Enlarged Glands in Neck

[Porty14]

Hi there,

This is our first post.

I’m getting worried about my husband’s enlarged glands in his neck. They are quite noticeable. He was diagnosed 2 years ago and is on a Watch and Wait with regular blood tests. His platelets (96)and haemoglobin (119)levels dropped significantly last time and he is feeling increasingly tired.

My questions are:

Will this impact his breathing?

He said he is dribbling sometimes; day and night. Is this a symptom?

He is going to the doctor’s for a non urgent review! What questions should he ask?

We live in the UK and our NHS is going through a crisis! Should we push for consultation with a CLL specialist in Birmingham?

Can we do anything? He went to a nutritionist and is following a healthy diet?

Many thanks

[AussieNeil Administrator]

Hi Porty,

Unfortunately, having very enlarged glands (lymph nodes) in the neck can be a problem for some of us, particularly if we have the 11q deletion form of CLL (which would be shown on your husband's FISH test result, if he has ever had that done). 11q del is associated with bulky node presentation. There's probably some enlargement for most of us as our disease progresses, but at the worst, we can look like chipmunks with a mouth full of nuts. I don't know of the swelling causing breathing problems, though. Likewise, I've not heard of dribbling being a sign of worsening CLL. Diet is highly unlikely to make any difference to the swelling, nor probably anything else the nutritionist suggests, to be honest. The nodes do shrink quickly with modern treatments, however.

Given his platelets are now below 100 and both those and his haemoglobin counts are dropping significantly, yes, he needs to be seen fairly soon. UK members may be able to suggest what's a reasonable time for him to see a CLL specialist in Birmingham in the current circumstances.

Neil

[Porty14 in reply to AussieNeil]

Thank you Neil. Very helpful. We will ask about FISH scores when we go to the doctors on the 11th May. Also the 11q deletion from which I’ve never heard of… early days I suppose! We will mention the dribbling also. Knowledge is power hopefully!

[Porty14]

Thank you.😊 We are both rather new to all this so there is a lot of learning involved. It’s a fine line between gaining knowledge and getting anxious. Also there are long waits to be seen in the UK at the moment. 😞

[Mtk1]

Hi, do you have a haematologist who is looking after your husband? As regards fish scores, I think here in the UK we only get that test when starting treatment. I was watch and worry for 5 years before starting treatment and also suffered with swollen glands in my neck long before needing treatment, it seems the glands swell every time you have an infection ( cold, flu etc) . I never had any dribbling though, hope your husband gets sorted soon.

Dave.

[Pearlpink]

everyone in uk is entitled to a second opinion regarding their cancer treatment. Therefore, if your local haematologist is not a CLL specialist, and you have any problem getting them to refer you to a specialist centre, then ask your GP to send an urgent 2nd opinion request to the person you want to see at the specialist hospital. The whole process is very quick, and I was seen in a couple of weeks, and it was the best thing I’ve ever done.

Dropping platelets are a sign that your husband might need treatment sooner. The dribbling is not a routine symptom. It is either something interfering with salivary glands - as Neil said, or that something, like nodes, is interfering with normal swallowing. Fatigue, dribbling, dropping platelets. Your husband sounds very stoic! Weirdly, we all tend to minimise our symptoms as we get so used to them. However we are often more unwell than we think. Only takes one dr minimising them and we feel like we are moaning and keep quiet. I find writing them down is helpful as I can’t remember them when I’m in clinic.

On reflection if it were me, I would just ask Gp to refer for 2nd opinion and send all the details of symptoms and bloods.

My life changed massively at the 2nd hospital. Just felt cared for rather than feeling like I was being a nuisance.

The new consultant said that no cancer consultant should ever feel offended by a second opinion. He also said that if they were offended then they weren’t the person for you. It was very easy to get second opinion and you don’t have to worry about what the other dr thinks.

Good luck to both of you!