6 replies to this topic

[sferrazza]

Hello CMLers

Before I was diagnosed I was having horrible night sweats which I found out later was a symptom of CML.  I've been taking Tasigna for about 6 months now with great results, but still have night sweats every now and then.  Does anyone else have this issue, is it normal?  I also don't have an appetite, and have lost some weight.

Thanks for your thoughts.

Susan

[PhilB]

Hi Susan,

I think it's probably safe to say that a defining characteristic of anyone with CML is our moment of panic when we wake up with a night sweat.  It seems to be a side effect of the treatment that just happens to match one of the symptoms of the disease to try and scare us.  Rationalising that at 3 am in a soggy bed remains something of a challenge, however.

I believe Winston Churchill suffered from night sweats and always had a spare bed in the room he could simply change to.  Not sure that would work for me though, as I'd wake up to go to the loo, get lost and walk into a wall (or pee in the wardrobe)

Phil

[WoofWoof]

Hi Susan- Yes some of us do continue to have night sweats. Here's a link to a previous discussion:

http://community.lls...age/95084#95084

Hang in there and cope the best you can, I keep reminding myself that all the side effects are still worth it.

[sdl722]

Susan

I have been on Tasigna for 3 months and I occasionally get night sweats as well.  It is not every night but does seem to come in spurts of several days at a time.  I do think they are not as bad as they where pre-diagnosis.  I've tried not to stress out too much about it since my blood work has been good so far.

I'm similar on the appetite front in that there are days where I want to eat all the time and then other days when I don't feel as hungry and seem to lose some weight.

Stephen

[Trey]

Over the first few months after starting TKI drug therapy most CML symptoms should fade and the TKI side effects will kick in.  The changeover includes a period of time where you have both.  It is possible to continue to have some "CML symptoms" which may remain because of suboptimal blood quality (low counts), which could either be a result of the TKI drugs or fewer blood stem cells (which can take some time to restore the numbers).

Since the blood is a major source of removing heat from the body, if the blood is too "thin" it is not as efficient at heat transfer.

[reedgirl]

Greg has been dealing with night sweats as of late.  He hasn't had them since about a month after diagnosis, but with in the last couple weeks has been getting them again.  I'm hoping its because of the heat, but the air conditioning in the room should help with that.  His blood counts are all in the normal range, so just chalking this up to Sprycel

   Audrey

[sferrazza]

thanks for your responses everyone!  I just wanted to make sure some people are still having the sweats, it's easier to ask other CLMers then to call the Onc.  Phil I like your comment about night trips to the loo!!  I would do the same thing!

Happy day everyone