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?)

[ChillichilliBangBang in reply to neurodervish]

Thanks for the link, Neuro. Very informative video.

[ProvenceSunshine in reply to neurodervish]

Thank you for this video, very useful. Definitely not an old pro. Relief after my husband's chemo 4 years ago that all was well. I guess head in sand. But now his lymph nodes are swollen and not feeling very comfortable about the Hematologists not doing any tests apart from a blood test, and this watch and wait, I feel we need to know more about it. Trying to understand how he can monitor it without tests, to see how it's progressing. Thank you again.

[AnneHill in reply to ProvenceSunshine]

Cll causes us worry and doctors cant seem to put our minds at rest. It takes a while to develop and I was treated in 2010. After 5 years it started to come back but it was 3 years before I needed treatment. They wont treat before they have to.Many of us are diagnosed early and are monitored. Iv had cll for 23 years and been treated twice. Over the years of reading posts on this site, many folk have had large lymphnodes but not been treated.

After all these years I can understand why we need to enjoy our lives and try to stop worrying. That is the way with cll. The times when we calm down are followed with more worry. There are new drugs but it is nice to have a break before more treatment. I cant explain lymph glands properly but someone else will be able to.

The haematologist decided to take me off Ibrutinib. I was in remission for over 4 years but had muscle and joint pain. She was concerned that my platelets were getting lower. I think it was a mistake because in 3 months I have had 4 urine infections, other stomach problems and the fatigue I had before is a lot worse.

My platelets have halved and I am worrying again. If your husband feels well let the haematologist do the worrying ( they wont).

I am seeing the haematologist in 4 weeks time. Im hoping for some scans because in 2010 I had enlarged internal lymph nodes and spleen. My numbers were rising. If there is nothing showing a scan is a waste of time.

Im in remission and they will have to sort out the platelets.

We cant spend the rest of our lives worrying. I will take my own advice. It is a waste of time, Anne uk

[ProvenceSunshine in reply to AnneHill]

Thank you AnneHill for sharing. The more we are understanding this from others the better we feel. I hope all goes well for you.

[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?

[ProvenceSunshine in reply to neurodervish]

I've been reading the dummies guides to get more understanding of CLL and all the terminology so I can understand the posts and understand the cancer better. I feel so much more informed, it was vey helpful as is your post, thank you. This is the first time we've looked for support and it's been extremely valuable. Now I know the more informed questions to ask the hematologist next time. My husband gets fatigued although his blood doesn't show anemia and the hematologist is a little dismissive of it, and jokes he is 71, we get tired as we get older. We know it's more than that. He's always been young and fit for his age. Some days he just feels strange. He's had night sweats for a long time now, about 6 months before diagnosis, that hasn't gotten any worse. No fever or loss of weight.

His short temper is more frequent too, as it was before diagnosis.

When first diagnosed he had monthly chemo infusions for 6 months. His lymph nodes went down very quick and his blood responded very well to the treatment. I do wonder though the effects of chemo in the long run. I can't work out if it's age or the treatment but he does seemed to have aged mentally.

He had treatment about 4 to 5 months after diagnosis, because of COVID.

They found the CLL by chance as he was having reflux problems, so they did an Endoscopy and that's how they found the swelling. Although he had a lump under his arm but hadn't said anything.

He was having night sweats and being treated for anemia, before the diagnosis.

Thank you again.

[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

[ProvenceSunshine in reply to CLLerinOz]

Super, thank you.

[ProvenceSunshine in reply to Spark_Plug]

These guides for dummies are really good. Thank you.

[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.

[LeoPa]

Okay is a broad term. What he probably meant not bad enough for treatment yet. That is not mutually exclusive with swollen lymph nodes.

[SeymourB]

ProvenceSunshine -

You may find this thread enlightening:

healthunlocked.com/cllsuppo...

It attempts to shed light on how B-cells (and other cells) are attracted to lymph nodes, and how treatment then affects that. Unfortunately, there are no standard tests that examine the biological pathways that determine where CLL cells like to be.

AussieNeil provides a link to a study showing that cannabinoids may relocate CLL cells to lymph nodes, demonstrating that there's more to understand about chemokines and CLL. I should add that CLL adapts to therapy, and resistance to BTKi's can take multiple forms that may not be obvious in CLL that's predominantly in lymph nodes.

Blood is simply a convenient place to count cells. Monitoring counts in lymph nodes requires repeated biopsies that most of us are glad we need not suffer. The spleen is even harder, as it has multiple zones to check. So the strategy in trials with CLL predominantly in nodes is to use imaging, such as CT and ultrasounds to check the size of nodes and spleen periodically to determine signs of impending relapse. Outside of trials, monitoring RBCs and platelets for signs of possible marrow crowding would certainly signal relapse. Current iwCLL guidelines require symptomatic disease (B symptoms, loss of weight while not actively dieting, repeated fevers without sign of infection, etc.) to determine the need for re-treatment due to relapse.

The iwCLL guidelines are 6 years old, and addressed CLL in the age of cytotoxic chemotherapy, where treatment is more risky, so delaying was a good strategy. The benefits of earlier re-treatment have not been demonstrated to everyone's satisfaction yet, but I suspect that most doctors now re-treat with targeted therapy sooner than they did 5 or 10 years ago.

I think if I was in your situation (and I may be someday), I would ask for an ultrasound of the spleen and a few choice nodes to document their size, to be repeated at some interval, like a year or so. Report how you feel - exhaustion, in particular - because some patients sense the relapse coming before labs do.

=seymour=

reference:

ashpublications.org/blood/a...

iwCLL guidelines for diagnosis, indications for treatment, response assessment, and supportive management of CLL

Blood. Volume 131, Issue 25, June 21 2018

[ProvenceSunshine in reply to SeymourB]

Thank you for the information and advise.

[Coldplaybest in reply to SeymourB]

Hi. I have read through this string of comments and can't understand most of it. I have most of these symptoms and am about to start treatment. However there is little mention of weight loss. I have lost 7 pounds in the past month and 21 pounds in the past 18 months. I am eating huge amounts. Should I be worried about weight loss?

[Newdawn Administrator in reply to Coldplaybest]

I also lost a considerable amount of weight when my CLL needed treatment again. One of the formal guidelines for requiring treatment indicates;

‘Unintentional weight loss ≥10% within the previous 6 months’.

Make your specialist aware of this because it is significant especially if you can’t afford to lose the weight.

I’m sure your weight will start to stabilise when you start treatment and it becomes effective.

Best wishes,

Newdawn

[Coldplaybest in reply to Newdawn]

Thankyou. That's very useful to know. I have made my specialist aware of the today and she is seeing me next week. I am concerned about this, because, as you point out I don't have much weight to lose.

[Skyshark in reply to Coldplaybest]

Guideline for treatment.

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