Just started Calquence

[Westie11-]

I was feeling great before starting this medication, going about as normal and doing housework etc now dread taking the tablet in the morning as thats when sickness and headaches start. Not too bad at moment as I m able to write this but yesterday I just sat around all day ill about 4pm, couldnt even pick up book to read!!Did anyone else feel like this and wish they hadnt started?

[AussieNeil Partner Administrator]

Are you aware that headaches are fairly common in the first few weeks with Calquence, but are manageable with caffeine and perhaps Tylenol?

With respect to the nausea, speak to your consultant about antinausea medication? You need to be proactive and take the antinausea medication beforehand. You can also experiment with taking your Calquence with and without food.

Hope this helps you adjust to taking Calquence.

Neil

[CaptRon1976 in reply to AussieNeil]

hello, I started Calquence 10 weeks ago. The first 2-3 weeks I felt dizzy and had significant headaches after taking the morning capsule. Two cups of coffee made it much more tolerable and by the third week the headaches were minimal and the dizziness was to. Now at week 10 I have no headaches and no dizziness.

I just came back from seeing Dr. Davids at Dana Farber yesterday. My spleen is now normal size and in three weeks it has retreated from clear down in my pelvis to back under my ribs where it belongs! All my lymph nodes are now gone or not palpable. My anemia is slightly improved and my ALC which initially doubled from the CLL cells leaving the nodes and going into the blood stream have now halved which means that half of the CLL cells that were hiding in my nodes have now died and are gone.

Your medicine will likely help you a lot. I would suggest that you stick with it for a few weeks to see your side effects diminish and then get the benefit from you treatment.

Sorry, I realize that I replied to Neil rather than Westin. I hope you read this.

Ron

[AussieNeil Partner Administrator in reply to CaptRon1976]

Ron, Thanks for sharing your personal experience confirming my reply to Westie. The poster gets notified of all replies to their post, so will read your reply to me.

Neil

[CaptRon1976 in reply to AussieNeil]

thanks Neil

Ron

[Hidden in reply to CaptRon1976]

Great news CaptRon1976!!!

😊

[Westie11- in reply to AussieNeil]

Thanks AussieNeil. I think I was being naive and living in hope that I would be the one to not get any side affects. However after posting on here I spoke to the nurse who I can ring any time and she arranged for me to get a stronger anti sickness tablet so I hope that will help tomorrow. I did try the before or after for taking the medication but it made no difference. Everyone suggests drinking coffee and as I only previously drank de-caf I have now bought normal coffee. So will just keep persevering and hope symptoms dont last too long.

[uihwki in reply to Westie11-]

i experienced severe headaches when I started acal 4 years ago. I'm not a coffee drinker so my oncologist recommended Excedrin Tension Headache. It contains caffeine but no aspirin. It worked wonders. Like others have said, the side effects went away in several weeks. With acal my life returned to normal (pre CLL) and I seldom think about my CLL.

[LeoPa in reply to Westie11-]

can you take caffeine pills? Instead of coffee.

[Westie11- in reply to LeoPa]

tthanks I am fine on coffee.

[LeoPa in reply to Westie11-]

me too!

[Panz]

I have read the other replies and they are spot on. But I simply want to encourage you to hang in there as this is a super duper med. I will be totally honest with you I wasn’t free from my side effects completely for six months. I am now just finishing my 9 months and I haven’t felt this good and had such great labs in the 33+ years of having CLL!!! This is my third line treatment. My biggest issue was the headaches but was pleasant surprised just how quickly coffee took care of that within minutes. That gradually faded. All other side effects were minor and I felt I could contribute them to my rather low platelets count that was 70 at that time and thus I had bruising on arms and mostly upper thighs plus I had blood blisters in my mouth a lot of the time. Those started out the size of a regular marble but upon eating they would break and disappear in a couple of days. The size gradually appeared smaller and smaller until they were only about the size of the head of corsage pin and the frequency became less and less and my platelets now hang around 90-100.

This is a very friendly and informative community and we are here for each other and we fully realize we are all different but on the same journey! Please keep us update on how you are doing. All the very best to you!

Panz 🌈🙏🙂☘️👍💕

👻🎃💀

[Westie11- in reply to Panz]

Thank you, wow cant believe you have had this for 33yrs, 11 yrs ago I was first told. Again thanks for sharing your journey and agree this is a great site to be in for support

[SofiaDeo]

I gave my BTK about mmm 6-8 months before deciding the side effects weren't going away. It's tough, but hang in there. I used to tell myself, even though the side effects were pretty awful, they were nowhere near what standard chemotherapy usually does. That helped put it in perspective a bit. Nausea, but not puking for hours; weakness, but not inability to even get out of bed, hair thinning, but still there, etc. etc. You're not stuck hospitalized or in a clinic for hours all day, you're at home. Hopefully you too will follow the path of "the side effects went away after a few weeks".

[helenolton]

I know how you feel, I felt like a child, I didn't want to take this pill, because I felt badly after taking it. It's my 6th day, and I am finally not scared of it. I have this timed pretty good now Thirty minutes after the pill my pain starts up, slight headache and terrible pain in both knees and both arms and ringing in my ears it usually last for 3 hours. after than I can be normal. Starts up again after second pill. My white blood count went up real high, but with the support of this group they reassured me that was expected. If I did not reach out to this group, I would have not been sleeping much at night, worrying that the medicine was not working.

[helenolton in reply to helenolton]

I just read your article about your enlarged spleen, my spleen is severly enlarged . The Calquence should bring that down. That's why we have to stay on this medicine. The spleen can burst and then were in trouble. I am happy that Calquence can help with the spleen. At least we do not need surgery to have it removed.

[Westie11-]



Thanks after reviewing my scan the spleen wasnt too big so treatment started on blood count and a few enlarged ymph nodes which were detected through scan. I find my problems only happen with 1st tablet of day. 2nd tablet is fine. Thanks to this group I can see we are all in same position and it will take time. I have now been prescribed a stronger anti sickness tablet so will see if that helps.

[Walkingtall62 in reply to Westie11-]

hi, I see you have tried before or after food. I had a possible anxiety reaction after my first pill, and since then have always taken them in the middle of a meal. Seems to work for me. All the best

[Westie11- in reply to Walkingtall62]

Tthanks will try that today.

[Westie11- in reply to Walkingtall62]

Took 1st tablet this morning in middle of breakfast, then an hr later took anti sickness tablet and I have been pain and sickness free all day!! So hoping tomorrow is the same. Thanks for tip.

[Walkingtall62 in reply to Westie11-]

oh that’s brilliant. Thanks for letting me know. We all react differently so one never knows. Good luck for tomorrow. Best wishes

[GAVIOTA in reply to Westie11-]

which anti-sickness tablet do you take?

Thanks

[Westie11- in reply to GAVIOTA]

it is Ondansetron 8mg. I have been taking it 1hr after I take Calquence and have now had 2 normal days. I only take it morning as dont get any side affects with 2nd tablet. No sickness or headaches.

[GAVIOTA in reply to Westie11-]

Thanks a lot

[Handley in reply to Westie11-]

Hi Westie and everyone. One thing that has emerged from your post is that you really are not alone trying to cope. I've just completed 4 weeks on Calquence and have the same blinding headaches, blood blisters in mouth, fatigue etc etc, but the message is clear - we have to stick with it. Already my blood numbers are improving a bit and as they improve, I'm very optimistic that my symptoms will too. It was a great idea to write in to the forum as we really can encourage each other! Best wishes - Handley

[spanish36]

Yes westie11 I did. The first several weeks provided nausea, headaches and generally feeling not great. Perhaps like you I began to wonder whether the discomfort was worth being a patient in the clinical trial, at that time.

Two months later the worst was over.

Two years later my numbers have fallen close to the normal range and I feel great.

Although prior to my inclusion in the trial life was not great at all. Constantly fatigued. Frequent saturating night sweats. Nausea and every day a struggle.

For those reasons I quickly noticed my improvement after a few months of taking Acalabrutinib.

Today its no worse than taking my blood pressure tablets.

I reckon its well worth persevering although its not easy at the beginning of treatment.

Good luck and hope your side effect symptoms dissipate shortly.



[kitchengardener2]

Good morning, after 15 months of Acalabrutinib/Clarence, I can only report that I feel in incredibly good health. I only had the headaches for a the first two or three weeks and as Neil says managed with strong tea (I don't like coffee early in the day). I had Allopurinol for the first three months, this helps the kidneys deal with extra rubbish. I still take Aciclovir and Co Trimoxazole.

I was advised by my CNS to drink lots of water to flush things out and I do try to do this. If I don't drink lots, I notice my urine is darker and sometimes cloudy.

My blood numbers are within normal ranges and hopefully will stay that way.

Good luck

[Direstraits12]

yes, but it didn’t last long. Totally worth it.

[Leftwall]

Definitely stick with it Westie, if you can. Been on Calquence exactly 2 years and the results have been incredible, quite literally life changing. For the first 3 months I suffered headaches (as everyone seems to) and fatigue, although to be fair, my haematologist said I was pushing myself too hard physically (being a tree surgeon) and easing off a little certainly helped. Saw my haematologist a week ago and lab results were in his words "fantastic". Very best of luck to you.

[Westie11- in reply to Leftwall]

Thank you . So far and it's now 2pm I am having a much better day. Not sure if it is the stronger anti sickness pill or that I took Calquence during my breakfast rather than before or after. It's one disease and same treatment but everyone it seems responds in a different way. So again it will be wait and see how my blood levels respond. You will be delighted with your results and best wishes for it to continue.

[JIDD]

Westie11 and others: I started Acalabrutinib (Calquence) on April 22 this year and have had zilch side effects so far. Its weird how reactions vary so much (research needed, medic scientists!). I know this is no consolation to Westie11 and others but I thought it useful to report a very different (non-)reaction

[Westie11- in reply to JIDD]

yes it seems everyone reacts differently to side affects and how they improve. Thank you for replying.

[BallyB]

Give it a few weeks and you will be fine. Coffee stopped my early headaches in minutes, when I first started the drug. My huge nodes shrunk in only four days, so stick with it.