Swollen lymph nodes in the neck.: I have... - CLL Support

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Swollen lymph nodes in the neck.

Willowbug profile image
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I have throbbing swollen lymph nodes in my neck. It’s been causing a lot of discomfort in my neck and at night as I sleep. Has anyone else had this because everything I read says the lymph nodes are painless with CLL thanks so much.

yvette

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Willowbug
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6 Replies
Poodle2 profile image
Poodle2

They should be painless but sometimes they can press on nerves and that can be very painful. If nodes are causing pain, it can be a sign of an infection in your body. I would start with informing you CLL specialist if these are new sudden changes and also get in touch with your GP. They can easily find out if you have an infection (blood test), physical examination and if a course of antibiotics would help.

Jackpot profile image
Jackpot

A couple of years ago I was unknowingly bitten by a mosquito on my head. A short while later, the lymph nodes on the back of my neck and behind my ear were hard like marbles. It hurt to turn my head. I was told to apply ice and take Tylenol for the pain. It took a good week for the pain to subside. I hope you will be able to get some relief for your pain.

gardening-girl profile image
gardening-girl

Yvette, for several months prior to my CLL diagnosis I had painful lymph node 'lumps' around my head and neck. My PCP sent me to an oncologist to get them biopsied. The oncologist refused to biopsy them and told me that they were simply due to allergies. I continued to suffer until a rheumatologist finally ordered a blood test that revealed my CLL diagnosis.

Lojane profile image
Lojane

Everything we read about CLL says that the enlarged lymph nodes are painless. However my husband’s first symptom of CLL when he was first diagnosed 7 years ago was painful enlarged nodes in his neck. He is still on WW and takes painkillers to help with the discomfort.

The consultant said that the surrounding tissues get stretched causing the pain and pain in itself could be an indication for treatment.

As my husband has still got a relatively low lymphocyte count the consultant suggested that he could in fact have SLL where the lymphocytes collect in the lymph nodes rather that than the peripheral blood . In fact this makes very little difference as CLL and SLL are the same disease just expressed differently.

Sunsurfsand profile image
Sunsurfsand

I'm WW for 4 years now - mutated 13q with a relatively low lymphocyte count. I have slightly enlarged lymph nodes in the back of my neck (as well as other areas in my body). My Dr suggested my disease expression is more SLL (yes, the same as CLL with a different expression). The disease is progressing slowly so far.

I have noticed when a node is enlarging, or a new node is forming in the back of my neck that I can have pain/discomfort. I've applied Diclofenac gel to the skin & it has relieved the pain. (I'm in the US, so not sure what the gel is called in the UK. It can interact with other medications so best to check with Dr.) I have a prescription from my primary care Dr. My pharmacist said it was ok for me to use with Ibuprofen.

Hope this is helpful.

DoriZett profile image
DoriZett

I originally presented with SLL which is more lymph node related than in the blood (CLL). My lymph nodes were always tender and even down right painful in watch & wait, and for a while into treatment until they got much smaller. I am back in W&W now (stopped Acalabrutinib 10/30/2021) and they are painful again. Pain is not in itself a reason to treat (per my onc) but I feel that in my case, when the nodes are on the "upswing" I feel them. I have also been diagnosed with Fibromyalgia - so that may be the reason as well. Best to you on your CLL/SLL journey.

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