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Hello all,

I was diagnosed one year ago, woth 65k wbc and 27% bcr-abl, 100% philadelphia with 3 cromosome translocated (3, 9, 22). At the time of diagnostication, the only symptom I had were night sweats: I was changing even 3 soaking wet tshirts on ome night. I was put on Sprycel wich brought my into hematological remision (6k wbc) in 2 weeks. Also, the night sweats stopped. Bcr-abl droped down quite nicely: 0,32% after 3 months, 0,074% adter 6 months and 0,06% after 9 months. Since starting treatment, i also had some random nights with small night chills (one tshirt a little wet, without having to change it) but for a week now I start to have more. I wake up at 3-4h almost every night with my head and forehead wet and in the shoulder and chest area. Seems this simptom is coming again and I m afraid not to indicate that the remision is not going away. Sprycel was good with me, with only some fatigue and some manageable bone pain every now abd then. Can you please tell me if you had experienced something like this? Could it indicate that the desease is coming back? 

Hello.

Well, first of all I'd suggest you talk to your doctor about this; he'll be the one to dispel any unwarranted fear, or to suggest remedies if needed.

Having said that...

Night sweats were also one of my symptoms, a huge one, but I completely failed to see them as a symptom, the fool of me :)
I used to wake up completely soaked, had to change my pijama and t-shirt once every night, but I thought "well, isn't this blanket warm?". 

MY WBC was 50K, so very similar to yours; also my PCR progression was similar to yours.

Night sweats disappeared straightaway, right after a few days of 140mg Sprycel; can't remember exactly, but I'd say right after 4 or 5 days.

Some months after starting therapy I had some new night sweats episodes, together with a minor weight loss, and that really got me worried; I was sure that CML was back in control.
Luckily it turned out to be nothing, weight loss was due to some minor digestion problem, and just temporarily. Night sweats were due to, well, a number of factors: an over-warm blanket for a start.
Also, despite my perception, I must admit they were really minor sweats: just some little sweat on my legs, which tend to be warmer than the rest of my body.

What dispelled any doubt was my periodic blood test; I was having them once a week at the time.
If your blood levels are all right, it is very very unlikely that CML is back. Hematological response is the first to appear, and the last to go if a TKI stops working. 
At 9 months you were also in a quite safe area as fare as the PCR value is concerned, well below MMR.

So I would suggest you talk to your oncologist or hematologist, and have your periodic blood test to get rid of any doubt.

In the meantime I would not worry too much; if you're like me anxiety might add up,and then you'll see starting symptoms everywhere.

Nothing like a good old blood test to wash worries away :)

Let us know how it goes!

Thank you for the fast response. I discussed with my hematologist today, she said that, given to my most recent PCR I am on the safe side, we will repeat it in December. I will see in my hematologic tests if there were any changes, I will repeat it in 10 days. So, hopefully it will be a minor side effect :) I will follow-up here as well

It was last year December 2017 when I was diagnosed with CML with quite similar symptoms as Ciprians. Along with 2 months of history of night sweat which gradually increased, I went for a blood test which showed 42k WBC and 27% bcr-abl, 100% Philadelphia with 2 chromosomes translocated (9, 22). I was quite traumatic to hear that and was put on Dasatinib 140mg OD. which worked for me and all night sweats were vanished in about a month completely. However, my body faced a challenge accommodating the highest dose of dasatinib and started developing intolerance to the medicine. WBC dropped to 1000 and more specifically neutrophils dropped to 500 and so 3 times during the next 8 months of a journey with dasatinib. As a repercussion, my BCR-ABL did not fall to good zero but was around 6.345% which is not a good sign. My Onco reduced the potency of dasatinib to 100 mg which I am taking from mid of September 2018 till date (non-stop). Now, last couple of days, I am feeling the night sweats around my neck and back of head area (The same symptom which occurred during the beginning of disease). Though, the feeling is not as strong but it scares me to assume that disease is around the corner again. 

Did anyone had similar night sweat while on any TKIs like dasatinib? What these symptoms could mean? I have my appointment with Onco for next week and at the moment I am travelling. Any clue about what it is shall be really relieving till I get my test done to confirm!

    

Hello SorubhMaggo, 

 

How did the sweats come up? Is everything all right with you now? Since the previous post, I've experienced sweats like this but always they went away. I am in major remision now (0.009%bcr abl). I think my sweats were also stress related. 

Good luck!

I was diagnosed with CML May 2018, the night sweats and some other symptoms returned 5 weeks ago i've been in touch with my GP and the haematology department, the latter told me to see my GP my GP is as much use as tits on a bull. I have to wait until my appointment at haematology next month to see if it is CML related.

I feel you. I have night sweats all the time from Sprycel its a side effect. I wear tshirts to bed and a towel on my pillow. My hematologist at Karmanos is a joke. I told him of all the pain I was having and he said it's not Sprycel it has to be the Percocet I was taking. So now I have been off opiods for 7 months and I still have all the same pain and night sweats and my back and muscles hurt all the time and all my joints hurt all the time. All I take is one Aleve 3x a day for the swelling and it works a little but my joints feel like I'm rubbing bone on bone and my Hematologist sent me to my Primary care Doc and he ran tons of tests MRI , EMG , xrays, blood tests and everything he could. I go see my Primary Doc after all the tests and he could not find anything wrong with me other than CML so he said it must be the Sprycel . Doctor's where I live are a joke so I just deal with the pain by using CBD cream at night so I can sleep because it puts me to sleep otherwise I'd use CBD cream all day because it helps me alot. I sleep very well at night. Befroe the CBD cream I didnt sleep well .