Hi All, re my earlier post on night sweats, can anyone tell me when it is time for ‘Intervention’.
I have had three really bad nights of sweats, a few weeks ago, just after a minor Op, which took a long time to recover from.
They have come back, but not as bad, lots of neck sweating, and some dampness on bedsheets.
If they continue into the New Year, I will see my GP and Consultant again, if necessary, in the meantime, has anyone any experience of similar?
Thanks all, and all the best. Ron.
Oh @Vindicatrix you really are going through it
The night sweats sound horrible.
Yes, if they continue then it definitely is something to see your GP and Consultant about.
I hope someone can help with their experiences.
Please let us know how you get on.
Look after and be kind to yourself.
Thanks so much Erica, I will keep you updated, and look forward to input re others experiences. I am conscious if the fact that prolonged night sweats may need some type of intervention. But I will deal with that when it happens. Regards Ron
HI @Vindicatrix,
How are you doing today? I am sorry to hear you’re having recurring night sweats. Am i correct in saying that you have a diagnosis of Chronic lymphocytic leukaemia (CLL) Ron?
It is a good idea, as you have mentioned, to alert your medical team to your night sweats so they can appropriately screen your bloods and do a check of you over all.
Nights sweats can be a variable symptom for those living with blood cancer but if this is something worsening or new for you- please do get in touch with your haem team. Don’t hesitate to call them in between scheduled appointments in order for you to be reassured & checked over.
It can also be helpful to keep a diary of how frequently they are occurring to give your team an accurate reflection.
Do also know that if you wish to talk anything through our support team are always on hand to do so- 0808 2080 888.
I hope you are well otherwise Ron?
Take care, Lauran?
Hi
sweats have been with me for several years, particularly on my neck and body. I have cotton sheets plus 2synthetic cellular blankets. If very cold then I sling my dressing gown on top.
I find it important to have light layers so that I can adjust the warmth easily by adding or losing a layer. Cotton nightwear too. I add an old cardigan when very cold which I can easily lose if feeling too hot.
The above works for me as I cannot bear the weight and warmth of a duvet.
Christmas shopping despite wearing a mask,has led to me gaining a chest and sinus infection, fortunately INRnurse decided that I needed to see someone, so had chest and sinus infection confirmed and a prescription for antibiotics. Hope I feel better in time for christmas, all the family are coming here to celebrate, I will not have to do anything but did want get rid of all those untidy little heaps of papers and bits that need putting away that older people seem to accumulate.
Happy Christmas to all, Marylin
N
Thanks you so much for the information Lauran. I will indeed see my GP after the Xmas break. I saw my private consultant, 5 weeks ago, and he knows of the early three day night sweats, but not the recent ones.
I will contact him, he did tell me initially, when I moved from NHS to Private consultations, that if the time ever came for Intervention, I would have to go back to the NHS team.
i am anxious not to do so at the moment, as I am hearing disturbing stories, of the varying types of interventions, by our NHS Hospital. Some are being done by phone, with no physical. That was part of the reason I went Private.
I will keep you informed, of the outcomes, and thanks again for the helpful advice. Ron
I will just have to hope that the sweats are not bad enough to have to transfer back.
I empathise with you, Marylin, you seem to be managing without ‘Intervention’ at the moment, and coping well.
I have only had two weeks so far of the neck, and body sweats, and fairly damp sheets, so I’m hoping I can last out, before I have to have more treatment.
All the best. Ron
Hi @Vindicatrix
Everyone has given you great advice. I am a fellow sufferer. It’s very easy to worry it’s connected to our underlying medical conditions, but it can also be other less worrisome issues like for me delayed symptoms of menopause. I have worried myself silly that the recent night sweats are lymphoma playing up but that’s fine and stable and after a check with my doctor, it is my hormones getting back to normal as time elapses since treatment and I’m actually now experiencing menopause symptoms. I’d managed to get away without them for three years so count myself lucky.
Always best to get things checked though.
Take care
I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2014 and only started treatment this year, yet I had bad night sweats every night for at least the last 3 years (definitely not the menopause as I had that in my early 40’s and my night sweats started around 56). This alone was no reason for intervention - the doubling of lymphocytes in 6 months or less is usually the trigger for even considering treatment, plus poor neutrophils and platelets etc. Believe me, for Chronic lymphocytic leukaemia (CLL), they prefer not to treat until you have pretty poor symptoms and bad blood test results, so I’d assume you are some way off requiring any treatment. Of course, your consultant will advise you at your next appointment (I presume you have a face-to-face every 12 weeks with them?). Good luck anyway, hopefully your night sweats will calm down!
Thanks Jules, no not the menopause with me, my GP said it could be the result of an infection. It has actually cleared up over the last week or so, so she may have been right. Although when she checked my Bloods, White Cells had gone up 9 points, and she has referred me back to my Haemo my man. Thanks again for the info. Regards Ron
Thanks so much Space Angel, your information was helpful. The sweats have more or less gone, but my White Blood cells have gone up 9 points so my GP has referred me back to my Haemo man. Thanks again.
Pleased your night sweats have stopped - sounds like it could have been linked to infection?
I thought I’d pop on and reply as I had terrible night sweats for years before I started treatment, but my goodness, I’d swap the symptoms from the treatment for night and day sweats in a heartbeat!
I have never felt so poorly - I am on morphine for the pain which is a result of the treatment on my bone marrow and I have lost almost 3 stone in about 13 weeks. My hair is patchy and I feel permanently fatigued. I was not too bad during cycles one and two, but I’ve just started cycle 5 (of 12) and I detest it!
So, I hope that your care team deem treatment as unnecessary for as long as possible, because, believe me, the treatment route (for me at least) is devastatingly bad!
Gosh @SpaceAngel you are really going through it ad feeling so poorly.
I just do not know what to say.
What do your care team say?
We are here for you and if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Please be kind to yourself and keep posting what is going on for you.
Thank you for replying. I have an excellent CNS who I see every week after my blood tests and she is very empathetic and my pain management is kept under review by her and my GP, so I feel well cared for. Everybody, of course, will react differently to the different treatment paths and I think I am ‘normal’ having the side effects I have, but there are many others which are common from which I am not suffering, so it’s the luck of the draw!
I don’t need to speak to anyone as I am a psychologist myself and probably the worst type of person to have to do talking therapy with!
I was on a video call with 5 other blood cancer patients last week and it was (sadly) reassuring that I am not alone in having these side effects to deal with - one poor lady had to give up treatment after 4 months as she couldn’t cope and the others also described horrendous journeys through treatment.
I only have 6 and a half months left of the chemotherapy and once it’s ended my CNS has warned me that the effects can take 6 months or more to get over the impact of the drugs, so I am focussed on this time next year, when I aim to re-enter society with a bang!!
Like everyone one of us with some form of blood cancer, I have bad days and better days; just as those without a chronic illness, it’s life! I am a strong, stubborn woman and won’t let this stop me from completing the treatment, but boy is it worse than I had imagined! I explain more about my life with Chronic lymphocytic leukaemia (CLL) in my blog: www.mybloodycancerjourney.co.uk and you will see that I am more of a glass half full person, but also brutally honest and open - I don’t sugar-coat things as I want to help others with any type of cancer to know what the reality of treatment is for me, at least!
Thanks for the interest Space Angel, and I am so sorry to hear about your experiences since treatment started, You are obviously going through a dreadful time. But the results of the treatment will hopefully kick in, sooner than later, so try and keep the ‘Bottle Half Full’. I will certainly try to put off any kind of treatment, for as long as I can. The odd night sweat, I’ll manage. All the very best. Ron