5 replies to this topic

[snowbear]

So things have been going pretty good until I suddenly got a bad headache last week. I never had migraines until 2008 while I was living in Florida.  They went away after I moved back up north and I didn't have another one for 3 years and I've only had a few since which were always successfully treated with triptans (Maxalt or Imitrex).

 

Since this headache started, I've taken Aleve, Tylenol, and Maxalt with no relief.  I called my PCP last Friday and he called me in a prescription for Fiorcet.  Helps for a little while, but the headache keeps coming back and the pressure never goes away.  Got in to see the neurologist this morning - I had previously seen him for pain and weakness in my legs not knowing at the time it was bone pain from CML.   He's concerned that the leukemia is affecting my brain and said there are several ways that can happen, not just a solid tumor.  I told him that while I'm not PCRu yet, it is under control.  He said it didn't matter.  He ordered a MRI and depending on that report, he may do a spinal tap.  He also gave me a Rx for a painkiller and told me to stop taking the Fiorcet.

 

My question if anyone knows (Trey ??)....how can CML affect the brain, what is the treatment, and prognosis?  I don't want to freak out, but I want to be prepared in case that what it is.

 

 

p.s.:  I take Gleevec, not Sprycel the headache medicine. 

[Trey]

Regarding the neurologist thinking CML is affecting your brain, it is rare for leukemia (especially CML) to take up residence in the brain and spinal fluid.  This is because the body has a blood-brain barrier (BBB) which generally isolates the brain from blood-borne invaders and issues, although it is not an absolute barrier.  Sprycel can penetrate the BBB, so if CML becomes resident in the spinal fluid or brain, Sprycel would be preferred.  This is also likely why Sprycel causes such headaches since it crosses the BBB.  When CML leukemia crosses into the brain and spinal fluid it usually occurs during Blast Phase and takes the form of either a granulocytic sarcoma (aka Chloroma) or else leukemic meningitis (LM).  It is unlikely you have either of these.  But you can read more in the link at the bottom.

 

The general causes of headaches can be elusive.  Often the cause is never found.  For instance, calling something a "migraine" does not explain what it is, which is generally unknown except to guess about several possible issues which may contribute.  The easiest headaches to diagnose are dehydration, alcohol poisoning, and a few others.

 

Gleevec and all TKIs can cause changes in hormone balance, and that is a possible explanation for your current pain.  The real reason will likely elude you (and your doctors).  You can try the usual things such as taking in more fluids, altering diet, etc, etc. 

 

If you do not already split Gleevec dosage, I would suggest that.  Almost from the beginning I split dosage 200mg morning and evening.  It helped reduce side effects for me.

 

https://www.seattlec...in_leukemia.pdf

 

http://www.mayoclini...es/con-20026358

[snowbear]

Thanks, Trey. It is reassuring that the chances of this being CML related are slim to none. But I guess doc has to rule out the big, bad causes before assuming it's *just* a particularly stubborn headache. 

 

I wondered if it was the Gleevec - I had been having trouble with eye pain and puffiness in the morning, but that was always relieved by a little Aleve and getting up and moving around.  Onc suggested I elevate my bed which I did.  But this is not really near the outside of my eyes like before - it's deeper in my head. 

 

I made it through work today.  I'll pick up the painkiller on my way home and veg out tonight.  Hope it works !

[August1]

Hi Snowbear,

I've had chronic (and recurring) headaches for quite a while since starting TKIs (Gleevac and Sprycel). I even had a couple of optical migraines which were interesting to say the least. I also was concerned about the potential impact of CML on my spine and brain but as Trey mentions the odds are very, very low, especially for someone responding to the drugs. For my part I've had MRIs, etc., and everything has been just fine and the headaches have improved over time.

 

Take care,  

[CML2012]

I have been told to stay away from Tylenol because it is hard on the liver and the fiorcet can cause reoccurring headaches. So I agree with staying from that as well.

[snowbear]

I had a bad reaction to the codeine last night. Quit all meds to give my stomach a break and see if the headache clears on its own.  Had the MRI today.  Go from there.