I know there have been other discussions on being cold and chilled. I find that every once in a while I get so cold and shiver when I first go to bed then in the middle of the night I am so hot. I have a cold right now and last night it happened again. I keep thinking it is my bodies new way of fighting. I mentioned it to the resident on my last hematologists appointment and they chalked it up to premenopause. I am 42 and this started after I started Gleevec a year ago. Has anyone else had this?
Posted 02 February 2011 - 02:05 PM
Yes, after starting Sprycel I was COLD. All the time, and I am usually one who is warm. Then after I go to bed, I start to get very hot, especially my feet. I even have to get up and go and put my feet in cold water to cool them off. I am 47, but have already had a hysterectomy. Now THERE is a fabulous surgery, best thing on the planet!
Posted 02 February 2011 - 02:08 PM
I am one of those who has posted about being cold and chilled a lot. I am also very cold and shivery when I first get into bed at night and have been having night sweats again recently. I was having night sweats prior to diagnosis and my primary doc said it was premenopause. But when I was diagnosed the oncologist told me the night sweats were a symptom of the CML. When I first started the G the nightsweats stopped. But over the last few months I have been having them again. I am so cold and shivery when I get into bed I actually have an extra comforter on my side of the bed so I don't know if I am sweating through the night because I am over bundled or what.
Dx 3/10 G 400mg/day since
Posted 02 February 2011 - 09:38 PM
My body temperature has dropped from 98.6 to around 97.7.
One other thing you should be aware of is that our TKIs can affect our thyroid function which can also make us cold all the time. My doctor keeps on eye on my TSH levels, he was burned once in the past and didn't catch it - he won't let that happen again.
I suggest the next time you have a CBC that they also do a thyroid function test to be on the safe side.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 03 February 2011 - 02:44 AM
I've also noticed that my body temperature drops on occasion.
it's not a good feeling, and when I do feel that way, I climb in bed and cover up.
It doesn't last very long, and by the time I wake up, I'm back to normal.
I just attributed it to one of the many side-effects of Gleeveec
and since it doesn't happen frequently, I'm not concerned with it.
On Gleevec since 02-02-10
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Posted 03 February 2011 - 07:17 AM
I am always cold, no matter what time of year it is. I rarely wear short sleeves any more, even in the summer. I layer my clothes but most of the time I still need to grab something else to wrap around my shoulders. The only time I warm up is when I go to bed and get under my cozy comforter. And I do have occasional night sweats too.
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