My husband was diagnosed with CLL back in February. We were completely taken by surprise and our lives were turned upside down. Thank god he did very well on his initial treatment of Prednisone and Rituxan. That lasted 4 weeks, then we moved on to the oral med of CALQUENCE, which is how I found this site. My husband after 1 week experienced severe headaches. Not sleeping, not able to each, nauseous. We had the CT scan done and most recently an MRI of his brain. Needless to say it has been a very long 2 weeks. All scans were clear and he tired Tylenol, Excedrin Migraine even sinus medicine. The pain has been really bad. It's been 2 weeks now since he has been on it and we had hoped the pain would go away, as that is what I've read. His doctor started him out with 2 pills a day, but now that the scans are clear and we know the paid is caused by CALQUENCE he said to go to 1 pill a day and see if it makes a difference.
Just wondering if anyone out there currently is going through any of this? He is much better in the evening than in the morning when the pain seems much worse. It's just nice to know you are not the only one.
If anyone can shed some light on this, I would much appreciate it.
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Orangelemonaide
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Mary,So appreciate all of your information. He drinks all the time, but maybe not enough? This is a battle, but we are going to back down to 1 pill a day and see if that makes a difference. With all that we have been through these last 2 weeks any relief would be wonderful. It certainly isn't easy for any of us. Many thanks.
I experienced headaches and rash with my Calquence. Tylenol with Caffeine and strong coffee helped my headaches. Mine also were worse in the morning. My experience is that the headaches waned after about 2 months but with the rash I also went thru doseage adjustments. From 2 a day to 1 a day, then alternated 1 a day, then 2 a day, did that sequence for several weeks and then started back on 2 a day and so far so good 💪🏼! I hope your husband’s side effects lessen with the one dose. I agree on the water intake. I take a full glass 6-8oz with every dose and try to drink more during the day. When we start these medications our bodies are not used to it and therefore we go thru an adjustment period. Especially if the Calquence is working and his WBC is going down fast, that is also a big change to his body. I hope it will all work out for him. The first 2 months for me were hardest, I am in my 4th month on Calquence and everything seems to be leveling out nicely. Stay 💪🏼 Good luck 🍀
I started Calquence with one pill a day. After almost two years, no symptoms except for general fatigue and not being as strong overall as I was before I started taking meds for CLL. But no extreme problems. Have stayed in remission on one pill a day. I drink an entire glass of water with the pill. I think too much water could perhaps cause headache...just guessing. I drink one or two coffees a day. I take my Calquence around midnight, it varies sometimes, at 1.30 AM, depending on when I go to sleep. Possibly worry causes headache. Has he tried anything that would relax him, such as klonazapam. I take a half of one when i feel anxious, but make sure I do not take them every single day, so as not to become addicted. Has he taken his blood pressure? I found out that i had tooth pain whenever I got Afib, or arrhythmia, which might be from the acalabrutinib. But relaxing and avoiding salt and food late at night solvethis problem. These are just my experience, not sure if any help for you. After time, symptoms people have at the beginning go away. Hopefully that will be the case with your husband.
I so appreciate all of your comments and suggestions. This site has made me feel so much better. I'm sure you will be hearing more from me as my husband moves forward. God Bless,
I believe headaches are a known side effect, if they aren't resolved he could probably be switched to Ibrutinib, but that has side effects of it's own. I would rather be on Ibrutinib than go to long on reduced (one pill) of Calquence.
I'm on Calquence and the headache is usually fixed with a good cup of coffee. Drinking lots of water is important with this drug. I would be interested to see how he gets on with 1 pill a day. My bloods normalised after 4 months on Calquence (Acalabrutinib) and would love to know if its possible to go to 1 pill a day.Good luck with this drug and hope the side effects subside.
From what I understand the reason for doing 2 pills 12 hours apart is because the half life of Calquence in the blood is shorter than the half life of Ibrutinib which is only given once a day. Btk inhibitors need to be in the blood all the time else the CLL may become resistant to them. So if Calquence has a shorter half life and is only given once a day the CLL may not be controlled regardless of dose.
Exactly John! Given it's not uncommon for specialists to recommend going to one capsule a day to manage side effects from second generation BTKi drugs, it would be preferable for the manufacturers to also provide half dose capsules, so twice a day dosing could be maintained. The capsules are designed to release the drug at the optimal place for absorption in our digestive system, which is why opening the capsules to split the dose is not recommended.
Yes, it would be great if they could create half sized pills. I would feel safer, as am taking only one.
One haematologist suggested that I could try taking the one a day for two weeks and then two a day for two weeks or for one week for each dosage. It seems that a lot is experimental at this stage. I will talk to the calquence people as they directly deliver pills to me, and ask if that has ever been discussed (half sized pills).
John, Thanks for that; I hadn't realised why the twice a day with a 3 hour "window" was so important with acalabrutinib. I try to keep to my times pretty religiously. I have been lucky in not having serious side-effects; a strength 11 ristretto in the morning and allopurinol (100mg) deals with the gout, which is only in my left foot.
I am going to see if I can find out about this possible resistance if I can reach a clinical trial director in Toronto who I used to talk to. And if I do will report back.
I am on one pill a day, almost two years. My blood counts are all normal. Before this I was on ibrutinib, and I took a break of 6 months, which did not change my blood counts. So it might be possible to take one a day for others too but we are all different.
Wow - this is a lot of great information for all of you. Here is the latest from his Dr. - Do not go on 1 pill - STOP taking it for 1 week and see if the headaches go away. He has tried the caffeine route and everything else you all have mentioned. His doctor wants him to stop for 1 week? I'm concerned, but I am not the doctor. Let me ask this of all of you - those that have experienced the headaches - do they ever go away and if so how long? This has been going on for exactly 2 weeks yesterday - to see my husband is pain like this is heart wrenching. He needs relief. I will certainly let you all know if he sees any change in the week.Thank you all for sharing. It means a lot.
Neil - when I tell you everything, I mean everything. My house looks like a pharmacy!! I went out today and got him Excedrin Tension because someone mentioned it. Thing is he is or has been doing well (blood number wise) on the Calquence. We really don't want to switch to another drug - if someone would say give it another couple of days and the pain will go away, he would. I'm getting scared, but this is what his doctor said to do and I have to say we have a good team? I really wish there were a doctor we could consult on this site - thank you. I will keep you posted.
every month when the pharmacy calls , the pharmacy nurse tells me i need 2 quarts of water per day and drink a full glass with the calquence . i only weigh 140 pounds so 2 quarts is plenty for me .. i have to work at it to drink that much water ... the coffee recommended by the great people on this site helped with the headaches . i don't normally drink coffee . but i drank it fresh brewed , organic and black as night---- only a cup in the morning and another in the afternoon . the headaches slowly subsided after a month or so. i decided i would pray more and worry less and that helped a lot also . blessings , james
When I got my rash from Calquence my Dr stopped it for one week while I took a steroid dose pak. This seemed to give my body relief long enough to ‘give it a break’ Ideally taking the full dose of 2 is optimal but sometimes adjustments are made in the interim. Even with the dose adjustments my WBC still continued to come down. Hang in there a little longer if you can 💪🏼
I was prescribed Acalabrutinib (which is also known as Calaquence) in August last year. I was told to expect headaches. I did experience early morning headaches, and following advice on here, I found strong coffee/tea soon cleared them. I was prescribed Allopurinol for the first three cycles and this helped. Hope your husband soon feels better x
Hi all the other replies are common to those on Calquence, I had to take 3lt of water a day (5.2 Pints) for the first 5 days and then down to 2lt from then on every day. I had headaches in the morning for the first 4 weeks at the start but coffee does help although my headaches weren’t severe, hope this helps
Yes, I had the same headaches, unbearable especially because I was not supposed to take aspirin (Excedrin) or ibuprophen. My Dr said to go to 1 a day and I have been for a year now and my CBC is returning to the normal range. 1 a day works great for me! Best to you guys.
I also had terrible headaches when I started calquence. I reduced to 1 a day for almost 6 months, then went back to 2 a day. I am now well and headache free . Good luck
John, This may be the next road we go down - some people can tolerate more than others. No one person is the same - I also think that depending on a person's weight should determine the dose, but I'm no doctor! Thank much
When I started Calquence I to had bad headaches. My Dr said drink some coffee. I'm not a coffee drinker so I tried some diet coke. After a day or 2 of having a small glass of diet coke, I haven't had a headache because of the drug. That's what works for me. Good luck
I can truly sympathize with your husband, as I had the same problem with Acalabrutinib. After 6 months of daily headaches despite drinking many cups of caffeinated teas, my doctor gave me the OK to try Zanubrutinib , another BTK inhibitor, and from then on I have had no more headaches. It might be something you could discuss with your doctor. Hope you are able to find some solution to those daily headaches.
I also suffered from extremely painful headaches and nothing helped until someone recommended Excedrin Tension. It has Acetaminophen and caffeine. I would wake in the middle of the night with them, so I took it before I went to bed and also took melatonin to offset the caffeine. Hope you find a solution and he feels better soon!
Hello, sorry to hear that your husband is having headaches with the Calquence. When I started Calquence 2x day, I had monster headaches. It felt like someone was driving an ice pick into my brain!!! I dropped down to 1 pill a day( morning) and the headaches went away. Stayed on 1 pill for a month and then finally got the nerve to take the second pill a day. Amazing no more headaches for me. The doctor told me that my system just had to get use to the medication. I was actually in the clinical trial at Dana Farber. On Calquence, Venetaclax and also Obinutuzmab (infusions). After about 1.5 years on these medications, I was CLL free, or at least they couldn’t detect it anymore. I have been that way for about 2 years now. I hope it all works out for you.
Pete, OMG my husband is getting those same kind of headache - he keeps saying it feels like an ice pick in my temples and in his eyes. He drinks constantly and does the caffeine and all the other things that seem to help others on this forum, but not him? His doctor wants him completely off the Calquence for a week - This morning he woke up up with that morning pain yet again - (bad in the morning), but it slowly began to dissipate. We are hopeful that 1 full day without may make a difference and then start back on one a day. You have given up hope - everyone has. Thank you so much.
Hello Orangelemonaid I was just wondering while reading your post if your husband has the option of switching to venclexta ,I have been taking it for a year and a half with little to no side effects,nothing against BTK inhibitors ibrutinib etc .. they really work well for a lot of folks ,but if this continues to be a problem you all might want to ask your doctor what he thinks about venclexta for it is a very effective low side effect treatment for us ,just a thought 😊
Well thank you - each day is a challenge for him and for me - at 59 it is hard to see him this way. As I mentioned before he has tried the coffee, the water, the Excedrin - nothing is taking this ice pick pain from his head and his eyes especially in the morning. We will certainly ask his doctor. This just may not be for him - thank you
You are very welcome!!! CLL can be very challenging ,bad headaches are no fun and sometimes disabling I will keep you all in-my prayers for a good treatment that is tolerable for him , I am 58 and just about a ten year veteran of CLL and the treatments are getting much better by God’s grace I am trusting Him for a long life and thanking Him also for a good doctors and for wisdom for curative treatments in the near future that will bless all of us !!!😊😊
Pooldude my name is Carolyn (am I allowed to say that) - You have give me some hope. I pray non stop that he get back to being the way he was. His last pill was Friday morning at 830 (April 8) Still waking up with the headache - pain has yet to completely go away for an entire day. We have tried everything. He gets up constantly to go to the bathroom - yet another issue I have to address with the group. Not sure where this came from. This has been life changing for us, as I am sure it has for you. I worry what happens next - not sure Calquence is for him? With the help of God just as you said, I pray that we can come out the other end. God Bless you and keep you well.
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