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Diagnosed with CLL in 2024 I am now worried as I can feel more lymph nodes in my neck

Motherteresa

I was diagnosed with CLL in  2024. But I also have fibromyalgia and osteoarthritis and psoriatic arthritis and back issues.  I’ve recently been unwell with a bad cough/cold had 3 lots of antibiotics to clear it then for the last 3 weeks I’ve been suffering with a really bad back    I’ve lost 3 stone being on Wegovy.   But I’m now worried as I can feel more lymph nodes in my neck   I’ve ask to see my consultant every 6 months instead of 12 months. No appointments have come through.  I’m also starting to suffer with my mental health again with all that’s been going on in recent weeks.   I’ve had a  lot of mouth ulcers on roof of my mouth they have not gone but I’ve got them under my tongue now. What should i do.  Contact my GP or see my CLL nurse.  I just don’t know what to do for the best 

  • Hello and thanks for your post,

    I am sorry to hear about your situation. You do sound like you have got a lot going on at the moment.

    I would in the first instance contact your haematology nurse and let them know about the ulcers in your mouth and your swollen lymph nodes. It is hard to be able to give an opinion as we are not involved in your case. Your haematology nurse may suggest that you have some blood tests. If you are unable to get hold of your haematology nurse then do make an appointment with your GP. Do let either team know how it is affecting your mental health.

    Try not to over think it for now. Swollen lymph nodes may be slightly raised because of your recent infection or they may also have become more visible because of your weight loss from taking the Wegovy injections.

    You may be interested in getting in touch with the CLL support charity. This charity is a patient led charity and you may find it very helpful to connect with other patients.

    You are very welcome to ring the nurses on the helpline. The nurses are here Monday to Friday 9 am to 5 pm and our number is Freephone 0808 800 4040.

    Take care

    Catherine

  • in reply to CRUK Nurse Catherine

    Thank you for the reply     I’ve spoken to my nurse today and got an appointment next month with my consultant. The mouth ulcers have cleared now as I’ve been using salt water to wash mouth out and bonjela         It’s all a bit much to deal with at the moment and rather stressful   I will speak with the team.  Thank you again for your kind reply 

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