Please share your CLL temperature regulation e... - CLL Support
Please share your CLL temperature regulation experiences, ticking all that apply, and add comments on frequency, known trigger factors, etc.
AussieNeilAdministrator163 Voters
When first diagnosed I experienced severe regular night sweats " drenchings" for two years and the CLL was blamed.After emergency heart surgery and stenting this subsided for a year. coincidentally I have been admitted to hospital for an angiogramme and possible intervention again next week. The regular night sweats "drenchings" have returned
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I suffered mild night sweats, but never drenching sweats prior to treatment. Ironically I had a bout of drenching night sweats within a year post treatment during the course of a chest infection.
I had night sweats for a few months but these stopped when I came off some medication that was causing more problems than it was solving. Still get drenched during the day even pottering in the garden, picking blackberries or walking. So often have to change cloths once or twice a day.
My internal temperature regulator is on the blink and my model is obsolete. At night I feel clammy.It's a symptom of CLL that the Dr's don't seem to understand and don't treat.
Have mild sweats/dampness day and night. I am newly diagnosed with CLL and don't know if these sweats are due to menopause or CLL. I do know it is very embarrassing to be the only beetroot among friends.
It's pleasing to see an early high participation in this poll, but I'm not surprised, given the poor understanding and lack of ready solutions to help with this inconvenient and frustrating symptom that many of us live with. Dick (Kwenda) had hoped to achieve a more scientific study, but we couldn't see how to achieve this at present. Hopefully responses to this poll will provide evidence of the need for a serious study into the underlying causes and hopefully provide some breakthroughs, so please join in and provide feedback that could help attract some serious research interest in the future. Your replies will be of great interest.
Personally, I never had night sweats until a few years before my SLL/CLL diagnosis. I'm still in W&W and haven't had drenching sweats for a while, but often do wake up damp and have trouble getting back to sleep - even on a cold night with most of the bedclothes discarded. I've also experienced sweaty turns that have left me feeling really ill while out shopping - probably triggered by my inability to compensate for the temperature transition entering an air conditioned store. I'm fairly definite that my body temperature regulation became wonky after my CLL became well established. While there may be another cause, I can't see how sleep apnea could cause problems during the day and it is definitely not menopause!
Frequency of the damp spells is variable. I can have up to several damp episodes a night, have one or more regularly for a week or more, then go for a week or more with none (that I'm aware of). Frustratingly, getting to a comfortable temperature so can I drift off to sleep again often keeps me awake for an hour or more.
For daytime wear, I now prefer tops that I can quickly adjust to accommodate my sudden temperature swings. Daytime events thankfully have abated; they were far worse a couple of years back. For many months after my bout with CMV, I would often spike a high temperature late afternoon or early evening that would resolve in an hour or so. This corresponded with a time when I suspect I was frequently fighting off infections.
I suspect that the immune compromise associated with CLL extends to a disruption of the temperature regulation mechanism our body normally uses to aid us in fighting off infections by the controlled raising of our core body temperature.
Neil
I am 53 years old and 5 1/2 years since dx, still on W&W. This year I can't seem to keep my temperature regulated very well. I don't think it is menopause caused, any stressful emotional/thought or physical stress will trigger a heat/sweat episode.
I can totally relate to “stressful emotional/thought or physical stress will trigger a heat/sweat episode”. I’m 59 y.o. now and just diagnosed with CLL in March 2018, but have had problems with temperature regulation for years. Besides it possibly being caused by menopause, doctors never had a clue as to why. It’s been awhile since I’ve been done with menopause. The “heat” is annoying, but once the daytime sweat begins, it takes forever to get dry and stay dry.
I have been W & W for 3 years, although records show that I had a high white count a few years previously which was put down to an unidentified infection. The only drenching sweat I experienced was just prior to diagnosis when I had given blood. This was accompanied by a node on my neck, investigation of which resulted in my diagnosis.
Similar to many here, there are many times during the day when I get what I refer to as 'the hotties'. I cannot tolerate warm temperatures well, and there does seem to be a trigger when moving through temperature changes.
I think it would be interesting if someone monitored how many times I get in and out of the bedding in the night. Love to go back to blankets, but my partner has arthritis rather badly and needs the warmth.
What does concern me and I have seen others mention it on the site, is that my mentioning this symptom and the breathlessness to the nurse when I was having my blood checks done, resulted in my being told my lymphocyte count was not high enough to give me any symptoms at all. H'mm I beg to differ.
Seems it is so easy to forget by those that should know better that just because a blood count is cheap and easy to measure, it doesn't necessarily tell the whole story. You can have massive abdominal nodes and a highly infiltrated bone marrow yet have a low ALC. And let's not forget those that have an SLL presentation where there is little or no blood involvement. I too beg to differ on this; In addition to the readily dismissed temperature regulation problems, I too have mentioned tiredness/breathlessness to my GP only to be told "well your red blood cells/haemoglobin counts are high enough to not be the cause."
I find that even a hot drink can trigger a sweat, very embarrassing at work.
Be sure to follow up on the breathlessness! It may not be because of a low HGB - been there done that, especially when it went down to the 8s. I also have a mitral valve prolapse which isn't severe enough for repair surgery yet (hopefully never!!!!) but when it acts up the symptom of breathlessness and overall feeling is identical to the way i felt with a low HGB. Don't let health care professionals write off this symptom as nothing! It's important to look beyond CLL for some things. That includes sweats, but when everything else has been ruled out CLL is left standing there on that one for me.
Breathlessness.. I would have a test for B12... I have no intrinsic factor and have pernicious anaemia, which was masked by CLL... monthly B12 jab corrected it and made a huge difference in my mental well being...
Chris, you've mentioned several times the importance of getting your B12 levels checked, which makes sense given its importance in haemoglobin production. Do you know of any good papers covering this in association with CLL?
With a bit of searching today, I came across this relevant paper, where the authors report improved alertness later in the day in subjects given B12 (when according to a previous poll, fatigue is most likely to affect many of us). Interestingly this 'almost coincided' with a lift in body core temperature.
ncbi.nlm.nih.gov/pubmed/767...
Thank you Neil Chris and pkenn, I'm taking your comments om board and next visit will request the check you advise.
Bub
No papers that I know of Neil, this recommendation, is from my own experience and that of other patients over the years... as we age, our ability to uptake B12 from food is reduced, so it just makes sense to have B12, VitD and folate tested. Simple blood test. I also had H.pylori, terrible gut issues, which may have contributed to a lack of intrinsic factor, hence no B12 uptake. H.pylori, also is implicated in CLL , idiopathic thrombocytopenic purpura (ITP) , so it may be worth checking also.
I have never had night sweats save for when I first got CLL which triggered it off. My levels were normal and then I got some sort of infection which doctors did not understand, my symptoms were drenching night sweats, the days were normal, and a strange symptom that can only be described as a vice on my head. I would wake up shivering in a pool of water, this lasted for a week and disappeared with a course of strong antibiotics. This happened eight years ago and since then it has not happened. After eating in the summer I sometimes sweat for a few minutes and again in the summer at night if I start the night with too many clothes on the bed I may wake up with a slightly wet vest on my chest but this soon changes by removing some bedclothes,it does not happen in the winter unless the temperature drops and the central heating comes on normally overheating me without sweats but again adjusted by removing some bedclothes for a while. I do find that the right bedroom temperature is crucial to a good nights sleep otherwise I may stay awake for hours.
My husband started getting occasional night sweats about 18 months before he was diagnosed with CLL. when he has them he is absolutely drenched.
I think that my inner thermostat is broken now.
I get a sudden rush of intense heat when I wake during the night and from a daytime sleep too. I can feel the heat of a fever but rarely does the thermometer register above normal. In fact often when I feel hot, as if I have a high fever, the thermometer reads only 35.5. This makes it difficult when trying to determine the presence of an infection.
Does anyone else regularly show very low readings on a thermometer?
sparkler x
Sparkler,
Check out:
en.wikipedia.org/wiki/Body_...
Even with the normal variation mentioned in the above link, I'd say you are far from alone in having a lower temperature than your feverishness suggests. From what I've read, it isn't unusual for CLL patients to show less of a body temperature increase than those without CLL when fighting an infection. I'm glad you have an understanding GP!
Neil
I was first diagnosed with CLL over 25 years ago, so I guess that makes me an outlier. I didn't have any symptoms at first other than some mild swelling of lymph nodes in my neck. After 12-13 years of W&W, my blood numbers began to get screwy (esp. WBC>200) and I was treated with IV Rituixan, together with monthly IVIG to maintain immunity. Over the next decade, I have had almost every first line chemo treatment, all without noticeable side.effects. My oncologist always asked about night sweats, but I can't say it was ever a noticeable problem. I had excellent temperature regulation: I was comfortable at almost all temperatures, except at peak summer heat with high humidity, when I had the same discomfort everyone else seems to have.
Fast forward to last year: my periodic chemo treatments are being less effective. I'm now 78 years old. New oncologist (my former one passed away) gets me on newly-released targeted therapy drug, Ibrutinib, starting about eight weeks ago. The good news is that my spleen and lymph nodes have shrunk to almost nothing and I am generally feeling much stronger. Blood numbers are improving too. The bad news is that I now feel like my internal thermostat is broken: I feel chilled much of the time (never previously a problem) and I have to keep the house heat turned up about 4 degrees F (much to my wife's dismay) and wear a sweater. I do live in a cold climate. I get colder after lunch, then by dinner time I am OK and ever later am too warm. Then at night I'm cold again and need an extra blanket. No night (or other) sweats at any time.
Haven't heard much about other Ibrutinib users with this problem, but maybe that's because the drug is so new to the market.
I,too have a broken thermostat. My temp. Is almost directly related to temp. Surrounding my skin. Always fearful of infection, Dr. Says go to emergency room. As soon as I get ready to go.....98.6! Until I read your report, I was mystified and now not so. Thank you! (Ibrutinib for only two weeks) I have the normal fatigue, muscle soreness, joint aches and headache as well as a cough, but am forging on with great hope!
There is a situation called febrile neutropenia, where you get a fever as your neutrophil count drops...
Neutropenia is a side effect of Imbruvica (ibrutinib), not sure if it is febrile, something to call your doctor about...
Hard to tell if sweats are CLL or menopause. My menopause hot flashes have never gone away with passimg time. Seem more frequent now with CLL , especially at night. I am on watch and wait, diagnosed last May.
CLL night sweats are unmistakable... often you need to change the wet bedding and night clothes etc...
I feel like my body thermostat is broken I'm constantly breaking out into hot sweats day and night, hot weather is no good for me but my lungs do better in the heat heart a beach, but I crave for cold winters now! Sooo confusing, also I'm 52yrs so don't know if some of it is menopause, I had a hysterectomy 9 years ago but still have my overies, don't know if it's the CLL, I'm in WW!👼💖🌟
I hope it helps to know that you are not alone. Here's some recent discussion on this little acknowledged by medicos but very real symptom:
Thanks Aussie Neil I wrote a note about my experiences yesterday, but I have been getting hot flashes more and more regularly, now about 6 a day, day or night no difference, when they happen my husband says I feel really hot and clammy to touch, but I haven't had flushes where I am totally sweated through dripping wet, thank God! but I do perspire all over, usually I am at home so I can just strip down quickly, I find an ice freeze pack really helps, I had this behind my neck last night they are a real relief!
I experience higher levels of fatigue in the warmer temperatures. Also some cramping of my intestines.
