20 replies to this topic

[AmyH]

Anyone have any idea why I'm so cold? 

I mean..I do live in Germany..and its pretty cold out right now, but I am like insanely cold.  I can't seem to get warm and no one else around me is cold! 

~Amy

[jrsboo]

Yes, you are cold because you take TKI's to control your leukemia.  *giggle*  I don't know the mechanics of it, but it seems like a lot of use have commented on being cold all the time.  I know I am.  You can usually find me bundled up in fleece all day long, then tons of blankets on the couch where I spend a significant part of the day. 

I have one of those buckwheat filled neck pillows that you can throw in the microwave for a couple of minutes.  That is HEAVEN!  Warms you all up.  Also hot baths. 

Sending warm thoughts,

Caroline

[hannibellemo]

Ditto what Caroline said, Amy, about the cold, especially in the beginning. Not so much now.  My micowaveable neck pillow has lavender in it - heavenly!

Pat

[Billw11403989217]

TKI's can block the action of thyroid medication leading to a lower metabolic rate. Also low hemoglobin induced by the TKI's can make one reach for another blanket

[Pin]

I'm not sure why, but I was especially cold in the beginning - it was also really noticeable because I was so hot with the CML before treatment!

It is better now (7.5 months in), but I'm still usually colder than most people, when it was the opposite before treatment.

[Marnie]

I'm always cold.  Sure glad we have a fireplace that goes on with the flip of a switch.  I have a down-filled jacket on with a down-filled vest over it right now, but the fireplace is sounding mighty fine.  I think I'll head downstairs. . .

[LivingWellWithCML]

Amy,

I've felt exactly the same since starting TKI treatment.  Basically, I'm just a bit colder than everyone else in my family, so I wear an extra layer to compensate.  In the winter, we keep our house at a steady 68 degrees (which is a little chilly as it is), but I need a sweatshirt and a light jacket to be comfortable in the house ... while my kids are wearing short sleeves!  It freaked me out at first, but I've gotten used to it.

Sometimes the "chilly" feeling annoys me, so I will actually get on the ground and do some push-ups to get rid of it.  And it works!  Push-ups, jumping jacks, or something that gets the blood pumping a little harder ... it gets rid of the chilly feeling quickly.  Try it.

My RBC and Hemoglobin levels are still a shade below normal, so it probably has something to do with that.  I also get light night sweats, so I'm going to ask the onc about the thyroid thing at my next appointment just to see if there might be more going on.  Regardless, I feel perfectly healthy and am exercising like a freak, so life is good despite being colder than everyone else.

Stay warm -

Dan

[HeatherZ]

I was always warm before my dx but now I am always cold.  For Christmas my husband bought me an electric blanket with dual controls for our bed.  I "preheat" before I climb in and that really helps with the bedtime chill.  I'm in PA and we have had a fairly mild winter and that has been a good thing.  But when it is cold I am freezing!  Stay Warm

[CallMeLucky]

Heather I do the same thing with the electric blanket, I love it, really helps get the chill out of the core.  I had to laugh when I started using it, my mother who is always nuts about stuff like this said "I don't know if using an electric blanket is a good idea, don't they cause cancer?"  I just busted out laughing and said "I never used one before and that didn't do much to prevent it, the way I see it that ship has already sailed, I might as well be comfortable.

As for cold in general, I am on the lighter side and I was always cold.  There were a few years where I had put on some weight and it was not as bad, now that I am thinner again, it is really bad.  I figure part of it has to do with the TKI, it certainly seems worse, but maybe getting older doesn't help either.  My father was the same way, he moved to Florida, which was smart, someday I'll get to a warm climate.

I've found that when I am really cold if I eat something it can warm me up.  Seems to get the metabolism moving.

[jrsboo]

Ah to be on the lighter side.................I can attest to the fact that weight doesn't matter, sadly.  I am NOT on the lighter side by a long shot, and am always cold.

Sigh.

Caroline

[jrsboo]

Ah to be on the lighter side.................I can attest to the fact that weight doesn't matter, sadly.  I am NOT on the lighter side by a long shot, and am always cold.

Sigh.

Caroline

[Happycat]

Amy,

Well, by now you've figured out this happens to a lot of us. I'm actually getting my thyroid checked, just in case. My mother became hypothyroid around my age, and between the weight gain, the cold, etc., I figure it's prudent to get it checked out. Gleevec increases T4 clearance, so I figure if my thyroid is already struggling to pump out the hormones, gleevec might be exacerbating it by forcing it to pump out even more.

I find my feet often get uncomfortably cold. At work, I have a space heater blasting on my legs all the time, even in summer. (been like this a few yrs now, yet another reason to check my thyroid.). My hands get cold, but not as bad.

At home, I go to bed with a heating pad wrapped around my feet.  It's tne only way I can get them warm enough so I can go to sleep. Otherwise, I lay awake thinking about how cold I am. I wear a sweater and light jacket around the house, fluffy slippers, curl up with a fluffy blanket when I can stop moving and sit down, which means not until evening.

I tried microwave heating pad, then put that around my feet. But when I got up, the moist heat from the heating pad left my slippers damp, which just made me colder. So go for a dry heat if possible.

Traci

[Susan61]

Hi Pat:  That neck pillow with Lavender sounds great.  I am sitting right near my little space heater right now, and the regular heat is running.  I am so ice cold, even to type.  I am constantly cold all the time.  Someone else mentioned not being a lightweight, and neither am I.  I keep my heat set at 70 with the space heater going in the living room.  Then in the summer which I always hate.  Never liked hot weather since I was a small child.  I keep the thermostat at a decent level so the air conditioning is not running all the time.  I still sit with a afghan on me well watching TV in the summer.

My numbers are pretty low with the anemia etc.  So anyone who has questions about our TKI causing this cold feeling, as you can see most of us suffer from it, and its very normal.

[Rissa]

I'm cold all the time too.  At home I wear my husband's wool hunting socks, fleece pants, fleece shirt and cover up with a heavy blanket.  At work, I wear my puffy winter jacket. 

Rissa 

[hannibellemo]

Susan,

I've had a nasty intestinal virus for the past 3-4 days. It was so strange because I was beginning to think it was just a new side effect from Sprycel but I've never really had any stomach or intestinal problems with it before. Finally, yesterday at work my lower back started to hurt, by the time I got home from work I was so chilled and I ached so bad I just got into bed with a heating pad. Turned out I had a fever and today I finally feel much better.

My point, and I do have one, is that I forgot all about my wonderful lavender pillow! It would have been so comforting when I was moaning and generally feeling really sorry for myself.

Hope you all avoid the nasty viruses that are out there right now!

Pat

[Lisal]

I am cold all the time as well!  I need to move to a warmer climate!  Maybe this means menopause will be easy.  The hot flashes will be balanced out by the Gleevec chills?? Or is that wishful thinking?  Hmmm..  Are women the only ones who replied to this post?  Is it just the wormen who are cold?

[CallMeLucky]

"Are women the only ones who replied to this post?  Is it just the women who are cold?"

No.  But now I am feeling a bit less masculine

[Marnie]

Lucky. . .you lost any hope of being considered masculine when someone posted that video of you in the blue spangly tights and heels.

I don't remember the thread or who might have been so insensitive to have posted it, but it was a very telling video. . .