Completed 1 week of calquence for CLL with no ... - CLL Support

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Completed 1 week of calquence for CLL with no side effects. Is it safe to assume I will not get the much dreaded side effects later?

Mackiec1108 profile image
9 Replies

Side effects of calquence

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Mackiec1108
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cajunjeff profile image
cajunjeff

Mackie, I am not sure which side effects of Calquence would be described as dreaded. Btk inhibitors have a rather long list of side effects that can manifest in the first week or over a longer period of time.

It’s natural to worry about potential side effects and I think most everyone on a btk inhibitor will experience some sort of side effects at some point in time. I don’t know there is ever a time we are totally out of the woods for btk side effects.

It is a good sign you have not had problems out of the gate. And I think it’s fair to say that for most people starting out on Calquence, any side effects they get are manageable. And our doctors have a variety of strategies available to deal with side effects.

LizofLondon profile image
LizofLondon in reply to cajunjeff

I’ve been on acalabrutinb (calquence) for 5 cycles and feel increasingly well. Very good luck- I personally count myself hugely fortunate to be on it. Hope this sentiment is encouraging for you

SofiaDeo profile image
SofiaDeo

Well, you obviously aren't reacting immediately to it, a great sign! I reacted to ibrutinib within 48 hours. Hopefully this continues!

I had occasional manageable headaches when I first started, just finishing month 5 and feeling great. Good luck to you👍

SLLJOHN profile image
SLLJOHN

I have just had nearly a week also on Calquence. A couple of minor headaches as they predict. Otherwise I am already losing the heavy limb and tiredness I suffered with Ibrutinib.....remarkable feeling after 3 years. I am definitely a fan already!

Pageboy profile image
Pageboy

I had very manageable, mild headaches after about 3 days and then some bruising after about 2-3 weeks. The biggest side effect for me has been fullness and constipation which in hindsight probably started early. Eight weeks in now and I’m getting a grip on how to deal with that. None of the side effects are ‘dreaded’ so far for me though I have had a pain in my tummy which I have had a scan for and am awaiting the results. Might be connected, might not. Good luck. I’m sure you’ll be fine.

SERVrider profile image
SERVrider

Even though my platelet levels are rising - albeit slowly - the bruising I have is a bit spectacular and I have been on Acalabrutinib for 6 months now. The only other side-effect is minor blood-blisters in the mouth which just come and go again.

Bill1288 profile image
Bill1288

Mackie: I have been on acalabrutinib approximately 21 months now. Had minor headaches in first two weeks, then no more. I have occasional joint and muscle pain . But, I have to say it seems to come when I do not drink enough water for a few days. More coffee than water on those days. I do not know if there is a correlation to my pain and hydration, but I make it a point to drink a lot of water and it seems to help in the joint and muscle pain, (my experience). So my suggestion is to make sure you drink a lot of water daily. Good luck.

Bill

PaulSkinne profile image
PaulSkinne

I've had mild, occasional headaches, and some easy bruising, after 60 days on Calquence. None of these have been severe or debilitating.