How to tell if CLL sweats or Menopausal hot flushes?

[AnjiP]

Hi, Angie here - 55 years old and 7 years with CLL, in the UK - for the past couple of months ive started having hot flushes during the day (nothing bothering me at night, other than when its hot at night here in the UK (which is not that often!! ) - and I have no idea if they are CLL related or the change (which i am finally in, not done bad to get to 55 without much of a problem due to the change) my last white cell count was 84,000, glands have been swollen but have been ok last month and infections have eased off too. I'm seeing the consultant (or locum again i guess, had so many now!) next week and will mention them, but i do wonder how they can discern the difference between CLL and menopause flushes? (photo taken whilst walking Camino in Northern Spain 2 years ago - not letting CLL get in the way of living!!)

[Newdawn Administrator]

Hi Anji and good question that has made me wonder over the years too. I'm a couple of years older and believe I've now past the menopause but when I was dx just over 4 yrs ago I couldn't be sure of the cause of my 'hot flushes' either. It's been hotly discussed on here (pardon the pun) and there was a poll on the subject of temperature dysregulation as I recall some time ago.

I now know that my extreme heat is CLL related because it feels different and has persisted so long. It's also much worse at night regardless of external temperature here in the UK. Hot flushes often occurred spontaneously during the day and were largely confined to head, neck and chest areas. The heat I feel now is more constant and not so much a flush/flash as a constant 'burn'. I'm sure it's cytokine related and increases in line with my rising ALC. That's my personal theory. It almost feels like my body is engaged in a perpetual inner war at night trying to fight off invading infection. Whilst I'm not yet having drenching night sweats, my upper body perspires very badly and absolutely nothing seems to cool me down. I'm up several times a night splashing cold water on myself and have been known to resort to nocturnal cold showers. And I mean ice cold showers when it's barely 2 degrees outside with no internal heat.

This heat can be caused by infection of course and also obstructive sleep apnoea so certainly worth mentioning to your Consultant (I know what you mean about locums!).

Good to hear you've continued to do so well for so long though.

Best wishes and nice photo!

Newdawn

[Shortcake2 in reply to Newdawn]

I'm glad I read your response, I was about to think I'm crazy. I have actually had only a couple of night sweats, but have numerous hot flushes in the day time, as you stated, in the head, neck and chest area. Just comes on instantly even when doing absolutely nothing. My dr says it's unrelated, unless it's night sweats. I didn't have anything to back me up until now. I'm way beyond menopause so I know it had to be CLL related. You just confirmed my thoughts. Thanks

[Emma_9 in reply to Newdawn]

Hello Newdawn,

I don't see an option to copy others, such as Anji, though I suppose all members may view and reply, as they wish. This is my first post.

There seems to be much more information shared about the affliction of CLL in the UK than in the US!

Newdawn, I have experienced the same symptoms as you, wondering if the hot flashes were continuing and wondering how long do I have to live with this!

I'm 61 years of age and diagnosed with CLL 8 months ago. As a W+W patient, the hematologist has offered no solution to the burning hot sweats experienced in the day. I can live with the night sweats, but the day time suffering is intolerable, and often debilitating! The hematologist says there is "nothing that can be done about that" !!! It is so frustrating!

Have you or any others found relief from these symptoms?! Any advice/guidance appreciated!

Kind regards,

Emma

[Newdawn Administrator in reply to Emma_9]

Hello Emma and welcome to the forum! Sorry that your first post had to be on the heat dysregulation that's making life difficult for you.

I think there's a tendency for medics to concentrate on conditions which cause pain and other sensations are viewed as more of a nuisance than a medical issue. So much is yet to be understood about heat, fatigue and joint pain in CLL in my opinion. The body of anecdotal evidence suggests that heat (other than drenching night sweats) is an issue and not only for women of a menopausal age.

There may be merit in exploring other possible reasons though and the obvious one is thyroid function because hyperthyroidism can cause temperature issues. Being overweight and sugar intolerance can also contribute though in honesty, even on a low carb/low sugar diet didn't and hasn't helped my nocturnal heat problems.

Hoping you can find some relief from this problem. Please feel free to post an introduction on the site telling us something about your CLL journey so far and how you're coping (tick to restrict it to the community).

Warm regards,

Newdawn

[Emma_9 in reply to Newdawn]

Appreciate your quick response, Newdawn!

I'll certainly post an introduction in the next day or so, as I learn to navigate through the site.

Just a quick comment about the thyroid --- I've had a visit 4 months ago with an endocrinologist, and she informed me that the blood test indicated that my thyroid isn't likely the cause for the body temperature issues. (Even though I have a lymphoma right on my thyroid!)

Considering seeking second opinion(s) from physicians --- since I feel I'm being passed around like a bag of peanuts!

all the best,

Emma

[AussieNeil Administrator in reply to Emma_9]

Hi Emma and welcome!

You can notify specific members of your replies by adding them into your message with a @ before their username. Just type the @ then start typing the beginning of the username and look for the one you want to appear below the submission box and then select it.

Neil

[Emma_9 in reply to AussieNeil]

Thanks ever so much for the advice, Neil!

kind regards,

Emma

[Fayeryan1 in reply to Newdawn]

Hi...glad you mentioned extreme heat with CLL...I felt like i had an internal radiator on full blast yet my skin was cool to touch ..frustrating in bed...i knew it was not the menopause as came out the other end of that now being 54 and that was different ..i can say though since treatment the extreme heat is now just a warm heat and i do actually feel the cold outside again ! I also experienced tingling all over the body on a night but this has also subsided a little since FCR...onwards and upwards 1 to go....😊

[Newdawn Administrator in reply to Fayeryan1]

Yes that ‘wonky thermostat’ is one thing the treatment has sorted.

It’s almost a pleasure now to need a sweater (but not this weekend). 🌝

Yes you’re on the final furlong now! Hope it’s a smooth race to the finish line.

Newdawn

[Elizabetha]

Good question. I was expecting 3 years ago and although have not really experienced night sweats as described by fellow CLLers I have developed a very"drippy" forehead. Could be the menopause however not 100% sure that this is the case. Just back from Italy and fear I have wiped the tan off my forehead with constant mopping!

Hope that your flushes ease and that you continue to live life to the full😂😓😄😅

[AussieNeil Administrator]

Here's the poll on temperature regulation mentioned by Newdawn : healthunlocked.com/cllsuppo....

I sympathise with our members who are faced with the dual challenges of menopause and CLL related temperature dis-regulation. I find those due to CLL frustrating enough, the way they happen without warning and often it seems at the most inopportune times. At least I don't face the quandary of knowing which condition is responsible . I can't even say that if the hot flushes stop then they must have been due to menopause, because lately I've been doing far better despite my latest lymphocyte count being four times higher than it was when temperature regulation problems were affecting me night and day. As Newdawn says, cytokines - the messenger chemicals produced by lymphocytes (normally as part of the immune response to infections) are considered to be the likely cause. Given CLL cells are now understood to be in their active phase while they are in lymph nodes and quiescent when in the blood, I suspect any correlation between temperature dis-regulation and blood lymphocyte counts probably reflects growing node activity or perhaps sub-clinical infections that due to our compromised immune systems, are more common and longer lasting than is the case for healthy people.

Neil

[lorna222]

Thank you for posting that question. I was diagnosed about 4 years ago, am 56 now. The night sweats from menopause don't wake me up but the second I am conscious it hits me. I've been on a hormone compound creme which my oncologist says is fine. I still have the hot flashes but not as debilitating as before - they were really unbearable combined with the fatigue from CLL. My Dr. asked me about night sweats and as you posted above, I do not have drenching NS thank goodness, so for now its still wait and watch. I see him every 3 months for blood work, and if and when to begin initial treatment is really up to me. My question is this; When did you decide with your Dr. it was time to begin first time treatment? I'd really like to know what fellow CLL'ers think.

Thank you:)) for all of the great info, it helps.

Lorna

[HappyCatUK]

Hi, I am logging my own experience here in case it helps anyone. I was 55 at CLL dx, and at that time was having very bad night sweats and consequently felt very tired. I didn't think this was menopause related as I thought all my menopause symptoms had finished when I was 52, but my haemotologist wasn't convinced it was CLL causing them. So he recommended that my GP put me on low dose HRT to see if that helped. Well, within a week or so the night sweats stopped completely! I was told that post menopausal hot flushes and night sweats can continue into your 70's!

A couple of years later the night sweats started up again. My GP increased my HRT dose slightly and all was well again. Then recently my GP wanted me to come off the HRT due to a breast lump that needed investigating. Well, the night sweats and daytime hot flushes returned with a vengeance! And I am now 61!

Anyway, happy ending. ...breast lump benign and now back on HRT. Body temperature under control again and back to a decent night's sleep, apart from some very late nights watching the Olympics of course!

[AnjiP in reply to HappyCatUK]

Thanks for sharing your story and information, i will bear both low dose HRT and the creme in mind if it gets unbearable, right now to be honest, its a novelty, i have Raynaud's Syndrome too, so being warm/hot is actually quite amusing!! So happy for you that the lump was benign!! Anji x

[HappyCatUK in reply to AnjiP]

Thanks Anji, good luck with your temperature extremes . ..would be nice if they cancelled each other out!

[lorna222]

Thank you HappyCat- Wonder why no one ever told us about these hot flashes into our 70's! WOW that's crazy and miserable. My Dr's won't put me on HRT due to a past scare with breast cancer although it was DCIS which many say is pre-pre cancerous, so hence the creme which does help some and I'll take it! Glad the lump was benign as well:))

[HappyCatUK in reply to lorna222]

Well, I'm pleased that the creme helps you Lorna. ...and it's good to know there is something else out there if conventional HRT can't be taken for whatever reason.

I too was surprised (and dismayed! ) to hear we can have temperature control problems so long after menopause but, thinking back to when my dear mum was alive, she could never sleep with more than a light sheet over her, even in a cold English winter. ..we just thought she was made of tough stuff but I'm now thinking it was probably due to night sweats and nobody had realised!

[Peggy4]

Agree with all the previous comments. Which indeed? I suffer very hot flushes also and although they are becoming more frequent, nothing like the bed drenching night sweats that some have and mostly day time in my case.

Peggy

[lorna222]

Good to read all of replies and input! The creme I use is a compound made by a local pharmacy and contains Estriol and a bit progesterian. My OBGYN freaked out and said this would put me at risk, my oncologist dismissed it. Besides since the creme does take the edge off I really think the 'risk' is worth it since with the hot flashes full on, my quality of life was terrible. The fatigue from CLL combined with the hot flashes just had me in tears many days and I'm not the wimpy sort!

I did have luck for a few years taking Black Cohosh but then it just stopped working? So when all is said and done I guess starting treatment depends on if you have the drenching night sweats and of course your numbers from blood work.

Thanks again for all the replies:)) It helps to be able to share this stuff with people who can relate!

[PopEine]

Hi, I'm 46 and started going through early menopause at age 42. I was diagnosed CLL/SLL a month ago. The night sweats I was getting recently were different to those I was getting due to menopause - I was having them every hour all day and all night.

My night sweats have stopped since I improved my already healthy diet even more!