I’ve been on watch and wait with Chronic lymphocytic leukaemia (CLL)/ SSL for 3 month and my next consultancy is in late January .
I’ve noticed my lymph glands around my neck , jaw and armpits have been growing slowly but I also have a pain on the left hand side of my lower skull beside my ear which I’m assuming is lymph gland related also .
I’m just wondering whether anyone has also experienced this reaction as I know everyone’s experience with Chronic lymphocytic leukaemia (CLL)/Small lymphocytic lymphoma (SLL) can be different .
Also is there anything that can be done to slow or regress the inflammation of the lymph nodes ?
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Hi @chrism and welcome to the forum.
I have a different blood cancer but I hope others can share there experiences.
I would always say to let your medical team know if there are any changes or to ask any questions. Have you got a clinical nurse specialist you could contact?
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Nichola
Yes I do have a specialist nurse so I will contact her thank you .
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Hi @chrism I am so glad that you have found us, welcome.
If you feel your symptoms have changed perhaps contact your specialist nurse, if you have one, or your medical team or GP.
It would also be a medical person who is the one to answer your question at the end of your post.
Please do let us know how you get on and please do keep posting.
Be kind and look after yourself
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Hi @chrism
It sounds like we are in a similar position with our Chronic lymphocytic leukaemia (CLL) and lymph nodes
My next appointment is in February but my lymph node’s appear to be increasing in size at a steady rate . They were enlarged at my last appointment , am currently having appointments every 3-4 months rather than 6 due to their increase in size and my consultant advised that though they were nothing to be too concerned about at this point she would like to keep an eye on them I must stress though we are all different so your symptoms may be more pressing and need a more urgent response , your consultant will no doubt explain what they think at your next appointment
I would as @Erica has said have a conversation with your specialist nurses though if they are causing you concern.
I get some really sharp pains around my lymph nodes and like you have a sharp pain behind my right ear that whilst I can’t feel a lump or node it feels more swollen than my left
I am currently just taking paracetamol and resting a little more which seems to alleviate some of the pain and discomfort
I hope you are okay and get some answers, take care be kind to yourself and let us know how you get on
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Hi DottieB
I really appreciate this feedback it’s reassuring thank you .
Usually my lymph glands , although still increasing . Are not painful but this one behind my left ear is !
I guess there is not a lot of flesh there to cushion the sensitivity .
Anyway I will speak to my
Specialist nurse , thank you for the feedback and I hope all goes well for you .
Thank you
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Ahh that’s good that you’re not getting pain with them all
Let me know how you get on!
Take care
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Did you manage to speak to the specialist nurse?
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Nichola
I have a phone consultancy with my specialist consultant , Richard Kaczmarski early
Next week thanks for asking .
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That’s good news. Keep us updated on how you get on x
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Hi Dottie
I sympathize with the way you feel .
I have some bad days but I find that the issues do tend to resolve themselves and I realize some of it is in my head as much as anything although I do get aches and pains at times , I had one on the base of my skull / neck for a week or so but it eased off .
I have my next cat scan mid January and my meeting with consultant late January and it’s my first since being out on watch and wait so I believe that adds a little bit to one’s feeling of anxiety .
My
Lymph nodes are also growing especially on my neck and chin so I’m very self conscious but I find most people don’t really notice only those who know about my condition and I’ve decided to only tell close family for now .
I think it’s always worse when you are looking at yourself , my wife reassures me it’s fine !
I take a walk every day and I help fresh air considerably helps my mood and feeling of well being .
I find a painkiller like ibuprofen when I’m feeling sore here or there helps take the
Mind off things and often I only need one dose a day and feel better for the rest of the day .
I think getting through the next consultancy will help a lot .
I hope this helps Dottie all the best
Chris
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Thank you for your reply and kindness
You are so right and things do right themselves.
I know this but could not shake the feelings today
I really appreciate you responding , it’s good to know it’s not just me
Thank you
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