Lymph nodes that are multiplying

Hi i am trying to understand my lymph nodes and how they are connected to my CLL. I am in good shape, blood work good, not tired to much. I wouldn't even know i had CLL if it weren't for all the swollen nodes on my scalp, that is how i was diagnosed. Anyway i have lots of them on scalp only. My question is do the more nodes i get, does that mean my CLL is getting worse? They are not painful if left alone, but if they get poked or something they do hurt and itch sometimes. If my nodes start shrinking does that mean my CLL is going away? I am not on any treatment on W & W. I am doing a lot of holistic things. Thank you

19 Replies

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  • When I was diagnosed with CLL my WBCs were high and rising. Then they started to decrease moving back to a normal range. I thought that I was on the mend. I couldn't have been more wrong or ignorant. My WBCs were just moving into my lymph nodes. My lymph nodes went crazy. On my neck, they were the size of tennis balls. My CLL had turned into SLL. In my case, it meant the end of W&W as I had gone from stage 0 to 3 and needed treatment. The initial fear was that the lymph nodes could be pressing against vital organs. It was the start of dreaded CT scans.

    I apologize for not being positive. However, there are a lot of great new treatments.

  • You need to appreciate that CLL cells flood our entire body - only our corneas (no blood supply) lack CLL cells. Our full tumour burden is the total mass of CLL cells in our blood supply, hundreds of nodes, our spleen, our bone marrow and perhaps other organs. Where our CLL cells congregate depends on our particular CLL genetics, modified by clonal evolution from further DNA damage occurring as CLL cells slowly multiply, perhaps enhanced by treatment. CLL is after all a chronic illness. CLL cells move in and out of our nodes and other locations where they sequester based on CLL cell signalling. Newer non-chemo drugs like Ibrutinib disrupt this signalling so that CLL cells leaving our nodes can't return, so our nodes shrink as the CLL cells die when they can't protect themselves by controlling the microenvironment around them in our nodes.

    Our nodes also swell and shrink of their own accord. Nodes on our scalp may be unsightly, but are preferable there to elsewhere, where they may interfere with vital bodily functions.

    One of the indications for starting treatment is nodes larger than 10cm in size - or perhaps pressing on a vital organ or nerve. It may take you many, many years before you need treatment, because CLL cells do die - it's the relative rate between growth and death that determines the change in tumour burden.

    Neil

  • Awesome answer, Thank you :)

  • One more question AussieNeil,,,,,are swollen nodes considered "Tumors"?

  • Yes, according to Wikipedia: en.wikipedia.org/wiki/Lymphoma

    'Lymphoma is a group of blood cell tumors that develop from lymphocytes (a type of white blood cell). The name often refers to just the cancerous ones rather than all such tumors. Signs and symptoms may include enlarged lymph nodes, fever, drenching sweats, unintended weight loss, itching, and constantly feeling tired. The enlarged lymph nodes are usually painless.'

    CLL/SLL is a leukaemia/lymphoma; strictly it's one of the many Non-Hodgkin Lymphomas. Note that swollen lymph nodes will vary in what proportion of the B-cells/lymphocytes are clones/CLL cells and in some cases, swelling may be the normal response to an infection. In that case the swelling should resolve gradually after the infection is over.

    Neil

  • Great answers Neil...

    Its actually the malignant white blood cells which are the tumours... the nodes are not cancerous in themselves, rather simply containers and proliferation centers for the B cells throughout the body.

    CLL and other blood cancers are 'liquid' cancers, they don't metasticise like solid tumours to spred, because they are in fact everywhere.

    You will sometimes hear the term 'tumour load' used in blood cancers, that in CLL refers to the absolute lymphocyte count [ALC] ... as most know, but it can also refer to lymph node involvement, as in 11q, which tends to be 'bulky' with lots of node involvement, more so than other genetic types...

    ~chris

  • Thanks. I have never read a better explanation of this. Thanks. This was the first symptom that lessened when I started the Imbruvica. The nodes in my neck lessened in the first week.

  • Hi Neil, may I ask Is FCR recommended for 11q CLL or is Imbruvica or Ibrutinib (the more targeted therapies as I understand) the preferred treatments for 11q CLL? And if so are Imbruvica and Ibrutinib available as first line therapies in Australia yet? And even more importantly are they provided for on the PBS or are they private? Sorry hope all these questions make sense!

  • Imbruvica is another name for Ibrutinib and is generally not available as a PBS subsidised first line therapy for CLL in Australia, though negotiations are continuing, which could influence availability for those with 11q deletion.

    You can influence the decision by providing a supporting submission before 4th October as I cover here: healthunlocked.com/cllsuppo...

    See table 2 in this document for the current status: pbs.gov.au/industry/listing...

    Unfortunately in Australia, I understand that private health insurance will not pay for treatment for CLL with the newer drugs not yet on the PBS unless they are dispensed in hospital (and newer drugs like Ibrutinib are taken at home). :(

    If you see Dr Con Tam, he'll make sure you get the appropriate treatment, which includes non-chemo trial access to Venetoclax and Ibrutinib.

    Neil

  • Thank you Neil! So appreciate your advice.

  • I have made a submission, thank you!

  • The nodes in my neck consistently cause me

    to have what feels like ear infections and

    constant sore throat. I'm always feeling

    " UGH" . like I have the flue every day. I am

    on W&W.. I've read Cll is different for each

    individual, and I was told by one doctor that

    blood work does not always give an accurate

    account of what is going on with the WBC

    count, as they do hide out in nodes.

    I was diagnosed after years of going to the

    doctor and complaining about earaches, sore

    throat and general malaise..

    I know you apologized for " sounding negative". I didn't hear it that way at all.

    I appreciate honesty, and have come to

    really dislike being patronized. The way I

    see it we are all sharing our own journey.

    I find it validating and very helpful when I

    read someone going through a similar

    situation. No one has all the answers but

    by sharing our own experience it in my

    opinion takes away the feeling of " am I

    crazy?". We are fellow sojourner learning as

    we go.~ thank you for sharing.

  • Just wondered if you actually have a low grade infection. The reason I ask is that when I was in hospital last year I was given an antibiotic for a chest problem, and was amazed to find that after a couple of days I could breathe through my nose ( it ran like a tap!), my throat swelling went down and my hearing improved. So I assume there was an infection there that the antibiotics cleared up. Unfortunately it is all returning to 'normal' now, so the effects didn't last, but I found it interesting.

  • Thank you Chris. I appreciate your

    reply. I agree. Prior to diagnosis I

    was given antibiotics multiple times. I did feel better. I have no

    regular doctor or support available.

    I'm sorry if I am annoying the group

    because I am not going by the rules.

    I just don't feel well at all. I need to

    try to get showered ( very short of

    breath when I do. I will try to. get to

    urgent care and hopefully get an

    antibiotic. Sending light and love

    to you and the community.

  • saturdayschild

    I feel much the same way. I am always tired with a sore throat and swollen nodes on my neck. It feels like everyone thinks I am a hypochondriac. However, mostly no one knows what to say or how to help. I am watch and wait with 17p/Tp53 deletion At times I feel like a ticking time bomb just waiting for something else to occur. It is helpful to know that we are not alone or "crazy". Your symptoms are real. I find heat on my neck is helpful. Hot showers or a heating pad are good.

  • Thank you for your post. I've had a soar throat only on the left side for about 3 weeks. One of the nodes on the left side of my neck sort of buldges out when I lay down or am propped up reading. The fatigue is ridiculous but I just keep going for the most part. Sometimes it pays to be stubborn. Other times though I allow myself to just rest and not feel bad about it - I just go with it and chill. My last blood work was stable....I am not schedule to see my Dr. till November...I'll see if the throat thing just stays....It's just another reminder of the CLL but I know it could be much worse. Glad to know it's not just me or in my head!

  • I can feel a small lymph node on both sides of my lower neck. I felt these even after I had finished six rounds of FCR and they are still there after being in complete remission for close on four years. What am i to read into this? I take it that you can't feel "normal" lymph nodes.

  • I have read residual lymph nodes can remain but they may just be scar tissue and not actice CLL.

  • The only reason I learned I had CLL was because my lymph nodes increased in size... but that wasn't the giveaway. I just thought my face was getting "fat" until one node at the back of my neck became tender. An old (85) year old GP in Arizona took one look and said " you've got lymphoma"... later tests proved CLL. By the time I started in Imbruvica almost a year ago the visible ones were the size of golf balls. Within a week or two of treatment... near back to normal size

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