Ibrutinib and headaches

[SycamoreN]

Has anybody experienced persistent headaches while taking Ibrutinib?

I've been on the medication for about two months now and although I haven't had any significant side effects so far (except great benefits), I've been having severe headaches in the last two weeks. Could this be drug related?

[bkoffman CLL CURE Hero]

Could be drug related but should be assessed- many nasty causes of HA in CLL- bleeding, CLL in the CNS, infections, and secondary tumors. While these are not likely, you need to be examined. Stay strong Brian bkoffman.blogspot.com

[SycamoreN in reply to bkoffman]

Thank you so much for your reply, Brian. I think the headaches are from the residue of a cold which has persisted for about 18 days. My GP has prescribed various painkillers and nose spray but I always wake up with this thumping headache and a massive pressure in my head which slowly eases in the course the day.

Great blog!

[Berrytog in reply to SycamoreN]

Hi

I've been on Ibrutinib for just over a year and do suffer from a thick head now and again, in fact most days, but nothing debilitating, a paracetamol sorts it out.

However, I have reported this to my trial doctors and it is a reported, common side-effect and is listed in my trial documentation as common but not likely and that is stated as meaning that it has been reported by 3-20 percent of people taking the drug. Like you I ask myself, is it 3 or 20 if it has been reported but apparently that is the definition of common in this instance.

I concur with Brian, report it if you are on a trial, get it looked at, I am told that fellow sufferers do report secondary cancers.

[SycamoreN in reply to Berrytog]

Thank you so much, Berrytog. It's interesting to hear that you and others have suffered from headaches. I WILL report it to my haematology team, as the more of us on Ibrutinib report such side effects, the better idea it will give them about the drug.

[bkoffman CLL CURE Hero in reply to SycamoreN]

Thanks for the kind words. If your HA are improving, I wouldn't worry, but persistent morning HAs that improve during the day suggest an anatomical cause that is relieved with change in posture. That can be some simple sinus pressure or a more dangerous increase in intracranial pressure from brain lesions, so please continue to be vigilant.

[ThreeWs]

Hi SycamoreN,

Your condition should be watched closely for any possible connection to hemorrhaging but always check out the simpler less dramatic causes. CLL is often associated with sinus infection and sinuses can impart some wicked headaches. I would explore this as a likely source.

WWW

[SycamoreN in reply to ThreeWs]

Thank you, ThreeWs. I'll have my sinuses checked

[Berrytog in reply to ThreeWs]

Hi ThreeWs

Now that is interesting what you say about haemorrhaging, about three weeks ago, one morning, my wife noticed a red mark on my forehead which gradually grew to a two and a half inch circular blood red patch just above my eyebrow, it lasted two days then gradually disappeared. I went to A & E and blood tests revealed nothing, reported it to my team and sent before and after photographs but there was no explanation from anyone and I have to say that my headaches discussed with SycamoreN have become more frequent since, more like a pressure or headcold. I am now on two-monthly visits to the trial team and am due to return next Monday but I am surprised that they did not think it necessary to call me in particularly as Subdural haematoma and Cerebrovascular haemorrhage(stroke) are listed as rare but serious side effects of Ibrutinib!!

[ThreeWs]

Hi Berrytog,

Only the serious subdural Hematomas to my knowledge have been associated with patients on Warfarin (Coumadin) and have had a fall or other trauma to the head. That said it is safe to assume that Ibru in some manner, not completely understood, creates a condition where bleeding can occur more easily. My platelets remain lower on Ibru than in prior years of W&W and through 2 TXs. I do not heal quickly from cuts or bruises. I am very active and work with stone so abrasions are not infrequent. On my legs, the brunt of most abuse, I notice localized edema that persists with cuts or abrasions. Rare hematomas have popped up on the inside of my mouth for no apparent reason so I suspect that your red mark may well be connected to Ibru.

I have been on Ibru for nearly 39 months now and have been through two heart procedures requiring anticoagulation with Heparin and have not had any serious problems. That does not mean we should not remain very vigilant.

WWW