Bloods are OK although lymph nodes swollen

[ProvenceSunshine]

Can anyone explain to me or direct me to where I can find this information. My husband was in remission with CLL for 4 years, after having treatment. Although the past 6 months or so his lymph nodes have been swollen. The hematologist has said his blood results are OK and it appears to be watch and wait. No treatment at this stage and will revisit the hematologist in 4 months. We struggle to understand how my husband's bloods are OK if his lymph nodes are swollen. What is going on in his lymph nodes? I need the idiots guide to this please. Unfortunately we didn't get an answer we could understand from the hematologist. Thank you to anyone who can support.

[Newdawn Administrator]

This happened to me a few months ago having just slipped out of remission after 3 years. My bloods were all in range except for my slightly depleted platelets which were attributed to the pneumonia I was recovering from. All seemed well with the labs. However, a lymph node began to swell in my neck and scans indicated widespread lymphadenopathy and slight enlargement in my spleen (splenomegaly). My haematologist was somewhat baffled at this as I’d always previously had a CLL presentation with lymphocytosis (high lymphocyte count) He sent me for a battery of scans and biopsied the lymph node in my neck.

Thankfully it hasn’t transformed into anything aggressive but my presentation was now more SLL (small lymphocytic lymphoma). It had raced back rapidly and manifested in my nodes and tissues.

I’ve been on Zanubrutinib since which a subsequent scan has revealed has been very successful. My labs never did slip out of range. This can be the case for patients who have the SLL form of the condition but the treatments are the same. This could explain your husband’s situation but of course only his doctor can confirm this.

macmillan.org.uk/cancer-inf...

Best wishes,

Newdawn

[ProvenceSunshine in reply to Newdawn]

Thank you for sharing. Interesting they sent you for scans when your lymph node was swollen. My husband just had his normal 6 monthly blood test. No other tests apart from a physical examination, we're the hematologist said it's come back but get on with your life and we'll review in 4 months and gave us a safety data sheet on a drug to take indefinitely. I thought he would have done a biopsy. I think it's just reassurance we seek. Thank you again.

[BigfootT]

His disease is presenting as SLL. My highest ALC at diagnosis was 5.68. Since then it has gone down into the normal range along with all my other counts. My oncologist stated that if I went for a physical today the doctor would think I was fine unless he poked around on my lymph nodes. For some reason, and doctors don't seem to know why, some of us have CLL cells that like to hangout in the nodes while others have CLL that likes to hang out in the blood......thus CLL/SLL. At times it might change presentations. I think the bone marrow is another question mark, though as I understand things that's where it all starts so I believe the assumption is you'll always find it in the bone marrow.

Even though my counts are normal like your husband's they did a flow cytometry on both my blood and on a lymph node and found CLL in both samples. So I have it in my blood it just isn't high enough to take my counts out of the normal range.

Hope that helps, Bigfoot

[ProvenceSunshine in reply to BigfootT]

Thank you for your feedback. Everyone who's relied seems very informed about what's going on with their CLL. I feel we aren't properly informed by our hematologist or lacking the support. I think I need to find out more.

[neurodervish in reply to ProvenceSunshine]

I just realized you joined our group today. Welcome! When you wrote that your "husband was in remission with CLL for 4 years," I figured you were an old pro. This video is my favorite primer on CLL. It's 8 years old, so there are newer treatments available, but Dr. John Pagel does an amazing job explaining CLL: youtube.com/watch?v=L1PDNzZ...(Not working as expected?)

[neurodervish]

CLL is really complicated, but here's my attempt at a simple answer. Like dog breeds, there are many genetic variations of CLL (and plenty of us CLL mutts).

As I understand it, one of the main ways it presents is in the overproduction of lymphocytes (lymphocytosis). Those pesky extra lymphocytes can hang out in different parts of the body. They often show up floating around in our blood, which reads as higher than normal absolute lymph counts (ALC). The concern with the ALC number is less about how high it is, but more about how fast it gets there; that is, does it double in 2 months? As in your husband's case (and mine), they can show up in the lymph nodes, where it's not much of a problem until those nodes get larger than 10 centimeters (ie, ≥10 cm in longest diameter). It can be in the spleen (where if too many are in there it could get too big and crowd out the stomach, causing unexplained weight loss). It can be in the bone marrow (the biology of which is much more complicated).

CLL specialists will keep an eye all those things (including other markers in our blood labs) during the watch & wait period until they present enough symptoms to warrant treatment (tx).

When CLL patients reach that threshold, treatment is initiated. With CLL, we wash, rinse & repeat. In between those treatments, most of us get remissions, but not a cure.

I copied this When to treat CLL guide from from ASH 2018 web page ashpublications.org/blood/a...

Active disease should be clearly documented to initiate therapy. At least 1 of the following criteria should be met.

1. Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cutoff levels of Hb <10 g/dL or platelet counts <100 × 109/L are generally regarded as indication for treatment. However, in some patients, platelet counts <100 × 109/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.

2. Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly.

3. Massive nodes (ie, ≥10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.

4. Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months; patients with initial blood lymphocyte counts <30 × 109/L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded.

5. Autoimmune complications including anemia or thrombocytopenia poorly responsive to corticosteroids.

6. Symptomatic or functional extranodal involvement (eg, skin, kidney, lung, spine).

7. Disease-related symptoms as defined by any of the following:

a) Unintentional weight loss ≥10% within the previous 6 months.

b) Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).

c) Fevers ≥100.5°F or 38.0°C for 2 or more weeks without evidence of infection.

d) Night sweats for ≥1 month without evidence of infection.

I hope this helps a bit. I didn't include info about FISH testing (genetic testing that hones in on which chromosomes are involved in each person's version of CLL), which is a whole other can of worms.

[ProvenceSunshine in reply to neurodervish]

Thank you for taking the time to give me this informative information. Am I to understand that a blood test alone can not determine if treatment is needed, if the lymph nodes are swollen? Shouldn't a biopsy be required of the lymph nodes, to determine the speed rate and size, as you mentioned?

[neurodervish in reply to ProvenceSunshine]

First, let me say that all my swollen lymph nodes melted on the very first day I rcvd obuntuzumab. It was like someone let the air out of all the balloons. There is no need to cut them out in a situation like this. I think many people think of cancer as "solid tumors that need to be biopsied or cut out." But with blood cancer, it's literally swimming around every part of our body (except the corneas).

I mainly wanted you to know that the excess lymphocytes congregate in different parts of our bodies. The blood work, along with the symptoms listed above helps provide a roadmap for when to treat. For instance, the bloodwork will show if platelet, hemoglobin or neutrophil levels are too low. Those are red flags that can be easily read in blood labs w/o the need of surgical intervention. There's more to it, but the main thing is that the blood labs, combined with physical symptoms, tells a huge story about our disease progression.

Other than the lymph nodes, how does your husband feel? Is he experiencing fatigue, unexplained weight-loss, drenching night sweats, fevers?

You mentioned that your husband had treatment before. Can you share how soon that was after diagnosis? And do you recall what treatment he had and what symptoms triggered it?

[lankisterguy Volunteer]

Hi ProvenceSunshine,

Just like Newdawn & BigfootT , my CLL presented the first two times as blood based CLL with no surface lymph nodes appearing (only found by CT scan, deep in my abdomen late in the progression) but the 3rd time the surface nodes came first and the ALC rise followed the nodes. Fatigue and infections were also appearing at different times for each progression.

So as we often share- CLL does not follow rules and each of us can get any combination of B symptoms at any point in the disease progression.

Len

[ProvenceSunshine in reply to lankisterguy]

Thank you Len. I'm starting to understand this a little better with everyone's experiences.

[CoachVera55]

Hello there, this whole disease is baffling🤦🏽‍♀️

Blood Cancers’ ‘Wait & Watch’ Policy is our unique phenomen already… I hear the terms W&W in the beginning & then ‘Medication Break’ after treatment which essentially means the same. The disease is there but we just monitor it until another treatment is needed. I would recommend enjoying this time & forget about fully understanding it.

Shoot even some of the experts disagree so why should we live through it & try to understand the technical parts of it when we all differ in our presentation. I am 5 months off of Zanubrutinib which many have been on for years, with no side effects. That bad boy dragged me for 13 months & I am now just feeling better & dropping the 50lbs it added to my frame but mostly from the steroids needed to stop its toxicity to my lungs.

I’m off the respiratory inhaler with steroids, weaned off Protonix & only on Lasix just 2X per week now. My next treatment may be O&V but I am not fully on board with that. My plan is never again. I have not been sick in 1yr even though Platelets are 105 & Neutrophils 1.4, Hgb & WBC are in normal range. My energy levels are good & Cardiac Rehab of 3 months ends in 2 weeks. No chest pain or respiratory issues. My CLL Specialist doesn’t feel my lymph nodes but I do & I know they are just waiting🤷🏽‍♀️

BTW my CLL Specialist was so overwhelmed with my progress that she said I may be ‘off treatment’ for 3yrs. She said that there may be something to my Plantbased Nutrition & Exercise related to prolonging the need for treatment. I already know that with my initial 13yr 8mos Wait & Watch period (2009-2023)

ENJOY your medication free time🎉🎉🎉

[ProvenceSunshine in reply to CoachVera55]

Thank you CoachVera55

[Spark_Plug]

You asked for it, you've got it. CajunJeff wrote an idiots guide that many are pointed to when they arrive. I don't have the link but someone will guide you to it Jeff's a regular here and admin uses his writing, he is quite the wordsmith.

🙂

[CLLerinOz Administrator in reply to Spark_Plug]

Here’s the link to cajunjeff ’s ‘CLL for Dummies’ posts:

healthunlocked.com/cllsuppo...

For future reference, it’s one of our “Pinned Posts”. The list of pinned posts can be found to the right of an existing post on a computer screen or at the bottom of the screen on a phone.

CLLerinOz

[Spark_Plug]

Many thanks to CLLerinOz. 🙂

[Braveheart19]

I am really interested in this post. I was diagnosed with CLL around 14 years ago just based on blood tests. I’ve been on W&W ever since with no treatment. My blood tests have rarely changed and to me hardly prove CLL. However, I have lymph nodes in my neck that one of which can get to half an egg size. I have had a scan which indicated widespread lymphadenopathy and slight enlargement in my spleen (splenomegaly). I find it really frustrating. I just have an annual blood test. The consultant doesn’t want to see me unless things change. However the thing that frustrates me is to get travel insurance costs me a fortune as I’ve been “diagnosed” with CLL.