When I posted a few days ago, I mentioned that my haematologist thought I may be nearing treatment. Just received a copy of her letter to my GP which feels less 'urgent'. She says that my lymphocyte count is rising, albeit slowly and the doubling time is approximately 8 months. Hb 114g/L, lymphoctyes 84 x 109L, neutrophils 11 x 109 L, and pllatelets 266 x 109 L.
At the time she saw me, she asked if I was having night sweats. I was not, nor had never, except the next evening I began night sweats, my temperature going as high as 38. 4 C , coming down with paracetemol and then going up again. I also have a hacking cough. This continues on and off all day (although the sweats are only at night) and I have little energy. My GP examined me and said that my chest is clear.
This has continued for 8 days now. I have also have been having some discomfort in a replaced hip that was infected 5 years ago. My GP has given me antibiotics and this now has lesssened. I am also a bit constipated, but not feeling discomfort from this.
We are meant to be going to Canada Sept 6-22nd, but at present I could not fly.
I am not sure how to understand this --is it the CLL or just a virus --and what to do about it? A friend who does not have CLL had similar symptoms for 2 weeks and then slowly got better.
Any thoughts most appreciated.
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JEEA
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I'm almost certain this is not your CLL causing it. It sounds like an infection. Did your GP do your bloods? Your CRP level would be a quick indicator if there is an infection in your body. Perhaps still ask for it since you are planning to travel. Have you done a covid test yet? If you haven't, you should do one as soon as possible to rule that out in the first place.
The CLL night sweats are something out of this world, honestly. If you had them, you would know straight away, they are completely different than the way we usually sweat when hot or unwell.
I hope you get to the bottom of what is causing your fevers.
My sweats are overwhelming. I soak my shirt about 6 times a day & have to change clothes. At night I change nightgowns at least twice, I wake up drenched in sweat. I get a cold washcloth and wipe down. When I take off my wet gown I drip water. Sometimes I need to change the sheets too. Usually when I start eating dinner, I get beet red and my whole body is drenched. I take a break, wash with cool water then change again. I never have a temperature, I am always below normal, 96-97 deg F. None of this is like any flu or cold virus this I have ever had. The first time it happened I was at an important work meeting, I began to drip water on the table, turned beet red and was very embarrassed.
Hi Lucy. WOW--now I certainly know what a night sweat is!!! What an ordeal you went through! What is interesting is that they come without a temperature. How common are they for those of us with CLL?
Does everyone seem to develop these sooner or later as they near treatment, or are they rare? My haematologist asks me about them every time I see her.
I have very aggressive CLL. Night sweats are what drove me to the doctor and CLL diagnose. I had night sweats for 3-4 months then lull in night sweats before finishing with 3-4 months of night sweats right up to treatment. Night sweats stopped one month after treatment started. I am having night sweats again because I am relapsing from remission. I don't know this for sure but suspect timing is based on time of year. I came up with work-a-rounds for night sweats to where i did not give them much thought. Blessings.
Good to know you are doing covid tests and definitely get your bloods done. You will have an indicator as to what's going on straight away.
Regarding the sweats, Lucy has already described what it's like for her.
For me - I had them just before I started treatment. I have never experienced anything like that. Mine were just at night thanks God. You really wake up several times a night dripping in sweat. It's like someone poured a bucket of water over you. I had to change several times a night, wipe my whole body with a towel and I started to sleep on layers of towels otherwise the bedding was drenched as well and so was the mattress. No fever. I was also sweating in "strange" places - my shins were literally oozing "water"...it's really quite strange...
Thank you Poodle and Lucy. Sounds very strange indeed!
CRP 64 April 14th when had haematology bloods done. Hadn't realised that they had done CRP!
About to head into local hospital to get bloods redone and chest x-ray. GP thinks CRP will certainly be much higher by now. Will be gone awhile!
Interesting that one sees only what one is looking for. My current hypotheses now that CLL ruled out with your help, is that this related to past hip infection.
Until a friend was monitoring her mother’s infection problems after a knee replacement she mentioned CRP figures that I had ignored, though because of sinus problems mine were also high at that time. But as your hip replacement was 5 years ago it seems strange. Hope you manage to get to the cause of your problems.
I agree with Poodle that you likely have a virus that is causing your v symptoms. The symptoms are consistent the new Covid variants but are common with many viruses.
Thank Cycle Wonder. Yes to know that it is sounding more viral than CLL from those who 'know'. I had Covid in late June and this is very different and as I said to Poodle, so far I have had 5 tests!
An update. In A and E most of the day. In the end I have a respiratory infection --a kind of pneumonia. CRP was over 200 apparently.
Getting sent home on two different antibiotics with daily follow up for bloods etc at hospital Ambulatory Care. They will advise if I am able to travel on September 6th or not. Because NOT CLL related, insurance should be fine.
In spite of the stresses on our beloved NHS--excellent, thorough, steady and kind care.
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