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CML Journey: Week 6 - Oh the headaches!!!

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I've been on Dasatinib/Sprycel now for 6 days...

- On the very first day, about 4 hours after taking my first dose, I became very nauseous and threw up rather suddenly.  So far, that's happened only once.

- I've had a few bouts of diahrrhea each day, but since I've had IBS all my life, I'm used to it and can live with that, although it's noticeably worse with the Sprycel.

- It's the headaches that are really annoying.  They start about 5-6 hours after I take the Sprycel, and seem to last until about 12 hours later.  I started out taking Sprycel in the morning, but by lunchtime I was unable to look at a PC screen, so unable to do any work in the afternoons, and evenings were pretty blech...

I know you're supposed to take it at the same time each day, but I've tried to slowly shift the dose later in the day each day to see if I might be able to 'sleep through' it by taking the pills right before I go to bed.  The first night I tried it, I was too anxious and couldn't sleep right away, and then was kept awake for hours by the constant rumbling in my belly, so I felt most of that night's headaches...

Last night, I tried taking it at 10:00 just as I went to bed, and fortunately got to sleep... but when I woke up at 6:00 the headache was there, just as strong, and now at 14:00 it's still thumping away...

So a few questions for the 'hive mind' on this forum:

-When do you now take your TKI?

-What are/were your headaches like?  I'm asking because not only does my head hurt (temples, and right behind my eyes), but it also feels like I did as a kid when my orthodontist would tighten my braces - every single one of my teeth hurt too...  Did anyone else have that sensation, or do I just need to get to the dentist?  (Who won't see me anyway because I have a 'serious health condition).

-Did anything help with the headaches?  I'm trying to take paracetamol, but it seems to do absolutely NOTHING to address the headaches?

 

Sorry to hear of your struggle. Maybe a stupid question but how much do you hydrate? I have at least 2-3 litres of water a day.

I am told that you need a good supply of water to beat some of those symptoms.

Alex

I've read that too, so have been making a point of having lots of fluids... so I don't think it's that....   Thanks for the suggestion though...

Heya,

When I first started sprycel I had similar issues! Honestly my stomach has not really improved....though I started taking biomel (non-dairy probiotic) and that seems to help somewhat, although who knows, may well be a placebo!!

What dose are you on? I was waking up with headaches, like being hungover every morning even though I hadn’t drunk, until I lowered my dose! I’m on 50mg now (down from 100) and I really feel the difference. No more headaches!

Since you are only a week or two in, I will also say it’s worth waiting to see how your body adjusts. Mine certainly adapted after a month or two. 

First the good news - it will get better. As your body addicts itself (yes, it's an addiction), the headaches lessen. Should only take a few weeks.

During your transition, you can take an NSAID such as advil which will lessen the headache pain or take a few grams of curcumin.

Ideally, you would have been started on a lower dose of dasatinib (50 mg) so chance of a headache would have been reduced significantly.