8 replies to this topic

[cjones212]

I certainly don't want to seem like I am complaining, but I have a question that nags at me about continued symptoms.

Diagnosed November 2010. Immediately went on Gleevec (400mg) and that evened things out.  After a year, my bone marrow biopsy showed no sign of the chromosone, so basically everything is fine.

So just a small complaint/question for the gang...

I am still experiencing night sweats.  Never had them before diagnosis, but now very frequently.  Doc says not to worry, unless there are other symptoms.  Is anyone experiencing something like this?  I would have assumed that once my blood counts went back to normal I would not have this problem.

Also, on a related topic...

Now that I have evened out, it just nags me that I have to take this pill everyday.  I am 40 years old and the Gleevec makes me nauseated for about 30-45 minutes daily when I take it.  I try with food and without... It's not debilitating, but just tough looking forward to the next half of my life with this hanging over my head.

Believe me, I am thankful that these small issues are all I am dealing with, but just thought this crowd would understand better than family/friends.

Xtopher

[CallMeLucky]

I completely understand.  I take my pill before bed to sleep through the nausea.  Some times I wake up around 2AM and I feel nauseous and have trouble falling back to sleep, most nights however I sleep through the nausea without feeling it at all.

Night sweats can be a "common" side effect of Gleevec, I'm sorry but I don't have any suggestions for that, you should discuss with your doctor, but I don't think it is anything to be concerned about, just something annoying to deal with.

[Sneezy12]

What was your last bcr/abl result? Frank

[Susan61]

HI:  Unfortunately we need to stay on our TKI's. We get a good response with a Complete Cytogenetic Response,or some of us get to PCRU.  I still deal with nausea after 11 years of taking Gleevec.  If I eat a good breakfast, and then take my pill I am fine.  Others take it with dinner due to it being a bigger meal to help absorb the pill.  The breakthroughs of nausea can happen at anytime, no matter how long or what dose you take.  Its something I have learned to live with.

     Yes, we all understand better than our family and friends  They can be sympathetic to how we feel on certain days, but they do not truly know what its like

    I never had the night sweats.  I am usually very cold all the time, due to my anemia.  I have to say that this hot weather we got this weekend has made me sweat during the night, and had to go turn the thermostat down to get more A/C going. Then I was fine.

   Hope your doing better, and some of the advice you got has helped.

[mariebow]

dx jan of this year and taking Tasigna, my high wbc now back in normal range, I still have some night sweats, and I wonder the same thing, why do I still have night sweats and I am not well learned yet on this topic, it may be for me that I have not reached where I should be with my leukemia.

[momruns]

Greetings,

As for the night sweats, they began right before diagnosis so I was surprised when the doctor asked if I had any.  But,  I am 53 so is it menopause related????? I had a hysterectomy when I was 40 so I am not sure when I started menopause, just another twist. 

I agree with Susan, I am colder now than ever except for the occassional night sweat which last about 1-2 minutes.  I am an RNFA in the operating room and since diagnosis I usually wear 2 gowns and sometimes the staff will ask if it is a 3 gown day.  I am chronically anemic and still work 10 hour shifts so I try to rest on days off. 

Loreta

[Pin]

Hi there Xtopher, I actually get my "sweats" during the day time and have been taking mine with breakfast. I'm usually cold all the time, but then suddenly I'll get hot, sweat, and then get cold again - almost like a cold sweat. It's not pleasant. I am trying to think of ways to deal with it. Today I brought an extra shirt with me - maybe I should try under arm absorbent pads?...Out of curiosity, what time of day do you take your dose?

I would make sure that you eat a decent meal with your Gleevec though - I get nausea on and off (usually with 4-ish doses per week, worse if I don't eat properly), but things that help to make me less nauseous are 1) eating a decent amount that includes carbohydrates, 2) not lying down for at least an hour or so after taking it, 3) not drinking too much water with it (just enough to get it down). Not sure if you have tried all those things already though...

[Happycat]

This is an interesting discussion, since I'm seeing a pattern. Is it fair to say those who have night sweats tend to have nausea, too?  That's what I see here. 

This intrigues me because my dd has migraines, and also suffers from motion sickness. Her neurologist tells me there is a strong correlation between the two.

So now I'm wondering if a pattern of night sweats and nausea is indicative of action at certain receptors. And are these receptors in the brain or somewhere else?

Please excuse my musings. I find it fascinating how we all have different side effects, yet there does appear to be certain side effects that cluster together. There must be a reason for this, it can't all be random. Wouldn't it be nice to know why or how it occurs, then be able to "throw a switch" to turn it off?  In the dawning age of personalized medicine, it would be great if you could predict your response and side effects based on a quick bio marker test. I can but dream. Actually, I dream of a way to stop the darn muscle spasms, but you get the idea.

Traci

[Aussiegirl]

Has anyone tried Zofran for the nausea it comes in generatic form now and is afforable. I find it helps a lot. I also learned though trial and error over the last 2 years that what you eat when taking it makes a difference as well. the fatter the foods the worse the nausea. Try taking it with a bowl of oatmeal I found that that to be very helpful. As for as the night sweats well I get them all day and all night lol and no its not private summers long past that era. I can only wear 100% cotton now. I keep  a fan on me constantly and many pillows to swap when they load up on sweat. also the polyester pillows make it worse. try  down pillows and cotton sheets. the foam pillows make it worse in my opinion. the key is to manage the side effects as I don't think they will ever subside.