First time post, this website looks helpful?!... so giving it a try to read (n post!) fellow CLLers thoughts and questions and especially the replies to learn more about CLL from those that have it,!unfortunately.
So my brief is... Diagnosed Aug 2020 with CLL (after a couple years worth of prior high WBC per annual physicals (general doc thought I was fighting a virus) ... finally my general doc said see an oncologist, found a good one. I was pretty bold my first visit to pop the question how long will I live with CLL? He said probably normal life expectancy in my case (83) so maybe 20 more years?! I’m in the watch n wait stage. Have 13q deletion which oncologist said was a good thing.
Pretty great health otherwise, but at 63 hey stuff happens like having CLL out if no where?!
My question is having mild on off really low grade fever (not the night drench sweats fever) but having this on n off at night n in some mornings. It’s been going on for 5 months now. Not a big deal but just wondering. Question is...
Is that a common thing with CLL?
Couldn’t find much on it Googling it. Most hits are for the dreaded night sweats. Just wondering if it has anything to do with CLL? Otherwise, I’m fine n going about life normal (thankful for that) except for the dreaded covid still going around to avoid. I read 2 small European studies of CLLers hospitalized with covid n the death rate was a whopping 35% for watch n waiters ... holy moley! I digress, different topic. But point is yes been really careful masking up and all plus got the vaccine. Covid scares the crap out of me since CLLers have a compromised immune system as-is so avoiding getting covid is a big goal.
Anyways back to the question ... any thoughts?
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Pin57
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Many of us report having what we call a "broken thermostat" an inability to tolerate cold or warm weather. So you may be experiencing something like that.
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Pin57, I’m 72, in W&W, have similar fever feeling, too. My GP also thought for 2 years my raised WBC was because of a sinus infection. Then last August suggested an oncologist. I’m sure glad I found this sight. It has the info that matters! Sandra 😊
Sandra - thanks for your reply ... odd that mild fever thing eh? Glad you hooked up with an oncologist n hope alls well. W&W seems just fine but the unknown of the big C rearing it’s head at any time is in back if my mind. I try not to dwell on it and am thankful of the current good days. Glad I found this site! Good way to learn more about CLL what Googling doesn’t tell one.
Stick with us, Pin57, a better, stronger group of people you could ever find dealing with CLL is this forum, it’s administrators and volunteers ready to talk with you daily! ❤️Sandra😊
This is definitely a great CLL Support Group to learn from people who actually have CLL.
You will probably gain more from the group if they learn more about your particular CLL. To do this you should complete information in your profile.
I was diagnosed in 2011 and had mile sweat at times, but the sweating turn into drenching night sweating along with other symptoms when I needed treatment about ten years later.
CLL medications are getting better and more remarkable every year. Ten years ago I had no idea that I would be taking a drug like imbruvica, that’s letting me live a somewhat normal life.
Hopefully by the time you need treatment there might be a cure 🤞🏼
A great group this seems to be already. My first day “on the site”.
I will take your advice n fill out more profile info. Thanks WinJ3 for your feedback and am glad to hear of your good treatment news ... that’s encouraging for a newbie CLLer like me to hear. Fires me up actually! Not gonna be a downer-man Dan.
Hi there! I’m new to this site but not new to CLL. I am 52 but diagnosed back in 2009 (I was told this was an unusually young age to have squired CLL). Thankfully I’m still stage 0 and on a “watch and wait” program, however, always waiting for the other shoe to drop! I do experience frequent night sweats and also now have vitiligo (which no one can confirm as related but I believe it is). Curious if any other people out there with CLL have also experienced this? Otherwise, some mild fatigue from time to time but otherwise super active and healthy woman.
Apparently CLL runs in my family as my mother also has advanced stages. Hers has also progressed to bone cancer and now lung cancer. Thankfully surgeries have been successful in removing the tumors in the bone and lungs but she is now moving to treatment for CLL. I’d also be curious to know if any other CLL folks have had other cancers as a result?
Pin57 wishing you all the best and great to find this site and blog on CLL to collaborate with others and to share experiences!
Make sure your oncologist knows about your night sweats situation. This is one of the questions I am asked at every appointment, and is one of the signals that your CLL could be progressing. Best of luck with everything...
Will keep telling. Mild sweats alone didn’t phase him last appt we chatted about it. My lab numbers are far from red flags at this point, looking real good.
I can absolutely agree about the broken thermostat comment - I am always asked the night sweats question and the answer is “no, but...”.
I am now coming up to 67 and never suffered from hot flushes before. Now I do.
I do not wake up at night because I am too hot, but if I wake up at night I then become too hot 🥵. Which is different. So, I cast off the duvet, go back to sleep and then wake up twenty minutes later because I am too cold 🥶!
It’s there, but in the scheme of things not a major problem.
Best wishes to you and keep as well as you can ( 🥵 🥶).
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