lymph nodes swelling

[Tchapman]

Hi, just curious if any of you have had lymph node seedling without it being CLL? I got sick a few weeks back and my nodes are swelling and I now have a few new ones. Having some headaches as well. I did see my oncologist and my blood number look okay everything in normal range except my white count is 53k no other issues.

[cajunjeff]

Hello Tchapman. Our lymph glands act as filters when we get an infection. It’s common for people with bacterial or viral infections to experience swelling in our glands where bacteria, dead cells and immune cells can collect. So it’s a safe bet that everyone on here has had swollen lymph nodes at some point in their life before getting cll, even if they haven’t noticed them. A cancer like cll is actually a more rare cause of lymph node swelling than a normal infection.

I am no expert. I think it is fair to say, though, that if you are having persistent or progressive swelling in your nodes, in the absence of some ongoing infection, that your cll is a likely culprit. It can be distressing to some when they pop up, it was for me for sure, because it’s a physical reminder of our cll.

Swollen nodes is definitely a symptom worth reporting to your doctor who can better tell you what is causing your nodes to swell, be it your cll or something else. The good news is that if you do reach a point where you need treatment, the new therapies can melt nodes away with great rapidity. Mine swollen neck nodes were barely noticeable after a couple months on ibrutinib. Good luck.

[MisfitK]

I would report to your doc, but I would also check to see if you really cleared your original illness. Since you are still mentioning headaches, you may not have actually yet recovered from your sickness. I know when I got Covid last summer, I thought I cleared the illness in a week, but then a week later, I got a follow on bacterial infection in my throat that swelled my nodes enormously and gave me a very painful sore throat that ended up with me in urgent care and getting a 10 day antibiotic (after which, I was finally "well" and my throat nodes shrunk down to normal).

[JigFettler Volunteer]

Lymph nodes are notoriously difficult to examine, more so one oneself!

As cajunjeff says, Lymphnodes have complex tasks and when working will swell. Different "tasks" will also make them feel different. Small shotty and hard, or large and soft. sometimes painful.

"Lymphnode seedling" your term, may suggest a small nodular node, that could be a different cause than the CLL which typically causes larger softer nodes.

Did your Oncologist examine you?

In any event, if doubt prevails do get yourself checked again!

Jog

[Tchapman in reply to JigFettler]

Thank you so much for your reply. My plan is to see the oncologist on the 15th. I’ve had CLL for 10 years with no major issues till this stickiness and swelling lymph nodes.

[CycleWonder]

Are you seeing a CLL Specialist? I looked at your bio and saw a White Blood Cell count of 53k, which for CLL is not particularly high. Normally treatment decisions are based on a number of factors, including:

Absolute lymphocyte count doubling within 6 months

Hemoglobin dropping below 10 or heading in that direction

Enlarged spleen (can be palpated below rib cage)

Swollen glands that interfere with swallowing

Unintended weight loss

Platelets (below 100)

Illnesses such as pneumonia, infections

Fatigue that interferes with daily living

Could you perhaps lock your post and then explain the issues you had with Ibrutinib? That might inform which treatment might be considered going forward. For example, if you had problems with joint pain or headaches but the drug was helping your CLL, you might be able to use one of the newer BTK inhibitors that have fewer side effects.

I wish all the best going forward