Acalabrutinib

[BethIlia]

Hi everyone, I'm new here.

I started on Acalabrutinib in February 2022 after being in remission for 12 years. Unfortunately I started getting awful headaches, sickness, palpatations, confusion, itching, pain and blood pressure shot up. Eventually was taken off all the other drugs I was taking (Allopurinol, Metoclopramide, Dapsone and Co-Dydramol for headaches). I'm now only taking Acalabrutinib plus Co-codamol and Tramadol for headaches and pain but am seeing my Consultant on Thursday to see where we go from here.

Has anyone else had similar problems?

[TimHB]

I had your same symptoms on Acalabrutinib, especially the heart palpitations. For me this was an improvement over my previous side effects from 3 years on Ibrutinib, but still hard to tolerate. The heart palpitations landed me in the hospital twice within a few weeks with PVCs (premature ventricular contractions) and bigeminy. They took me off Acalabrutinib and once we get my heart issues fixed, my specialist is recommending we try Venetoclax with Rituximab.

[Panz in reply to TimHB]

I had the extreme headaches and joint pain but both were relieved by dinking coffee. One cup of black coffee work so fast it was unreal. The specialist pharmacy told me to drink 3-4 sips of coffee and if I did t drink coffee the. They would be happy to send caffeine pills with the Calquence.

Give it a try! Good luck!

Panz 🙂🙏💕☘️

[TimHB in reply to Panz]

Yes, I agree! Coffee is my savior in the morning and helped reduce the bone and joint pain from Ibrutinib and Acalabrutinib.

[DawnRedwood in reply to Panz]

You are so right! When I got migraine headaches I was told to try to keep caffeine in my system to lessen the pain.

[Vlaminck in reply to TimHB]

Little digression here but interesting about your PVCs. I went through a period where I saw a cardiologist for my PVCs (this is 13-14 yrs ago) -- trigemy (3 in a row), bigemy, including both while in the doctor's office. No one acted like I needed hospitalization. My regular doc acted like no big deal and suggestion seeing a cardiologist, who would ask me, as if he was zeroing in on the cause, "are you anxious?" I would tell him, yes, I'm anxious --because of these PVCs. He sent me home with halter monitor that measured like 23K in 24 hrs, and he called shocked over results, gave me atenolol which I used for a little while. They're gone now, not sure why. My point is wow -- what a contrast in reactions! From virtually nothing to (you) hospitalization. (Not yet have CLL so wasn't on treatment).

[TimHB in reply to Vlaminck]

With both my hospitalizations, I woke during the night feeling like I was having a heart attack - heart pounding through my chest, heart rate running as high as 190, then plunging to the 30s, dizzy, nauseous, pain, all the symptoms of heart attack. I got to the hospital and they threw me on a gurney and ran me into cardiac critical care with paddles ready. All very dramatic. Was in for a 4-5 days each time while they got me into normal sinus rhythm. I'm steadier now on Flecanaide and off Acalabrutinib but a 30-day heart monitor showed I still have PVCs and bigeminy. Saw my cardiologist yesterday and he's recommending an ablation - and if that doesn't work a pacemaker. I don't want either! 😬

[Vlaminck in reply to TimHB]

Oh, wow, how terrifying that had to be! I don't know if this is helpful, but somehow my couple years of pvc storms have gone away. I know alcohol could trigger them. After a lot of research, I did make a concoction I would take of arginine, pantothenine (B5), copper, and potassium which seemed to help. Do recall the copper being somehow connected -- if by chance you take zinc, you might well be deficient in copper, even from taking cold-eze, which I believe can be connected to arrhythmia. Can't recall what literature led me to the rest but I kept a packet of these to take on trips, etc., just in case. Don't think it would hurt to try them (esp the copper and arginine) for a few days and see how that affects you. Good luck.

[neurodervish in reply to Vlaminck]

Sadly, it's a well documented fact that women's health concerns are generally taken less seriously than men's. "There’s a dirty little secret in health care that doesn’t get the attention it deserves: Female patients are continuously gaslighted about their physical and mental health" northwell.edu/katz-institut...

[HopeME in reply to neurodervish]

Please don’t start with this stuff. No one in this thread suggested there was any bias.

Best,

Mark

[MaxSmart]

I also had extreme headaches. People told me to drink more water and drink more coffee but nothing took it away.

[kaayo in reply to MaxSmart]

Take 2 acetaminophen with the Acalabrutinib, until the body adjusts.

[louise66]

Hi,

I also started alcalabrutinib Feb 2022, and have had the early morning headaches. I've taken paracetamol plus (with caffine) and also had a coffee for the really bad ones and it does seem to work.

I've been amazed how quickly my largest nodes have shrunk.

Back to see my consultant tomorrow so it will be interesting to see how he feels it going.

Take care

Louise

[BallyB in reply to louise66]

I had the same experience with rapidly shrinking nodes, from huge to normal in four days.

[Walkingtall62]

I had headaches too, which ceased once allopurinol was stopped. Felt much better all round. Not perfect at first but happy yo get rid of the headaches!

[kitchengardener2]

I started Acalabrutinib last August. I was given Allopurinol for 3 cycles. I had morning headaches with this but strong tea cleared it up and I haven't had them since the Allopurinol was stopped. I also have Aciclovir and Co Trimoxazole. No other side effects and so far results are good.

[spanish36]

Hi I started taking 2 capsules daily of Acalabrutinib in a clinical trial 20 months ago. My last review indicated continued positive progress as my key blood markers move closer to normal. Fantastic!

During my first three months or so I also suffered headaches, nausea and generally feeling unwell. In fact I considered ceasing treatment.

However adverse symptoms largely dissipated into month four. 20 months later I get an occasional early morning headache but thats all.

My team recommended taking one caffeine pill to relieve my headaches. I still take one caffeine pill for headaches and, for me, it works. I am not a doctor so please check with your own medical people about using caffeine pills.

Anyway my Acalabrutinib journey has proved well worth putting up with the difficult side effects of the first few months.

I hope this helps. Good luck.

[BallyB]

Try coffee for the headaches, stopped mine in an instant.

[spi3]

My husband started Acalabrutinib beginning of March - they advise him to drink 3 liters of water a day to help minimize side effects -- he has and it has! Only a slight headache once and awhile at night (not often) though.

[netspert]

I was on Allopurinol last year - for six days, until the itching rash kept me from sleeping. I'm still having issues with swollen ankles. Since then, I have been put on Imbruvica, which I seem to tolerate.

[Jacksc06]

Hi. I am on Imbruvica i have regular headaches and muscle/joint pain. Just wanted to say hello and welcome to the family. Best wishes.

[kaayo]

Just like when you see a migraine coming on, get out in front of the headache by taking 2 acetaminophen with the Acalabrutinib for a few weeks, until the body adjusts. Also, in my info pack, it says to not drink much of anything that dehydrates you (caffeine & alcohol). Just drinking more water to try and compensate will only make you pee more. You'll still tend to be dehydrated if drinking much of those two.

[MorganNL]

I started Acalabrutinib on 14 Feb 2022 and I must say, I have been fortunate. I had mild headaches for the first few weeks, but now they have all but disappeared. I also drank lots of water throughout the day. Also had a petechial rash on my legs for a few days, occasional dizzyness and funny enough….some bizarre dreams🤣. Haven’t heard of dreams being a side effect? My first blood results today are showing an improvement in my blood values 👏👏. So far, so good!

[Haggar]

I have recently started my treatment on Acalabrutinib. My headaches were so bad. Then I took iced coffee and my headaches went. The problem I’m having now is aching legs. Feeling a little nauseas. But am managing. It could be a lot worse. Try the iced coffee. It’s helped me. Good luck . Seeing my Heamatologist tomorrow. For blood results.

Shona