Lymph node swelling

Hi Everyone! This is my first post, although I have been reading the posts from here for months. I was diagnosed with CLL in 2008, although I have had a high

WBC since 2006. My markers are all good with no mutations, except for IVGH. I'm ZAP 70 negative as well as CD38 negative. Not anemic and platelets in the normal range. WBC is in the low 80's and segs are in the normal range.

My question is this...I've noticed my lympn nodes have started to enlarge in my cervical area and neck. I was wondering if lympn nodes will continue to pop up and also do they wax and wane? I noticed that the ones under my arm increased after I received the prevnar13 shot. Thanks for the help and support!

10 Replies

  • Hi albie58

    I always get pleased when someone who has been reading decides to write, I think many of us have done that . Like you we need to throw a question out there, and I am glad you have.

    Question if I may, when is your next haematologists appointment ? If it is some time away do ring your specialist nurse if you know who that is, or go to your GP so they can see what is going on. Hopefully nothing important but we all worry if we are unsure, it goes with the CLL territory. Best to have your mind set at rest. Stress is not good at all.

    Do let us know how you get on, meanwhile huge hug and best wishes


  • Hi Bubnjay 1!

    Next hemo appointment is in a week and I will have lots of questions. You are right about stress...never a good thing and information is peace of mind!

    Thanks for welcoming me in! It makes me feel so much better with the support I have gotten from you and others!

    Take care!


  • My neck lymph nodes (and armpit and groin) are all typically around 2 cm. I think normal nodes are around .5 cm. If I am fighting anything like a URI or ear infection they can swell up to 4 cm. My hematologist always said that proportionally mine swell like anybody else's but since they are big to begin with it makes it much more noticeable. I am still on W and W.

    Hopefully that is what is going on with you. Its always good to let your doctor tell you its not disease progression though. Peace of mind is a wonderful thing.

  • Good Morning Eperl!

    Thank you for your experience! Even though I've had CLL for quite a while, I never really think about our bodies' natural abilities to continuing fight off infections. And nodes that normally swell a little and we don't notice, are different with CLL.

    I'm due for a flu shot too, so I can't wait to see what that will do to them! My next hemo apt is in a week so I'll have lots of questions for him.

    Thanks for all your help! It's much appreciated!


  • Hi, I was stung on the head by a wasp three weeks ago and had the flu jab two days later. What remains today are very prominent lines of swollen lymph nodes on my neck. I was beginning to think they'd never go but, bit by bit, they''re just starting to reduce. I too had swollen nodes under arm when I was given a cocktail of meningitis and pneumonia vaccinations. They took two months to go down.

    Generally it takes some sort of event to cause instant swelling and weeks for them to go down.


  • Hi Mike!

    I was stung twice about three weeks ago myself and never really thought about how that might effect me. But it makes sense. And the Prevnar shot was only about 2 months ago as well.

    Thanks for the info. It makes me feel much better!


  • albie58 wrote: I've noticed my lymph nodes have started to enlarge in my cervical area and neck. I was wondering if lymph nodes will continue to pop up and also do they wax and wane?

    Hi albie,

    The simple answer is YES!

    The long answer: I was also diagnosed in 2008 and I've progressed to needing treatment 3 times, had no detectable nodes the first time.

    I had large internal nodes and spleen the 2nd time - nothing palpable but nodes in my abdomen that were 9 cm x 3 cm - only detectable by CT Scan.

    And my 3rd time- earlier this year I had 6 visible nodes on my neck that would go from 1 cm to 2 cm and back down over one or 2 weeks.


  • Thanks Len!

    I appreciate that you replied and it gives me an idea what someone else has gone through. They never really gave me any issues till I received that Prevnar 13 vaccination and now they are up and down!

    I hope you are doing well and feeling good! What type of treatment are you cuirrently receiving?


  • I started Venetoclax mid June 2016 and for me it is wonderful. No symptoms, nodes normal in 3 weeks, bloods normal in 6 weeks.

    I was on Ibrutinib for most of 2015 but had a painful rash after 6 months and tried various schemes to reduce the rash for the remainder of the year. My ALC never went down.

    I was on Idelalisib from Dec 2012 to March 2015 and had very good results but at 30 months my ALC began to rise.

  • Len,

    I'm so glad to hear that Dr Furman is taking such good care of you. 🍻


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