I am newly diagnosed Chronic lymphocytic leukaemia (CLL) I am having overwhelming hot flushes (I am post menopausal) and daily headaches. Not sure if these are related to Chronic lymphocytic leukaemia (CLL) or not. Has anyone else had similar symptoms?
Hi @KayC you must be in complete shock and I am glad that you have posted.
The Blood Cancer UK website has a lot of helpful information for the newly diagnosed and on Chronic lymphocytic leukaemia (CLL).
The overwhelming hot flushes are a common symptom, but it might be worth checking your daily headaches out with your medical contacts to be on the safe side.
I have Chronic lymphocytic leukaemia (CLL), and I was diagnosed 19 yrs ago and I have been lucky enough to always be on a watch and wait regime, sometimes called active monitoring. Other patients might have treatment straight away or at any time.
I would be very interested to hear more about you and I am always happy to answer any questions you might have or share my experiences.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
Please don’t underestimate the shock you have had and be very kind to yourself.
Thanks for your response and so reassuring to hear how long you have been on watch and wait which is what I am on. About me. I am 61 years old I have been a nurse for 44 years in various roles as a midwife, health visitor, manager of a safeguarding children team and am now part time as a forensic nurse examiner. Very busy and often stressful career I have always been fascinated by the law and got a masters degree in law a few years ago. I have 4 grandchildren who keep us busy. Have always kept pretty fit so the fatigue is an issue as I am having to reevaluate how I exercise I have a lot of good friends but again think I need to step back on my social life a bit. Basically an energy ball so this Chronic lymphocytic leukaemia (CLL) is very frustrating!
Thank @KayC I was diagnosed at 53 yrs old.
So you were a nurse and now the patient, interesting for you to see medical issues from the other side.
Yes, i was always a really busy person with a full time job in local government for the last 20 yrs and 2 part time jobs one as a part time Registrar of Marriages and a part time job in counselling, having done all my training in evening or weekend classes.
Diagnosis and fatigue hit me and I had to give up the marriages as I was also very faint and that was not good whilst conducting a wedding !!
I have revaluated my life and who and what are important to me and I have learnt to manage my fatigue by exercising and socialising earlier in the day, I don’t do evenings and I ‘try’ to pace myself and sometimes have a nap.
Life is really good for me and I am fitter now than I ever have been, I enjoy walking and Pilates.
I am so impressed with your law masters degree and you will manage your exercise and socialising, good friends are priceless, just give yourself time and be kind to yourself
Thank you so much for posting. I am so sorry to hear you are experiencing these symptoms. May I ask whether you are on any treatment for Chronic lymphocytic leukaemia (CLL) or are you on Watch and Wait?
Our information regarding symptoms of Chronic lymphocytic leukaemia (CLL) is here CLL symptoms and diagnosis | Blood Cancer UK and although your symptoms are not written here it doesn’t mean that you shouldn’t report them. As you will know headaches can be caused by a number of issues including anaemia. When you have hot flushes are you sweating with them too?
I would advise relaying these symptoms to your Haematology team or Clinical Nurse Specialist.How to contact Blood Cancer UK | Blood Cancer UK
Do call the Support Line if you need to talk things through:
Hi. Thanks for this. Yes I am on a watch and wait. I have had the headaches for months but my haemaglobin is really good so it’s not anaemia. Possibly unrelated. I don’t sweat profusely with the flushes but go very red and hot. I have told the haematologist as was only there 2 weeks ago and they don’t seem concerned. It’s uncomfortable and annoying more than anything
Hi @KayC I have been thinking of you and I am wondering how are you feeling now?
Look after yourself
Hi Erica thanks so much for thinking of me. I’m doing ok. Struggling with fatigue a bit but have had a good day today. I went to a legs bums and tums class this morning and really enjoyed it. I think I’m starting to feel the benefit of joining the spa having some time to relax but also trying the various fitness classes is making me feel stronger. How are you ?
Oh @KayC I have always fancied going to a legs, bums and tums class.
I think joining a spa is so beneficial for just taking some time for yourself and the opportunity to try different classes.
I am doing well thank you and managing to keep my walking steps up by going out early in the morning. I have to wear a hat as I have had skin cancer on the top of my head twice, my sparse hair was ringing wet when I got home and when it dried I was left looking a mixture between Friar Tuck and Worsel Gummidge !!!
Look after yourself
Haha I’m sure you didn’t but I think this hot weather has us all a bit wrung out Keep up the good work with the walking. I try to get out too and I live 2 minutes walk from the beach so that helps Take care x