On calaquence and cold all the time

[gymbunny1]

Has anyone experienced being extremely cold when taking calequence. I usually run hot,so this is not normal for me.Have been on the drug for about 90 days now

[country76]

Yes, I have experienced being cold taking Calaquence. Not all the time, however, I get a chill up my back. I wear a coat or sweater in the house frequently. Almost daily wear a camisole under my tops. Occasionally I wear a fleece jacket and socks to bed. lol 🤣

[Walkingtall62 in reply to country76]

oh my, timely posting. Last year doctors decided to reduce my thyroxine and it has taken almost two months of gently asking and then constant nagging to get the dose increased. Why they don’t understand the thyroid I don’t know. Anyway very recently seems I have no control over my body temperature. It’s like an internal coldness. Can wear up to four sweaters and then eventually I am boiling hot, but can’t always find the optimum. Been on Acalabrutinib for two years so didn’t think it was this drug, but have been much less active due to thyroid meds recently. We soldier on!!!

[gymbunny1 in reply to Walkingtall62]

Thanks for the reply

[country76 in reply to gymbunny1]

I am also taking thyroid meds. My levels are checked every 3 months. They did lower from 175mg to 100mg, My palpitations disappeared however the coldness remains. It is basically during the colder winter months. I find exercise helps to up my metabolism. This has been since treatment. The year taking Ibrutinib my thyroid was affected and I became hypothyroid. that was the year they reduced my thyroid labs saying due to the fact I was considered cured of thyroid cancer. My thyroid was removed in 2006 and I took the radioactive tablet.

[gymbunny1 in reply to country76]

Thank you

[Pageboy]

I’m always cold! Never linked it to Calquence however, more turning the heating down and just being a generally cold person. I wonder if there is something in it though? Hmmmm.

[Toast-up]

I developed chills and shivering while being on Calquence (acalabrutinib). I too run very hot usually. Stopped the drug (it was causing cognitive(?) problems) for a few weeks and they went away. Restarted and they came back after a couple of months. Now on half dose and the chills have gone for the moment.

My temperature with the chills was often around 35 degrees (95F).

[gymbunny1 in reply to Toast-up]

So good to know. I thought it was the drug but didn't know if I had something else going on

[lankisterguy Volunteer]

Hi gymbunny1,

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Many of us with CLL complain that our personal thermostats are broken

Here is the list of the 13 previous times "thermostat" was mentioned

healthunlocked.com/cllsuppo...

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I usually say that I was an avid snow skier and could ski for 4-8 hours in 15 deg F (-9 deg C) weather without bothering to come indoors. Now I use my heavy ski gear to walk to my car when its below freezing.

Today if my office drops below 74 deg F (23 deg C) I start to shiver and raise the heat stat to 75 / 24, and I clearly recall setting room stats to 67 deg F / 19C during our energy crises.

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Len

[Teemed]

interesting.

I had thyroid cancer, it was removed and I am stable on levothyroxin. My temp was normal.

I started Calquence 7 months ago and now I find myself often cold

[kitchengardener2]

I have been taking Acalabrutinib for nearly two years, I am OK most of the time but have cold periods during the day. Mainly my feet, legs and hands. I wear a vest, tee-shirt with long sleeves and fleece top in the house with thick jogging pants. I find wearing tights under trousers is better than socks and mittens better than gloves. I am better now at night since buying an electric blanket and warming the bed up, also use brushed cotton sheets in winter.

[Sunshine2422]

I only started taking six days ago and I get very very cold and feel a bit off with it , I snuggle up with lots of blankets and hot water bottle. Was not sure at first if it was one of the other meds I am taking along with it but think it is this one 🤗

[gymbunny1]

Thank everyone for your replies