Painful swollen lymph nodes in neck

[Wizzard1663]

I’m recently diagnosed during my last six month visit in early April. I’m 17 days into a 24 day out of the country trip, and got sick with head cold on first day. Can’t totally beat it and wearing down very badly. Abdomen swollen and painful Lymph nodes popped out on both sides of neck, with ones on left side painful. The April visit saw white count go from 16000 to 24000, with lymphocytes now around 16000. No treatment recommended back in April. Should I be alarmed, or is this just par for the course?

[AussieNeil Administrator]

Your swollen neck lymph nodes are most likely in response to your cold - it's where B-cells are going through the hypermutation process to select those that make antibodies that can lock onto the new cold virus coating and flag the virus for destruction by your immune system. The swelling is from when the selected B-cells multiply to produce antibodies to fight your cold.

Is your stomach pain localised?

Follow the standard advice for dealing with a cold, drink plenty of fluids, etc and seek medical assistance if your symptoms dramatically worsen, or your temperature climbs over 101F/38.3C, particularly if you are neutropenic.

Note that I'm not medically trained.

Neil

[cajunjeff]

Wizzard, sorry you are having those problems. With the limited information you gave about your Cll and the broad spectrum of concern the word “alarmed” can mean, it’s hard for anyone on here to answer your question.

If by alarmed do you mean there is some drastic change in your Cll that would require you stop your trip and return home, the answer in general would be probably not. Unlike other cancers where treating early can be critical to your outcome, there rarely is some immediate need to treat Cll.

Nodes can come and go and wax and wane. Some deal with pesky nodes for years before deciding to treat. If you have a virus or bacterial infection, that could cause your nodes to flare as well.

That said, whenever we have changes in our Cll presentation that concern us, it’s usually a good idea to report them to our doctor. My doctor’s assistant has been very kind in accepting emails from me when I have any health issues pop up, and I am careful not to abuse that privilege. If you are really concerned, maybe try calling your doctor’s office and tell them you are out of the country and see what advice they give. My guess the advice would be to finish your trip and see them upon your return, but I am no doctor and can’t give medical advice.

[Wizzard1663 in reply to cajunjeff]

Thank you Jeff, it really helps to get input from others with more experience in what we are fighting. I was wondering if I had a short term explosion in the condition and if I was therefore in imminent danger. Now I am hearing that just doesn’t happen

[cajunjeff in reply to Wizzard1663]

It rarely happens Wizzard. There is a small risk our Cll can transform into a more aggressive cancer for which more immediate attention is needed. The symptoms you describe sound typical for ordinary everyday Cll.

There is a lot of great information on here and I too find the site and members most helpful. It is always good to keep in mind most of the posters on here are not doctors and any advice or opinion is not a substitute for calling your doc. It’s good to get feedback on here but also a good practice to report any symptom that concerns you to your doctor.

I just got back from Norway. I continue to travel to keep Cll from running my life. I worry that some complication will come up while I am traveling. It helps to know that in most cases our Cll doesn’t require emergency attention.

Warm compresses help with the nodes. I have had a couple painful ones, but it usually subsides and the bigger pain is dealing with the mental aspect of having a physical reminder we have Cll.

I am on ibrutinib now and all my nodes melted away, in the first few weeks. Enjoy your trip. Jeff

[t2aa]

Hi wizard, lymph nodes often pop out when you aren’t feeling well or are fighting infection. Quite often they do hurt. They may go down once you have recovered from the cold.

If they stay enlarged after the head cold goes away, they are possibly associated with your CLL. Lymph nodes from CLL go up and down and sometimes they hurt and sometimes they don’t.

I currently have several extremely painful lymph nodes in my neck area. Going on 5 monthes now. Quite uncomfortable! Plus I have several more that we’re discovered on a CT Scan. This is one reason why the doctors have decided to start treatment next month even though my wbc numbers are not that high. I’ll be happy when these painful neck go away and it seems only treatment will make that happen.

Definitely talk to your CLL specialist about it if they linger. My regular hemo doc didn’t seem to think it was a big deal and did no further checking. It was the specialist that ordered the scan and discovered the extent of the problem.

[Hoffy]

Nodes hurt at first then pain goes away.

CLLsociety.org site can be very helpful.

Be well ,

Hoffy