Constant feeling of being chilled

[Agatesup]

I have been on Imbruvica for 21 months. About three months ago, I have a chilled feeling - from my belt level to my scalp. I am wearing sweaters in June. Has anyone else experienced the chills? This my first post.

[Newdawn Administrator]

A warm welcome Agatesup and glad you’ve come out of the cold to make your first post! 😊

I think there’s something in this because prior to starting Ibrutinib I was boiling hot all the time and very uncomfortable even in the winter. I’m delighted to say I now enjoy feeling cold and whilst it doesn’t help you, I tend to think if it’s managed to drop my internal thermometer, there must be something about this drug that does that.

Mention it to your doctor and sorry I don’t have any answers but I can well believe it’s had this effect.

Importantly, is it working for you?

Newdawn

[Mcpill]

I was cold the entire time I was on Imbruvica. Very Cold! I did not start to feel “normal”. Temperature wise until I had been on Venclexta for almost 9 months. I used to mind the heat terribly, but I still rarely feel hot. Still, a wonderful drug. Happy to be on Venclexta now and hope It works a very long time. Wish you all the best.

Susan

[dmmck]

I was hot constantly before I started treatment. After I started ibrutinib, that all changed and I am cold much of the time. I always carry a sweater with me if I’m not wearing it.

[roszika]

Having only started veneteclax 4 weeks ago besides fatigue my only other side effect is I am feeling the cold more than usual. Sometimes my hands go white and my temperature drops to 35.7 Clecius. I think it is something to do with the drugs changing the blood chemistry

[Panz]

A very big welcome to you....I am so happy you have drawn my attention to this being connected to Imbruvica. I have never dealt with being cold and I have lived in Northern Michigan most of my life but I now find myself wearing long sleeves, jacket, sweatshirt, and sometimes I feel I could use a parka to shop groceries!! I just never made that connection. This is a great community and we certainly learn from each other!!!

Please continue to join us and you keep sharing your thoughts! Do you have any insight into the traveling joint issue?

😍🙏☘️💕

[BeckyLUSA]

Welcome Agatesup. You will find a multitude of knowledge and support from this group.

Chills have been my constant companion since CLL came into my life. Sometimes worse than others. Have not noticed a difference since starting treatment with Ibrutinib and Venetoclax. They are still there. Keep a blanket in the den for when my husband gets hot and turns on the ceiling fan. Sometimes two blankets if it is winter time.

Best of luck to you in the shared journey!

BeckyL USA

[Smakwater]

Agatesup,

Have you observed your temperature using a thermometer?

I was feeling hot, and actually read 94.5 F consistently, which is borderline hypothermic. Thyroid stimulating hormone tests showed low levels "hypothyroid".

Research shows that both hypothyroid and hyperthyroid conditions can be influenced by cancer drugs.

In addition, the sensation of being hot or cold can be misinterpreted by the body, e.g. chills when feverish or taking cloths off when hypothermic.

The thermometer is a certified CLL union member tool.

JM