Jillychoo

[Jillychoo]

I have CLL and am on watch and wait. I have been getting headaches at the back of my head and to one side. I’m wondering if this is a symptom. Also how bad to night sweats have to be to cause concern? Any advice welcome.

[Marie_14]

Well I think you should see your consultant. Nobody should have to suffer if there is something which can stop it and there is! Certainly as far as night sweats are concerned my husband was on Jakavi or Jakafi in US. He was very good on it and went into remission. There are other drugs too. So make an appointment asap.

Marie x

[Ricky234]

Hi Jillychoo, sorry to read your discomfort, When do you see your haematologists next? It is worth talking to them about potential symptoms and your concerns, if nothing more than to put your mind to rest, do you have a clinical nurse contact?

It would be wise to see a doctor/your GP, If you are getting headaches, it may be nothing to do with your CLL and should be investigated.. From what I understand CLL can involve lymph nodes that may be inflamed during an infection it could be contributing?? As for night sweats, I guess real concern for me was when mine were drenching me and my bed cloths on a regular basis, if you are experiencing increased nights sweats, on a regular basis, as Marie suggests talk to your haematology consultant or clinical nurse contact (if you have one).

I believe Jakavi/Jakafi is a treatment for MPN not CLL, but that said, when I eventually needed a treatment for my SLL/CLL, symptoms reduced. here ia a very brief summary of potential treatment indicators, they are not normally isolated.

• Enlarging lymph nodes, liver or

spleen

• Falling haemoglobin or platelet

counts

• Constitutional symptoms such

as fevers, weight loss or night

sweats

• The lymphocyte count doubling

within a six-month period

leukaemiacare.org.uk/resour...

I hope this is of help

[LCNurse2 Moderator LeukaemiaCARE Nurse]

Hi Jillychoo, sorry to read you are feeling unwell. I would recommend that you go and see your GP, or haematologist/clinical nurse specialist about your symptoms and concerns. It will help to put your mind at rest and hopefully they will be able to help. When you have CLL it's important to investigate any new symptoms just to get them checked out.

[HAIRBEAR_UK Administrator]

Hi Jillychoo, I hope you are feeling a little better today and you have managed to talk to a medic. You asked about symptoms and night sweats. a good resource to find out more is from the CLL community here on HealthUnlocked. A search of night sweat brought up these discussions between CLL patients healthunlocked.com/search/n...