8 replies to this topic

[Kittywatkins]

So I've been blaming everything on the cml and tkis. I know headaches can be part of the side effect. And yes I've had headaches lasting up to three days. My concern is this. Since this morning I've had a sharp headache only on my right side of my head going into my right eye socket. Advil only working fir two hours. It's is now 10pm and still with this sharp like headache on my ride side. Has anyone had this? Should I just say oh it's the cml?

[Billie Murawski]

Hi Kitty,

 When I get my bad headaches it's always in my right temple and it affects my right eye also. When a headache starts there for me I know its going to be a bad one and they last a few days sometimes. A lot of people on the board are using alleve, I keep forgetting to pick some up. I feel for you, lying down in a dark quiet room with a cool washcloth helps me. Billie   

[dede5]

I've had frequent headaches since I was a child. Had workups but never narrowed it down. I know mine are not from the CML. That being said, if I had symptoms like you've described, and it was the first time, I would head to ER. At the very least, I would make a doc appt and get their opinion. Then, if it turns out to be nothing more than a symptom of CML or side effect of med, you'll know next time. This is just my opinion, of course, not based on experience. Of course, I'm on high alert because I live in fear of stroke from the a-fib.

[Damerault]

Have you seen a Neurologist? I was experiencing awful headaches on 300 mg Tasigna. I believe the headaches were side effects. Neurolgist ordered an MRI to rule out anything bad. Thank God he didn't find anything. He prescribed Divalproex which I now take daily with my Tasigna and my headaches are so much better than they were. See a Neurologist to get help. Good luck.

[Trey]

The headaches ares certainly a TKI side effect, primarily of Sprycel, Tasigna next, and Gleevec last.  I have not seen enough data on Bosulif and Iclusig.

[Terran]

My sprycel headaches are wicked. Doctor is switching me to tasigna. I'm afraid to get my hopes up but I guess I am anyway.
By the way, I'd be a much better conversationalist with an old school key board.

[shaynalee]

My husband started sprycel a couple weeks ago and he had terrible headaches for the 1st week, now only on occasion. He takes it with an excedrin (no asprin) in the evening. He also started taking magnesium and b2 every morning, and that has put a stop to them almost completely. Stress on the body often times reduces these 2 vitamins and deficiency causes headaches. Clear it with your doctor and look it up if you are curious about the role they play. Hope it gets better!

[lsburris]

I have been on 300mg bid Tasigna for just over a year and have gotten great PCR results but in November I started having daily headaches that never seem to go away.  At times these have been severe but most days I have managed without the use of narcotics.  I have seen my PCP and done all the work ups including MRI and nothing.  PCP and Onc chalk it up to side effects so today I got a call from Onc and will be switched to Sprycel.  I'm a little concerned on a number of levels...losing response, new set of side effects, etc.  I'd be obliged to any recommendations on how best to navigate this transition of TKIs?

[scuba]

I have been on 300mg bid Tasigna for just over a year and have gotten great PCR results but in November I started having daily headaches that never seem to go away.  At times these have been severe but most days I have managed without the use of narcotics.  I have seen my PCP and done all the work ups including MRI and nothing.  PCP and Onc chalk it up to side effects so today I got a call from Onc and will be switched to Sprycel.  I'm a little concerned on a number of levels...losing response, new set of side effects, etc.  I'd be obliged to any recommendations on how best to navigate this transition of TKIs?

 

I see you are a diver - one thing that helped me was getting Nitrox certified. The enriched air made diving an absolute pleasure despite low counts (at the time). 

 

You should supplement with Magnesium Taurate (125mg/twice a day) along with Curcumin. Curcumin will eliminate your headaches while taking Sprycel. I also took Sprycel, but am taking time off for good behaviour. No need for full dose given your Tasigna level. Ask your oncologist if you can start at 50mg first and go up if needed. Likely you will go down in dose (especially if you take Curcumin). Curcumin is great for headaches.

 

And keep on diving. On land as well as in the water.