Has anyone had experience taking Calquence once a day every other day?

[Zsuzsika]

I had too much side effects from twice a day Calquence. My blood tests are almost in normal range. My doctor wants me to get back to taking it once a day. I would like to take it once every other day.

Has anyone tried that? Thanks for your input.

[AussieNeil Administrator]

Hi Zsuzsika,

The reason your doctor wants you to get back to taking Calquence daily, is that Calquence has a short half life, so after 2 days, you'll have very little Calquence in your blood. That puts you at risk of having insufficient management of your CLL to keep it under control. Your blood counts may stop improving and may even worsen, plus you risk the development of resistance. Since you are having excessive side effects from Calquence, ask your doctor about switching to zanubrutinib/Brukinsa. It's also a second generation BTKi drug and you may do better side effect wise on Brukinsa. It's approved for MCL by the FDA and hence can be prescribed off label for CLL in the USA. Brukinsa is one of the drugs recommended by the US National Comprehensive Cancer Network (NCCN) to treat CLL.

To get technical, Calquence is converted to a metabolite which achieves a peak serum blood level about 1.6 hours after you take your Calquence capsule. See the section Pharmacokinetics and metabolism of medicalnewstoday.com/articl...

The Calquence metabolite has a half life of about 3.5 hours. That means that around 5 hours after you take your Calquence, you'll only have about 50% of the peak metabolite level in your blood controlling your CLL. At 12 hours (another 2 x3. 5 hours), it will be down to around 12.5% of the peak, which is why by then, you should ideally have your second dose for the day. Having Calquence once a day means you have around a percent of the Calquence metabolite remaining in circulation to inhibit your CLL. If you have Calquence every 2 days, there's a negligible amount in circulation.

Neil

[Zsuzsika in reply to AussieNeil]

Thanks for the information. I will take it once a day.

[AussieNeil Administrator in reply to Zsuzsika]

If you find the side effects too much, do explore zanubrutinib. A significant driver for why we have 14 CLL BTKi drugs in trial or approved is because a concerning percentage of patients quit taking ibrutinib, because they couldn't stand the side effects.

[CycleWonder in reply to AussieNeil]

I really appreciate your detailed explanations of the logic behind the dosing. Thank you.

[Kwenda in reply to AussieNeil]

Acalabrutinib dosing

I think the approach for most doctors is to give the full recommended dose so long as its tolerable.

Acalabrutinib may been through clinical trials to determine the optimal dose, BUT FOR WHAT SIZE OF PATIENT..??

My argument is that not everyone is 200lbs or 91 kg…

It is important to remember that the minimum dose for total inhibition of BTK is 2.5 mg/kg. Anything above that is safe, but carries the risks for ever more intolerable side effects.

As I understand it, the acalabrutinib pills are 100mg to be taken twice a day.

Surely we need 75mg or 50 mg pills or capsules.

Still to be taken twice a day to maintain the correct blood serum levels

Thus to allow for smaller women or men.

[Unglorious in reply to Kwenda]

I hope that Neil responds to you. I was told that the BTK inhibitors dosage are not given according to your weight, it does not matter how much you weigh. I wonder how true that is.

[AussieNeil Administrator in reply to Unglorious]

Unglorious, in your answer to Kwenda , you are correct in stating that BTK inhibitor dosage is not given according to your weight, but from anecdotal community feedback, it does appear that low weight members are better able to maintain control of their CLL on a reduce weight than those who weigh more. Frustratingly, there have been a number of trials with ibrutinib which endeavoured to determine parameters for dose reduction, but frustratingly, none of them reported the weight of the participants as one of the variables under consideration. There was a significant issue with ibrutinib in that around 20% of those prescribed ibrutinib stopped taking it due to side effects - enough to concern specialists. I've not seen the percentage who quit due to intolerable side effects, only a combined percentage of about 20% who dropped out early due to disease progression or intolerable side effects. Thankfully, we now have much better tolerated second generation BTKi drugs, so it's less of an issue, but there are still quite a few members who have a genuine need to explore dosing adjustments and sadly some that just can't tolerate even a reduced dose.

This post covers the topic of determining a tolerable, yet effective dose of ibrutinib fairly thoroughly. The considerations would be relevant to at least the covalent (i.e. currently approved) BTKi treatment drugs, that is acalabrutinib, ibrutinib and zanubrutinib:

healthunlocked.com/cllsuppo...

Neil

[AnneHill in reply to AussieNeil]

I had my dose of ibrutinib halved and have been ok for a few months. After a break for a gastroscopy my bloods were ok apart from my platelets dropped to 115. I dont understand why.My pain and stiffness are really bad. I am trying to go for walks and my husband says he finds it hard to walk as slow as I do.

I am too nervous to stop the Ibrutinib. Strangely after restarting it after a 2 week break the problems with my wrists and other joints flared up just the way they were when I started Ibrutinib nearly 3 years ago.

[AussieNeil Administrator in reply to AnneHill]

Anne, I wouldn't worry about your platelets; mine are around the same level. Sorry to hear of your ibrutinib challenges. Have you asked your specialist if it's possible for you to switch to acalabrutinib/Calquence? Good to know you've a patient husband and are making the unfortunately painful efforts to exercise. Maintaining mobility is very important.

Neil

[AnneHill in reply to AussieNeil]

I have discussed the pain at length with my consultant. I have instability in my spine which affects my upper body but I cant remember ever being this bad.I have a phone consultation in 3 weeks time. Having so much success with the Ibrutinib working quickly, I realise I am tempting fate changing. If it stops working I will get Venetaclax. I have had cll since 2001 and fcr.

I was told a while ago that acalabrutinib wasnt available. I made the decision to continue and was told I could stop for 1 month but no longer. I am not sure if thats the hospital or drug company ruling.

I will discuss it with my husband and decide about a break and ask the consultant if there is an alternative. Anne uk

[helenolton in reply to Kwenda]

I agree.

[helenolton in reply to helenolton]

sorry replied to the wrong person.

[skunkbay53]

My husband went to once a day and is doing great!

[Unglorious in reply to skunkbay53]

Please explain, what was he doing before? I ask because I just started Acalabrutinib on Saturday and am concerned. Before that I was on Ibrutinib 240 dose. Please reply.

[onu1tadi2 in reply to Unglorious]

hi unglorious. (Scan scares me) was taking 2 out of three ibrutinib capsules a day for about 2 years, then took a holiday for 6 months and started a acalabrutinib although i was still in remission. I started with one pill a day almost 2 years ago. All my counts still normal. Am getting a scan in Nov and then will decide if i can go off the drug for a few years. Am rather nervous as only taking one a day. Will report on scan results. ( scan scares me) I got afib on ibrut but still get it with acalabrut. But it happens when i stress myself ( like staying up online til 2.30 AM or eating too much salt.) I can control it if vigilant. Hope going off will lessen this symptom. You might be fine with one a day. I wish they made it a 3 capsule dosage.

[Unglorious in reply to onu1tadi2]

Thank you so much for your reply. Hopefully I can reduce the dosage to one pill a day.

Will try and get approval from oncologist after blood test in Nov.

Wishing you continued victories with your battle against CLL.

[onu1tadi2]

thank you. Best wishes to you too.