6 replies to this topic

[vermontmike]

Hello folks. Have not been here in a while, to busy trying to survive and make ends meet.

Background info: dx 2007 CML, Gleevec for about 2 years. Been on Sprycel since. Have gotten to MMR on Sprycel and doing great.

However,( there's always a however or something along those lines!) I have been having BRUTAL headaches for over 3 months. I have been to

multiple doc's, following the "correct" protocol.Primary care person. specialists, others. Fell thru cracks of health care. Had 3 CT scans done,

one for sinus, one for brain and another for a mass they found on my hard pallete. Just had an MRI done to see what else is going on.

Met with Doc today, a neurologist, about that MRI. Good news, yes there is evidence of brain matter. No bad things in there!

Seems there could be issues with spinal fluid. He thinks, one could be a low pressure headache caused from leakage of spinal fluid. Another is some

infection or allergic reaction from something in spinal fluid. The third was possible result of Sprycel meds over time.

Next step is he will talk to my Onc, compare notes etc. Then possible spinal tap to check pressure, and have fluid checked.

So...has anyone had these killer headaches after a substantial amount of time on Sprycel? Has anyone heard of Sprycel messing with spinal fluid?

Just wondering. Just want these to go away.

Thanks, Mike

Hope every one is hanging in there.

[CallMeLucky]

I assume you would have another more notable symptoms, but you should always be on the look out for PAH while on Sprycel.  I would mention to Dr just so they consider it and can rule it out.

Best of luck..

[sharcare]

What is PAH?

[sharcare]

What is MMR?

[CallMeLucky]

Pulmonary arterial hypertension

Major molecular response (indicated by a 3log reduction in PCR)

[Trey]

Sprycel is well known for causing severe headaches in some people, mainly after starting to take it.  But what you describe sounds like it is related to the Sprycel.  I would take a break from the Sprycel for a couple weeks to see what happens rather than having my spinal fluid pressure checked and fluids topped off if low (was your doc an auto mechanic before going to med school?)

[Ludwigh]

Hello Mike, havn't had anything last three strait months, here is what I experience and back ground

Been on Sprycel almost 3 years now. CMR for over 2 years. I have quite the array of side effects. I have head pressure, not quite a headache but pressure all over my skull and especially in my sinuses and nose, gets pretty bad. Not all of the time.  But can last of a month and a half. Comes with bad bone pain and pressure in my shoulder blades, skull (as mentioned) spine, hips, upper legs, and upper arms. Basically anywhere there is active bone marrow. Its bad enough where I have to take hydrocodone at night to sleep. Doesn't occur all of the time maybe every second or third month and the last episode was the worst I have had, lasted 1 1/2 months. Drove my crazy and demanded a PCR to make sure I was not relapsing. Still 0.00000. I chalk it up to the bone marrow turning over or regulating and I have heard that Sprycel can cause increased bone turnover.  Just my explanation. I explain this my oncologist and he is oblivious to it. So life goes on and I hope the next one is of lesser intensity.

Terry