23 replies to this topic

[LivingWellWithCML]

Hi everyone,

I've seen some mention of this in old threads, but wanted to resurface it again to see if this is unique to me, or if others are dealing with this.  I'm approaching my 9-month FISH/PCR on Gleevec 400mg (was FISH negative @ 6 months) and generally feel quite good.  Limited side effects, big appetite, fitness level is at an all-time high, and my attitude/outlook is definitely on the uptick.  I did end up catching an infamous 48-hour stomach flu that went around our family about 2 weeks ago -- resulted in a full night of vomiting and sharts, followed by a day of flu-like symptoms, but I recovered from that in the same time that the rest of my family members did ... a sign that the WBCs are continuing to do their job.

Around the time that I caught the stomach bug, though, I had a regular occurrence of mild night sweats for a few days during/after the bug ... then the sweats went away, but do seem to come back every few days for no good reason.  Last night, for example, I woke up in the middle of the night and my clothes and sheets/pillow were damp ... not drenching, but definitely damp enough for me to want to change clothes.  Meanwhile, I'm not sick at all during the day and feel just fine ... high energy, no fatigue, etc.

Anyone else dealing with this?  TKI side effect maybe?  Any real cause for concern at this stage?  Ok to just wait for my 9-month checkup at the end of January, or should I rush to the oncologist?  Hate to burn a co-pay at the end of the year and over-react.  I sooooo want to go the full 3 months without seeing a doctor, but I don't want to ignore something that's terribly unusual or an obvious indicator of a big problem.

Thoughts?

[CallMeLucky]

Unless the sweats are in the presence of a fever, I wouldn't see it as something to go to the doctor about.  It is probably a side effect, possibly something else working its way through your system.  I find that when I get sick now, even after I feel better, some weird things linger.  If it really bothers you or seems really excessive then you should go in, but from what you are describing, it would seem that its not anything to worry about.

[GerryL]

Hi Dan,

Night sweats appear to be a side effect for some on TKIs, could be when your system is a bit run down some side effects try to make an appearance. I had this happen with the Gleevec rash - hadn't had it for a year, but caught a virus and it tried to make an appearance again.

[LivingWellWithCML]

Ah, interesting.  Admittedly, I have been traveling a tremendous amount for client work over the past few weeks ... lots of flights and hotels, and short on sleep.  That must be it.  I'll keep the co-pay and buy my wife another Christmas present with the money.

Maybe I can get caught up with some rest over the holiday ......... uh, yeah ..........

Thanks guys - I feel better already! :-)

[Pin]

I used to get night sweats from another medication. They would come and go, sometimes I'd get none, and then I'd go for a few days of having them so it might just be a side effect?

The other thing to consider is stress, I know you said no good reason though - but it's something to consider. The night after I was diagnosed I woke up feeling like I'd been in a rainstorm and I don't think it was the leukaemia because I wasn't having them regularly (night sweats I mean)...

[CallMeLucky]

I never had a leukemia symptom until I was told I had leukemia 

[Pin]

I know!

The weird part is that when I was diagnosed I realised it was actually the cause of all the little symptoms that I had been attributed to other things (like stress!)...

[WoofWoof]

I get night sweats almost every night. Best thing I've found is to wear Under Armor brand for Pj's. Helps to wick away the moisture.

[LivingWellWithCML]

So, I am not the only one - that really helps to hear.  And I now think that stress could definitely be a factor.  Guess it's time to ask Santa for some Under Armour PJs - LOL

Thanks everyone!

[Vandyfan]

I have night sweats regularly with Gleevec.   Keeping a change of clothes near the bed helps.  Stress can come in lots of forms, but I can get night sweats after a very relaxing day (to the extent we can ever have a "relaxing" day with CML!)

[pamsouth]

I will be 64 years old this New Year.  When I was 53 in 2001, I went thru menopause with hot flashes.  Took some harmonies pills for a couple months, but there was so much on the news about these med's causing breast cancer, that I quite taking them.  After a year maybe two years, can't remember, the hot flashes went away but the night sweats have always stayed.  I was diagnosed in 2005 with CML PH+ so I don't associated the night sweats with Gleevec.  However MdAnderson Houston Tx, said I had  CML for several years before diagnosed in 2005.  I found that interesting, because my primary doctor, who had me go to the cancer center and do another lab, because I had high platelets,  white cells only 15 thousand, any how she along with some other doctors here in the Indianapolis In. area said i probably only had CML a short time, before diagnosed.  Yep primary doctor kept saying found it earlier.  That was far from the truth, I think she was trying to convince herself or me because she should have something wrong on my CBC in 2002.   I would guess they probably were covering for my primary doctor because 3 years earlier ( after being dx in 2005, I asked primary doctor for my cbc which were 3 years before diagnoses)  2002 Platelets were about 75 thousand higher then the normal and granullytes were off slightly, but then again my granulytes were have never been off by much, so I suppose that is why my primary doctor didn't question it, not off enough, still there were several things that looked odd, not just one thing.  Even though I went for an annual check up, the doctor didn't order another CBC for 3 years, maybe that was standard protocol for my insurance.  Just the same the counts that were off did kick out she surely couldn't have missed it, I think CBC was off enough that she should have at least brought it to my attention.  That is why I always ask for a copy of labs, I am not sure doctors have time anymore to look at them closely. Anyhow sorry got off the subject.  Regarding the night sweats, I do not believe my night sweats ever had anything to do with Gleevec but I do believe it had/has something to do with CML. When I first got to bed I warm my PJ up in the dryer as we don't turn the thermostat up high in the winter months.  A few hours after I go to bed I wake up and am pretty sweaty, I have quite a few light weight night shirts, actually I like my cold pillow and cold sheets.  One benefit have night sweats we keep the thermostat down and save on the electric bill.

PamSouth

[Stevea]

I get night sweats almost nightly for the last 10 years, some nights are worse then others and by the time I wake up sometimes it's all dry.

I was just at my doctors for my 6th month check up and I told them again about the night sweats and they don't seem to care, I brought it up when I first got there and never talked about it again.  I wasn't sick (fever), like someone else said, so it was fine.

[PhilB]

Been there.  Done that.  Wrung out the tee shirt.

[pamsouth]

I had night sweats long before Gleevec.  I think it is the CML.  The doctors oh I quit complaining a long time ago.   I don't think they know all the answers, that is probably why they ignore us or just blew it off. 

I don't think the onc realize we have pretty smart cookies on this discussion board. Hum we probably more then some of these ONc.

PamSouth

[LivingWellWithCML]

I actually haven't had sweats in several nights now.  Guess it's something that will come and go ............

Merry Christmas everyone!

[donkatking]

I had night sweats really bad and up to about this time last year I didn't know why.  I was diagnosed with CML in February 2011.  Well I started taking Tasigna almost right away.  I still have periods of night sweats and hot flashes during the day.  I get to sweating so bad at work sometimes and feel so cold.  Just kinda been getting used to it.  Guess it is something I'll have to just deal with.  Besides the night sweats I just at time feel really cold.  Never used to have that issue so I just wear a light sweater indoors at sometimes at work.  I also had a bad bout with a stomach virus last week and for a day or so couldn't even take the Tasigna.  Finally getting over that issue.  Took me away from work for 3 days this past week.  It seems as though with having CML and taking Tasigna those kind of issues can be alittle bit harder to deal with. just seems to last longer.    I now see the Cancer center here in Indianapolis once every other month and they just do bloodwork.  I've had one bone marrow aspiration about 4 months ago now. I'm for the most part feelin pretty good.  Aside from a few side effect issues with the Tasigna I guess I'll be OK.  Able to work about 20 hours overtime almost every payperiod but feel I get tired alot easier.  Doctor said no used to take a multi-vitiman as it is the Tasigna most likely causing me to feel this way. One thing I found is that Tasigna by itself does is cause you not to be able to sleep.  I take 1mg of Lorazapam a few hors before bed at night and get to sleep.  Without it I just stay awake.   Overall I feel lucky that they caught this early and I'm still here.     

[LivingWellWithCML]

Hey Don,

Weird - I get the cold feeling as well.  It comes and goes, almost like my internal thermostat is out of whack.  This is something that I didn't have until after starting treatment ... Not really scary though.  But it is annoying!  Perhaps another interesting side effect from treatment...

[pamsouth]

DonKatKing.

Regarding your post >Cancer center here in Indianapolis <<.

I went for a second opinion at the IU Simon Cancer Center in October.  I will be continuing to see the doctor and doing Lab at IU starting In January.

Is that where you go the IU Simon Cancer Center?  If so, are you satisfied with their quality of care and communication with the staff?

PamSouth

[pammartin]

What a great reply Lucky!  I told the oncologist (he was not nearly as amused as I was) at last visit I wasn't ever sure if I experienced something that needed to be brought to someone's attention, or in fact, whatever it was may not be that important.  If memory serves, my exact words were (this after he gave me royal hell for not contacting him sooner about bruising when I knew platelets were low and it is a common side effect) "It is damned hard to discern what is a regular fart and what is a leukemia fart, I am not sure anyone could tell the difference."  "A leukemia fart is serious, a regular fart is just that, ......gas."  " I have a difficult time figuring out which is which."  The nurse had to leave the room, she was unsuccessfully trying to hold back laughter.  The best thing about my entire comment, uncouthness put aside, I was as serious as I could be!

Pam

[AliceJane]

Thank you! Your post made me laugh out loud, for real. Perfect start to the day!

Now, on to night Sweats.

My experience;

my night sweats were more like bone freeze while skin sweating like a pig. 

I would wake up sweating and throw off covers and then notice I was freezing cold from inside. Covers back on, more sweating.  It was as if my bones had frozen solid and could not get warm inside while the outside, my skin was stuck in a sauna. Crazy!

before Dx, these sweats were one of my symptoms and were getting more frequent

on Gleevec, they got worse, lots more frequent

on Sprycel, began to ease up, happened once or twice a month

on Tasigna, Relief! almost never happens.