Calquence headache question

[GL64]

My wife has just Calquence and has”waves” of light headaches in the front part of brain. Her question to others taking calquence is the front headache area the common place for headache?

She has had previous brain bleed and we are

Always mindful of headaches and if related symptom of previous stroke. ( Carnavous hemangioma) thanks for input

[Dogmom-US]

YES YES YES!! I've been on Calquence for just about a month and the first few weeks the headaches were constant (along with chronic fatigue)! I know exactly the "wave" you are talking about and for me, it too was in the front. Kind of temple to temple across the forehead. I highly recommend Excedrin Tension Headache!! It is acetaminophen and caffeine and was pure magic in controlling the headaches. At first I had to take it every 6 hours but I'm now down 1 regular Tylenol and one Tension Headache mainly at night. Not sure why but the waves for me seem to be worse over night.

I wish her the best of luck and hopefully she finds some relief!

[GL64 in reply to Dogmom-US]

Thanks for responding so quickly. This is comforting knowing headaches of this type are from calquence (others having same symptom) and not trying to guess if it is related to another problem of the past (brain bleed).

Thanks and hope you continue to gain the lifestyle and health you desire through treatment. We are week one and hope to fly out to NC for a marriage retreat but still somewhat undecided due to side effects worsening or new ones....do you have pressure in abdominal area at times? My wife is only taking 1 pil per day and has a follow up appt on the 26th to determine if she can go to the full 2 per day dose.

Thanks again for sharing..

with you

[Dogmom-US in reply to GL64]

I did not have abdominal pain, mainly fatigue and headache. I actually just did a write up last week on my experience as there is not much on here about acalabrutinib. You can read it here:

healthunlocked.com/cllsuppo...

I did a few days on the once a day then moved to 2x a day. I did NOT do well on Imbruvica (massive joint pain) so we waited to see if that happened on the acala before increasing. When it did not we went up to the full dose after about 4 days. Fatigue and headache were really bad for the first 2 weeks then have slowly gotten better.

Be sure to talk to her Dr before you travel. I know mine doesn't want me on a plane right now. Immune system is already compromised from the CLL and while she is adjusting to the drug she could be even more compromised.

Really hope she starts to feel better! It stinks when the treatment can make you feel worse than the illness! But I do think it will get better, hope it is sooner rather than later!

[GL64 in reply to Dogmom-US]

Thanks for info and advise. Doc knows and we have clean zone process when flying. She has neutropenia for 4yrs and has traveled by air to Japan and Germany (grandkids 👍😀)

[Lhgranny in reply to Dogmom-US]

Thank you so much for reporting your experience and what helped you. I thought I was going crazy. The doctor keeps telling me that this drug is “generally well tolerated”….a term I’ve come to hate. I’m in a clinical trial for this drug for MALT Non Hodgkins Lymphoma and the study nurse tells me that NONE of the other patients in the study have had the horrible headaches at night! I tried the Tylenol Tension/Regular Tylenol last night and slept more hours in a row than I had slept in weeks! I’m in week 4 and am praying the side effects will subside. Thanks again.

[Fulart in reply to GL64]

As others have mentioned, the headaches are typical side effects of Calquence. I use acetaminophin with caffeine to control them AND I drink extra water. When I got my first bottle for this med it said to drink a "full glass of water" with it. Couldn't hurt to drink 2 full glasses of water with it - or as I often do, drink water, then herbal tea. The headaches were more frequent in the beginning, but as my body adjusted to the med, I get fewer headaches. Sometimes I do have stomach cramps but they are not severe. Usually I can attribute it to gas or constipation. I have changed my diet. I no longer drink as much coffee as I used to. It seems to bring on stomach cramps. I avoid gassy foods like broccoli, cabbage, beans. I use Benefil once a day to make sure I have enough fiber in my diet. It's worked like a charm for me. These are all just suggestions though - things my body has agreed with.

[kimiD]

When starting Calquence last month I had an unbearable headache for the first few days. Stopped taking it after day 3 until the doctor returned my call. They put me on a reduced dose at 1 pill per day. Have had a few mild headaches since, all on the front left side of my head. Saw my primary care who ordered an MRI just to be safe, thankfully it came back normal. After being on ibrutinib for almost 3 years I guess my primary care just wanted to be cautious and have a look. I guess with CLL we can't be too careful. The Excedrin Tension Headache really did help after the dose was reduced. At my follow up the specialist asked if I was able to tolerate the headaches for now and discussed other options if I was not able to stand it. I mentioned going back on ibrutinib despite the serious joint and muscle pain. He asked if that was worse than the headaches. My response was, "I'd rather have an aching body than an aching head. At least I'd be able to think clearly". We all have different sensitivity to medications. Sometimes our choices are limited and must choose the lesser of two evils. I truly hope your wife gets some relief soon.

[bhayes84]

My headaches finally went away after two and a half months.