Sweats

[BohemianFreddie]

I am 77 and was diagnosed in 2015. I am currently I'm remission, as far as I know however I have been having severe sweating again and not just at night but also daytime. I have never been one to sweat so I suspect CLL acting up again. I have insomnia so my "nightsweats" occur during the day also. The sweating has become a real issue. I was originally treated with Rituxin and never again will I do it. It has caused breathing issues. Right now my plan is to see PC and have bloodwork done. I have also been dealing with Anemia and had 2 iron infusions so keeping an eye on everything. So I believe the sweats are not just for at night. As I said, I am not one to sweat but boy, the past month has been a doozie.

[NMgal]

Hi, I too have had years of the type of sweats you describe. Have you had your TSH levels tested? Hormones, even though my levels are normal I still sweat like crazy. Some CLL information says the body has a hard time regulating body temperature. I still have no answers, I have been in remission for 3 and a half years, yay! Best of luck

[craterlake in reply to NMgal]

hi NMgal ,, that is encouraging news ,,,,,what treatment did you have to get into remission ??

[NMgal in reply to craterlake]

Hi, one year on Ibrutinib, then Obintuzamab and Venetoclax. 2 years on those meds. I still do blood every 3 months.

[craterlake in reply to NMgal]

thanks , I am on O&V now but not doing as well as I was ... still praying for the best outcome ...🙂

[NMgal in reply to craterlake]

Yes! Keep the faith. We're all so different. I've read others going through treatment and they would keep working. Fantastic. But it can be a bit more complicated for some of us.🙏

[BohemianFreddie in reply to craterlake]

Rituxin infusions. But, created COPD due to severe congestion. All nurses said was "take Mucinex"!!!!! The congestion was so bad my PC put me on 20mg Lasix, which helped. After having had infusions and what that med did, I will no longer do any treatments. CLL was found early and I think that with infusions helped remission but I paid a price. I am not comfortable trusting anyone. My congestion was severe and no-one dealt with it. So, if the CLL goes rogue, so be it. I do hope things work out for you. I think I was just lucky.

[LeoPa]

Sounds like you need a thorough checkup. Did they tell you why you are iron deficient?

[JustAGuy]

Hi and welcome to the international group. My question for you is are you under the care of a hematologist? Your question would be a good to put to him (or her as the case may be).

[Big_Dee]

Hello BohemianFreddie

I have been through two types of CLL treatment and sweats came back each time I relapsed. Good thing is they leave within one month after starting treatment. Blessings.

[pkpayne]

You sound familiar to me. I'm 76. I was dx in 2016, went into a trial and went to umrd but started to sweat (and I've never been one to sweat either) but would wake up at night with my hair wet. And I have trouble sleeping. I'm back in treatment now with Zanubrutinib and the sweats have subsides a little but not totally. But I just started in treatment about a month ago so maybe it will go away. Sounds like we are on the same path.