Side effectsof treatment

[Westie11-]

I have been told today that I will be starting treatment after my next blood test in 3 weeks time. I have been given a booklet to read first,Welcome to Calquence (acalabrutinib)

Has anyone been in this and did they suffer with side effects from it? There seems to be so many listed that I am a bit concerned as to how I will feel once started. Thanks

[Shepherd777]

I read numerous posts before my wife went on Calquence just over 2 months ago. The most frequent issue others shared was headaches that might last a couple of weeks or maybe a month. Many many of them said a cup of coffee took the headaches away each morning. My wife cannot use coffee, but she found one Tylenol did the trick for her. Headaches were no longer an early morning occurrence after about 2 weeks.

[Westie11- in reply to Shepherd777]

Thank you, just have to hope I don't get severe headaches

[Shepherd777 in reply to Westie11-]

My wife never had severe headaches on Calquence. They were just a nuisance that one Tylenol made go away each day and then after about 2 weeks never returned.

[Kvb-texas]

Howdy Westie11 - I have taking Calquence for nearly a year with absolutely zero side effects. When I started I had very swollen lymph nodes all over as well as a swollen spleen. The swelling was gone by the first week. Most all of blood results are now in normal range as well. Hope you have good results from your treatment as well.

[Westie11- in reply to Kvb-texas]

Thank you, sounds like the treatment has been very good for you.

[Indolent]

I've been on acalabrutinib for over a year as part of a combination therapy on a clinical trial. Initially, I had headaches which resolved in a few weeks. I also experienced some afib, which abated quickly as well. Later, I developed weird rashes and lingering myalgia. In working with my doctor, we eventually lowered my dosage from 200 mg, to 100 mg daily. This has worked much better and I'm experiencing minimal side effects. Best of luck in your treatment.

[kitchengardener2]

I was never given a leaflet, just told that I may experience some bleeding and bruising. I do have a Clinical Nurse Specialist who answers all my questions. Don't read too much into side effects.

[spanish36]

Hi Westie11

I commenced treatment in a Calquence trial using Acalabrutinib two years ago.

I just had my cycle 24 blood tests, review, etc. Excellent results. I am not far above the normal lymphocyte range now at 5.3.

Before beginning treatment I was in a bad place with extreme levels of fatigue, heavy night sweats and nausea. Not good at all. Life was miserable!

I no longer suffer night sweats or nausea and fatigue levels have reduced to near zero compared to my bad old days.

My Life is great thanks to Acalabrutinib in my Calquence trial. And by the way my clinical support team are fabulous.

Like you, when I read that hand book, plus the other notes which listed risks and potential side effects I came close to chickening out.

During my first two months I suffered from headaches, nausea (which I already had anyway), and occasional bouts of loose bowels, but no vomiting.

I have found the entire experience nowhere as bad as I thought it might be. In fact after my first two months it has not proved any concern to me at all.

I simply take my capsule of Acalabrutinib in the morning and the other at night. And present for blood tests, scans and reviews as required. Easy peasy:))

We are all different as to side effects but the people I know in the Calquence trials have enjoyed similar experiences to myself.

I highly recommend getting going as my results are proof it's well worth a bit of discomfort during your first couple of months. And as I mentioned my side effects were not bad at all.

Go for it. I wish you every success in becoming essentially CLL free in the not too distant future. Way to go:))

Cheers

Ross

Spanish36

[uide3095]

Hi Westie11,Like most on here I had a few headaches off and on for the first couple of weeks, nothing else, I was told to drink 3L of water a day for the first week and then 2L a day which I have continued, on my 8th 4 weekly cycle now, Lymph nodes are now normal size and blood returning to normal stats too.

We are all different, just be aware of side effects if you have any other conditions but most seem to be getting on ok with Acalabrutinib

There are certain fruits to avoid and other drugs such as Ibuprofen and those for reflux and gastric type problems people have but your Consultant should go through all these with you, but if they don't make sure you ask. Good luck and safe journey

Will

[Westie11- in reply to uide3095]

Thank you for such positive feedback. Did you have to take paracetamol or similar for the headaches? I am thinking I might have to cancel a planned trip until these side effects subside. On bright side looking forward to having more energy.

[uide3095 in reply to Westie11-]

Hi you can take paracetamol but I didn’t have to as the headaches didn’t last long and were only in the mornings. I went on holiday with my tablets and just carried on as normal and intend to do so again in September when I go to Sorento for a wedding. I have felt fine all the way through even when I had large lymph nodes in my neck and groin and am back at the gym in the mornings when it’s quiet now as well, I just increased my precautions when Covid spikes. Mentally is was a battle at times but trying to be positive and get on with our lives is the best way but that wasn’t always that easy at the start 👍

[Westie11- in reply to uide3095]

Thanks again, feeling more positive about starting in the treatment now.