Restarting Calquence: I had to get off Calquence... - CLL Support

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Restarting Calquence

schmooth97 profile image
5 Replies

I had to get off Calquence for a procedure for 12 days. I restarted this past Wednesday night. I was down to 1 pill a day and doing well. I got blood work at Urgent Care due to being tired off and on throughout the day which didn’t happen before. I was on Prednisone for 6 days before the procedure to control the lymphadenopathy as it got painful in my armpits and groin to the point I didn’t feel like myself as they swelled back fast after the 4th day off. The bloodwork showed ALC of 8.1 and WBC of 15, the highest I’ve ever had. I’ve had 5.4 ALC before and almost 15 WBC. My hemoglobin is .7 above the minimum.

Has anyone had to get off a BTK inhibitor/Calquence and did you restart with some side effects or is this just me?

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schmooth97
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AussieNeil profile image
AussieNeilPartnerAdministrator

Hi schmooth97,The rapid development of lymphedenopathy that you've described, is a well known property of BTKi drugs, known as tumour flare. It usually doesn't happen so quickly after stopping, but should resolve fairly soon after you restart Calquence.

Neil

schmooth97 profile image
schmooth97 in reply toAussieNeil

so my numbers should plateau in a few days?

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toschmooth97

Your lymphadenopathy should resolve, which is the important symptom. Don't worry about your lymphocyte count. Those lymphocyte count changes are negligible in the overall scheme of things. What's important are changes in your neutrophil and haemoglobin counts. Don't be surprised if your lymphocyte count jumps up much higher, as the CLL moves back out of your nodes into your blood. That could take a few weeks or more to return to your previous low counts.

Neil

Eucalyptus22 profile image
Eucalyptus22

I came off for 3 weeks for the IMPROVE trial to see if I could produce antibodies for covid and flu.I noticed a couple of hot flushes during the night for about 4 days after restarting. Think my body was complaining a bit.

Other than that, no changes to bloodworm or other side effects.

tom3659 profile image
tom3659

I'm been off it 28 days as of Tuesday for a surgery but going back on..I hope no problem s......

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