Feb 2012 and I do have the little bumps too - but I didnt get so lucky - they are on my face They were terrible when I started out but are manageable now (Thank GOD! I looked like a teenager again!) I am constipated as well and at my last visit the PA told me to take Colace.  When he told me I mentioned that I hated the idea that I would have to add another pill to the growing 'rest of my life' regime but all he had to say to that was 'Would you like to go to the bathroom?" Lol. He had a point. 

    Trey has a good fact page on where our blood counts should be http://community.lls.org/docs/DOC-1273  I hope it helps!

   I hope you feel better soon!!


#4 Trey


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Posted 04 December 2012 - 08:55 PM

The itchy head thing is a fairly universal complaint about TKI drugs.  Even on low dose Gleevec I still have it. 

You are still getting used to Sprycel, so you will need to give it a couple more months to see which side effects go away and which ones stay like a poor cousin who won't leave and drinks all your beer. 

#5 BY196


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Posted 05 December 2012 - 10:55 AM

Hi Sharon:

I too have the bumps on my head, plus I get them on my face. They've definitely gotten less frequent over time, though I still get them. (I went on Sprycel in February and things settled down a bit in the fall.) I have not found anything that makes them go away faster, unfortunately.


#6 Pin


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Posted 07 December 2012 - 07:01 AM

I don't get itchy lumps from Gleevec but I do have sore patches on my scalp that I tend to notice when I wash my hair (it just feels a bit bruised or something, like I've bumped it on something - but every day!).

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

#7 Guest_billronm_*

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Posted 07 December 2012 - 12:38 PM

Hi Sharon,

   We all know how hard it is to be patient when you are so new to cml and the meds. The side effects do get better, they don't all go away but they are tolerable, mostly nuisance things, my head gets sore once in a while and I've had some little bumps on my scalp, I've been on sprycel 2 years now and the headaches are almost gone once in a great while I'll get a mild headache and usually 1 ibuprofin takes care of it. But you can't even think about going off your meds now the alternitive is pretty bad. I take a lot of pills and I am so sick of them, but they keep me alive so I'll just keep complaining and taking them anyway.

  As far as mood swings go we are women and what our bodies go through we are going to get them anyway, and now that they took our hormones away UGGGGG!       Billie

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