Lymph nodes that are multiplying

[meggylng]

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

[Hidden]

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.

[Stelladoro in reply to Hidden]

Why are your ct scans dreaded?

[Hidden in reply to Stelladoro]

They are dreaded due to the radiation exposure. At the time I was getting a scan every 84 days. In addition, the hospital where I was originally diagnosed did a ct scan. I also had a ct scan as part of the qualifying process for getting into a phase 1 drug trial. Once in the drug trial I had a scan every 84 days. This was driven by the FDA. So in a two year period I had 10 ct scans. Now I am getting a scan once a year.

[Stelladoro in reply to Hidden]

Wow understood

[AussieNeil Partner Administrator]

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

[meggylng in reply to AussieNeil]

Awesome answer, Thank you

[meggylng in reply to meggylng]

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

[AussieNeil Partner Administrator in reply to meggylng]

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

[Cllcanada Top Poster CURE Hero in reply to AussieNeil]

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

[Joyefulone in reply to AussieNeil]

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.

[DebLeeCox in reply to AussieNeil]

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!

[AussieNeil Partner Administrator in reply to DebLeeCox]

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

[DebLeeCox in reply to AussieNeil]

Thank you Neil! So appreciate your advice.

[DebLeeCox in reply to AussieNeil]

I have made a submission, thank you!

[saturdayschild]

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.

[Psmithuk in reply to saturdayschild]

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.

[saturdayschild in reply to Psmithuk]

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.

[JKDLED in reply to saturdayschild]

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.

[lorna222 in reply to JKDLED]

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!

[keepfit123]

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.

[newyork8 in reply to keepfit123]

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

[RJR1]

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

[lorna222]

Hello again. An update on the sore throat...my primary Dr. gave me a round of antibiotics and steroids, which did nothing for the throat. I also get very hoarse and the throat is worse in the evening. I went to an Ear, Nose and Throat Dr. after having a CT done on the neck. He pulled up the images on his laptop and I told him I just wanted to make sure it wasn't cancer, as in a secondary cancer, he said it's all cancer!! Yea, thanks a lot! I say that since I really don't think about the CLL since I am W & W. So, he gave me a stronger antibiotic and I will see how that does, so far still have the sore throat and he added red tonsils, inflamed etc...I'll see my oncologist later this month for blood work. The hot flashes are miserable and I do agree that my body is having a time trying to regulate itself. I know it could be worse, but sweating and being cold, having chills....UG is all I can say. I try to stay positive and know I am at a greater risk with a compromised immune system, but have been very lucky - no colds or flu for at least 2 years. I do try to limit my exposure to large coughing and sneezing crowds though! Thank you for all of your posts:))