7 replies to this topic

[JoshLee]

Hi Everyone,

      I am just writing to ask if any of you still get night sweats? I remember before I was diagnosed I would be in bed and get SO HOT even though the A/C in my room was turned way down. So when something like this pops up I get freaked out a little. Over the past few weeks I have woken up 3 times either being extremely hot and last night actually damp. I took my temperature immediately when I woke and it was 97.7, which is a normal sleeping temperature for me. So no fever. I kinda gave in and went to the ER and they did a CBC and it everything was completely normal. WBC 4.5 HGB 14.9 PLT 160. I have also been so tired lately despite getting plenty of rest and with a HGB of 14.9 it leaves me feeling a little confused. Less than a month ago I had a great PCR test so I am a little off put by my unconfident ways concerning my health, but when something like this pops up it freaks me out! Anybody else develop night sweats? Should I be worried? Thanks, Josh p.s. I take 100mg sprycel.

[August1]

Hi Josh,

I get this kind of thing every now and then with Sprycel. It comes and goes. Also get the feeling that I have a sunburn on my face even though I don't. As long as blood work and PCR look good by oncologists do not seem concerned at all. I try to tell myself the same thing.

Unrelated to CML would be making sure that you're getting good quality sleep at night. There are sleep studies which can take a look at that to be sure everything's good. But again, this wouldn't be caused by the CML.

Take care,

Bill

[Marnie]

Hi, Josh. . .I'm on Sprycel, and I find myself sometimes at night throwing the covers off, because I suddenly get HOT.  I have not, however, had night sweats where I soaked the sheets, since before diagnosis.

I also get a very red face at times, looks like sunburn, though it doesn't feel like it.

Seems like I've heard quite a few people on Sprycel who have similar things going on.

Marnie

[Taylor]

Yeah, I've had one or two moments of red face that I didn't notice until I looked in the mirror. I may have had a night sweat too, but nothing too major.

[0vercast]

Yeah, same here. I experience hot flashes on my face on a daily basis. They come and go at random.

I also get extremely red in the face sometimes, and it's usually only on the right side. It's also rather spotty and blotchy, and it looks like hives. You should see how red my ear gets when this happens, so red that it's almost more of a purple and it feels like you could fry a steak on it.

It's a little embarrassing, but the Onc says it's a common Sprycel side effect and not to fret about it.

[PhilB]

Having upset someone previously, I will carefully restrain myself from responding to any of these comments about people being hot in bed.

[hannibellemo]

Hi, Josh,

I've been on Sprycel since 10/2009 and I've always had problems with intolerances to temperature. When I first started I was cold all of the time. Then I realized as the weather got warmer that I have a real intolerance to heat. I can become absolutely ill if I'm out in the heat for any length of time. I did not experience this so much with Gleevec, but it is very noticeable with Sprycel, even now that I have been taking a reduced dose (50mg) for nearly 2 years.

This winter was very cold here in the midwest and I generally keep the heat set at 68. I can't lower it because we are using geothermal and it simply doesn't respond like normal heating systems so I keep the registers closed in the bedroom. I use a down comforter that I generally am kicking off midway through the night because I am too warm. 

I'm wondering if this has to do with a malfunctioning thyroid. My TSH has been running an elevated 5.5 - 6.5, but my Mayo onc made a note that he won't put me on medicine unless it reaches 10. I'm going to make a note to check that out at the end of this month with my local onc and see what he says.

Any ideas or opinions on the heat intolerance vs Sprycel and thyroid function anyone? (Except PhilB, not a word from you on the subject -   <just kidding>)

Pat

[PhilB]

Breaking the habit of a lifetime and being serious for a moment, after 5 years on Glivec I still get serious night sweats probably once or twice a month.  Frightened me at first, as I had never had them before the onset of the CML and so I associated them with the disease, but they are just one of those weird things that are both a sympton of the disease and a side effect of the treatment.  'Go figure' as I believe you say on that side of the pond.