First real night sweat

[Vindicatrix]

Hi All,

I have just had my first introduction to a medium night sweat, having been diagnosed in June 2018. Being an 'Olympic Class Worrier', I am off course panicking.

Can anyone enlighten me as to what this means in real terms. Should I wait until my next Hemo Check up, before I mention this to my Consultant.

I am also getting biopsy's done on three new neck lumps, on Thursday.

I am also feeling Fatigued, Naseous at times, and a little dizzy at times.

Further to that, I have just had two basil cells emoved from my leg, and a split skin graft applied.

I have also had numerous tests for Stomach problems, ongoing.

On Saturday I received my 4th Vaccine, and had a bad reaction, with a sudden 120 pulse rate, which went back to normal 4 hours later.

I informed my GP and he was not too concerned about that, as it is seemingly one of the side effects of the Vaccine.

Any information about my night sweat would be very helpful to me. Thanks Ron

[Sepsur]

In my case they were the precursor to needing more intrusive treatment. Up until this time I was on monthly IVIG infusions.Within a year of starting drenching night sweats, I’d started on FLAIR trial.

I suggest sleeping on a towel to start - a get ready to change your bedding

[cllady01 Former Volunteer]

With your current investigation into whether you have an infection, I'd think there could be some possible fever on occasion--IF there is infection. And fevers seem to rise at night, so perhaps a fever arose and broke--thus the sweating incident?

Just a stab in the dark. I know you plan to ask for a CBC once there is an outcome with the biopsies.

There are many causes of night sweats, as this Mayo Clinic article suggests. If you are on other medications, or do have a significant infection, those might explain your night sweat.

mayoclinic.org/symptoms/nig...

I know leukemia is one situation that can trigger night sweats, however, it is only one in a long list of possibilities. I am grateful to know you are getting a biopsy of the places on your neck as that is a beginning of discovering why you feel so lousy right now.

Best wishes that the biopsy will help uncover what is making you feel lousy and lead to getting you feeling better.

[Vindicatrix in reply to cllady01]

Thanks for that warm heartening and informative reply cllady01, it really helps. I hope your own CLL situation is manageable for you at the moment, and that you are well. Regards Ron.

[Pin57]

Ron - Read your bio holey moley I thought I was reading my own … from early CLL W&W, a TIA did you get your TIA same time of CLL dx?(mine was same week!)… same exact meds and now nite sweats just like I had … in fact that issue was my first post on this forum a year ago.

Scary twins sameness ! Anyways, a bit of positive “hope” is that your nite sweats pretty much disappear like mine did wo need for doc intervention. My CLL doc wasn’t concerned about my sweats n I often wonder if the TIA-CLL dx happening didn’t induce stress which triggered the sweats? Just my own dx.

Anyways let’s hope our “sameness” proves out same with the sweats and they simply wean away. Mine once in a blue moon crop up but again with other stressors happening makes me point to that as cause. Don’t have a scientific medical reasoning to pass along for the sweats except it’s a fairly common thing we CLLers experience.

Good luck finding out cause and a remedy or that they wean away.

[Vindicatrix in reply to Pin57]

Thanks very much for that Pin7, I had the TIA, then I had an op to clear my artery, they had noticed an old neck lump, did a biopsy, and I was then diagnosed. All in the same week. I think I may have had the CLL some time before the TIA. Seemingly, it is common for it to be discovered, as a result of something else.

That was nearly 4 years ago, and I have been on Watch Wait since then. I am presently having three new lumps Biopsy'd, and seeing the ENT man after that. Their may be a connection with all this.

But whatever happens I will see My Hemo man, and hopefully he can explain what is happening, and if I need any interventions.

Yes we seem to have been on a similar journey, and that is what I like about this Website, we all seem to get good advice and comfort and solace, from each other. Thanks again, your info was so helpful, and I wish you all the best with your Journey! (Not my favourite term, but you will know what I mean)

Regards Ron.

[LuzyCLL]

I had awful day and night sweats for two years before diagnosis of CLL

[Vindicatrix in reply to LuzyCLL]

Thanks Lucy, I am trying to get to the bottom of all this, will keep you updated. I hope you are in a good place at the moment, Regards Ron.

[Big_Dee]

Hello Vindicatrix

I will repeat my earlier post on my night sweats.

Good question. After putting some research into this, I haven't a clue. I was diagnosed with CLL because I went to see my GP because of night sweats, which concerned my wife. After being diagnosed the night sweats occurred about 1/3 of my nights for 3-4 months. After the first 3-4 months, my night sweats stopped. My night sweats started up again for last 3-4 months before treatment. night sweats stopped after treatment. I had very aggressive CLL in which my WBC climb never abated, graph looked like a hockey stick. I was never able to find out if my night sweats played any part in my progression of CLL. I considered the nights sweats an inconvenience and did not induce me to have treatment. My work-a-rounds were buckwheat pillow and 3' x 4' quilted hospital bed pad, which absorbed the sweat and kept me cool enough where changing sheets in nighttime and etc was not required. Blessings.

[Vindicatrix in reply to Big_Dee]

Thanks very much for the info, Big Dee, it was very helpful, I will be happier when all the tests I have coming up are done, which should be soon.

I hope you are going through a good period yourself at the moment, and if you are, long may it last.

Kind regrads Ron.

[SofiaDeo Administrator]

I was told that night sweats can be a B-cell symptom of CLL. Some people get them, some don't.

medicalnewstoday.com/articl...

I wonder if you might have more of an (early) SLL presenting disease, since your pre-op bloodwork for the TIA related stuff didn't have abnormalities. And also because of the GI issues and ENT issues. My sinuses and other head/neck lymph nodes definitely react with changes in my CLL. And I don't have a lot of "large" internal nodes, but I have had GI problems when my disease was actively growing and those internal nodes were changing. I was in a study at the time and got a series of CT abdominal scans so I know they were changing. As well as my spleen enlarging. My GI problems largely resolved after being on successful treatment a while. Have you had any kind of CT to verify size of internal nodes? Or head/neck nodes? Has your hem-onc considered node changes contributing to any of your ENT or GI problems? I am not saying CLL internal node changes are absolutely the cause of these problems, but they might be contributing.

If your night sweats, fatigue, nausea, and dizziness are having a major impact on your ability to "carry on with life activities", you may want to inform any doc you can see (GP or hem-onc) sooner if nausea and dizziness especially, are severe. If you are so fatigued you can't walk easily/get out of bed, or have trouble easily breathing, please get to a doc or urgent care ASAP. Also if it's progressed significantly since you thought you had an infection last week. IDK when any previous bloodwork was done (was there some done pre-biopsy preparation?), but am surprised that your doc didn't do any bloodwork when you indicated you had infection concerns. I'll mention since I got CLL, I have *never* gotten an elevated temperature, even with documented bacterial and viral infections. I barely make it to 98.6 F. Since your body can now be changing over time as the CLL affects it over time, IDK if it's safe to assume previous "minor" issues may continue to be minor.

I do think that being post-op with surgical wounds, there's a possibility some of this is related to fighting off any normal skin bugs entering the wounds, or effects of "healing". If you are trying to follow the same schedule (work, exercise, chores, leisure activities) on top of healing, that might account for some of the fatigue. Unfortunately, some of us find it takes significantly longer to "recover from" various things when CLL is active.

[Vindicatrix in reply to SofiaDeo]

That was extremely helpful Sofia Dee, at the risk of repeating myself, via the email reply I sent. I am happy to wait till after the Biopsy results, and bloods. I will then see my Hemo man, and hopefully he will get to the bottom of this.

When I was first diagnosed four years ago, I had Peta Scans, as well as Neck scans, and all was ok then. I have also had Cat scans of the lower and upper stomach which show several Lymph nodes, consistent with my CLL, and which the consultant was happy with.

I suspect the next step after Thursdsay, will be another Scan of my neck.

Thanks again, and stay well.

Ron