CLL enlarged lymph glands: Hello! I am 39 and... - CLL Support

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CLL enlarged lymph glands

DebLeeCox profile image

Hello! I am 39 and was diagnosed with CLL in January 2017. I am on watch and wait and have regular blood tests every 3 months at this stage and under the care of a haematologist. My only symptom is enlarged lymph glands basically everywhere, started in neck then groin and now armpits. I have no other symptoms. Has anyone else gone through a similar experience or have any words of advice for me?

36 Replies
AussieNeil profile image
AussieNeilAdministrator

For some of us, our CLL cells preferentially bulk up our lymph nodes, rather than build up in our blood. (If you've had FISH testing, you may find you have the 11Q deletion, which is associated with bulky lymph node presentation.) Hopefully they aren't causing you too much discomfort?

If you become self conscious, look into changing your wardrobe to disguise your lymph glands - I hope you like scarves! (At least this time of the year most people would just think you were feeling the cold - particularly right now!)

Good to hear you are under the care of a haematologist and are having regular check-ups. Make sure they know if you are having any physical difficulties that you think may be caused by your swollen glands, as this may eventually be the trigger for you needing treatment, in which case you'll find they will quickly melt away.

Neil

Loulou46 profile image
Loulou46 in reply to AussieNeil

I never understood the watch and wait strategy. Why not fight it when it's easier to beat, now that it's been discovered that we can get complete remissions using FCR and other new therapies?

I had bulky lymph nodes and a growing WBC when I first got diagnosed and started FCR within a month. That was in 2007 and in 2008 I was in complete remission. I was 39 when I was diagnosed now I'm 49 and haven't had any set backs except for this stupid persistent rash on both my shins.

I wish you a complete remission and a long and happy life!

Cindy

AussieNeil profile image
AussieNeilAdministrator in reply to Loulou46

Unfortunately, all CLL treatment protocols have risks associated with them which are deferred by delaying treatment until necessary. (Reduced immunity, side effects, sometimes permanent and so on.) Given we are still trying to find treatments that extend our life expectancy, (though if you have the right genetics, FCR can give very long remissions which are becoming indistinguishable from a cure), CLL specialists are still of the opinion that watch and wait is the best option.

Neil

DebLeeCox profile image
DebLeeCox in reply to AussieNeil

Thank you for your reply Neil.

Hello and welcome "Deb"?

Bulky Lymph nodes are causing me some concern and a little discomfort. More psychological than physical; in truth.

I was diagnosed in Jan 2015 (including 11q deletion) and started treatment immediately. I had bulky lymph nodes in several parts of my body (usual places including behind the little button at the end of my sternum - just above my beer-belly)

I had FCR - 6 cycles and the lymph nodes pretty much disappeared by the end of the 2nd cycle - - the subsequent CT scan (Oct 2015) reported only "shotty" lymph nodes. All was well in that department until about March this year when they began to reappear. Together with some increase in lymphocyte counts (not high yet)

I've had my recent 3 monthly check and the Haematologist requested another CT scan (completed) and dependant upon the results of that and the latest blood test at my next (brought forward to 6 weeks) appointment (later this week) - has suggested possible bone marrow biopsy as the wretched disease may be making an unwelcome return.

Our situations a pretty different but my advice is - to keep close to this (great) forum, - to express your concerns to your Haematologist, - to keep active and enjoy life - you're a "young one" and be confident that you're in good hands and being monitored. I followed a Youtube video in Lymphatic massage - I cannot validate it's efficacy and don't wish to promote any alternative therapies. I followed it during the first months of my chemo-period - but then eased back when good results blossomed (probably the chemo). I have kept up the massage on my head, face and neck area because it seems to help to keep my sinuses free.

youtube.com/watch?v=XPlEa33...

Apologies - I've rambled on a bit about myself rather.

Best wishes,

Roger

Thank you so much for your reply ! Really appreciate it! Thank you for the advice! I wish you all the best with your upcoming results

Rgds Debs

Hi there.. Yes your story reflects many . Mine was similar I thought I had glandular fever!

I was working up until chemo and did feel a little concerned that treatment was a little too soon .. but remember how important your blood picture is .. my hb had dropped significantly to 8 so I started fcr.

Praying your bloods are good .. everyone presents differently . Huge lymph nodes can restrict movement and csuse discomfort . Kerr a watchful eye without letting it dominate you.

Take care. X Beth x

DebLeeCox profile image
DebLeeCox in reply to Bethan49

Thank you for your reply! My bloods are very stable at present as well as spleen/liver function tests. Hb also normal. Just have the glands swollen pretty much everywhere! Hope all goes well for you too!

Same issue happened with me when diagnosed 3 years ago. First year, visit every 3 months with blood work and bone morrow test. 2nd. year, lymph glands started to enlarge, everywhere. Spleen showed up as enlarged also, which showed up in a CT scan. Second year,my white cell count went from 35k to 120k , in 3 months. Started me out with Rituxan infusions (4 infusions over a 4 week period). That held for 12 months, then counts started climbing again. 2 more "sets" over the next year, then it was obvious wasn't going to work anymore. Started this Jan. on Imbruvia. Apparently this medicine is a "target medicine" and it goes after the lymph nodes first. After 3 months, all shrunk back to normal size and I only peaked at 196k in white cells. Starting to drop now, thankfully. Lots of side affects, but they (thankfully) are usually short term. GOOD LUCK AND HANG IN THERE. This sight is wonderful. Lots of people out there going through the same thing so share your thoughts and concerns on here. So, very, very helpful and eases your mind.

Can you please tell me about your side effects? I was diagnosed 10 yrs ago stage 4 with spleen and lymphatic involvement wbc has stay between 20k and 60k now elevated to 106k with large lymph nodes. Larger than ever and bothersome. Thinking time to pull trigger. Hematologist sold on Imbruvica would love to hear back from you and current status thanks in advance!

lankisterguy profile image
lankisterguyVolunteer in reply to haposwald

Hi haposwald,

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Welcome to our group, we see that you joined us today.

If your question is about enlarged lymph nodes, you can see several previous discussions by looking for a box on this page labeled "Related Posts" - it is in the upper right column on computer screens and way below on mobile devices.

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Related Posts

CLL/Enlarged Lymph Nodes

Enlarged lymph nodes in the neck

IBRUTINIB- enlarged lymph nodes in neck

Enlarged lymph nodes in my abdomen

CLL and Breast Lymph nodes

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Relapsing on Ibrutinib

Ibrutinib and surgeries

Ibrutinib+antibiotics

Ibrutinib and Hematomas

Ibrutinib in September

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Len

Hello. My husband is in the same situation. He is 42, diagnosed a year ago. His ALC is up to 10 right now, but has been 6 for most of the year and he has swollen lymph nodes everywhere but has no other symptoms and is very active and feels great. Did you have a fish test? Husband is 13q- and mutated so we have many great options for treatment when other symptoms start or if the lymph nodes start to pose problems.

DebLeeCox profile image
DebLeeCox in reply to Mldeterm

Thank you for your reply. My bloods are pretty stable too at 10 last check too. I did have a FSH test but cannot recall exactly what the results were. I just know Ai didn't have the aggressive type if that makes sense my haematologist did say that I had the gene that showed the CLL was little likely to progress. All very overwhelming. Will have to ask him more regarding the FSH test. All of the glands that swell up really worry me. But so relieved to hear that this is quite common. Finding this site has been a God send!!

Mldeterm profile image
Mldeterm in reply to DebLeeCox

I agree! I think the hardest part of being SLL presentation is that it is not as quantifiable. It's also a constant reminder starring at neck nodes.

kupers profile image
kupers in reply to Mldeterm

Hi. I was diagnosed a month ago from high WBC count from a physical. No symptoms at the time. I'm 46. Now 6 weeks later going for a CT scan to check lymph nodes. I think they are starting to swell. Seems like my situation is similar to your husbands. I really don't have other symptoms. Seems weird that I get diagnosed and then notice lymph node swelling the next month because I thought this was a slow moving disease. I am also 13q-. Is he staying with the lymph nodes being the only symptom for a long time with no other symptoms? I'm stressed at how fast this could move. I guess I've probably had this for quite a while before being diagnosed. Thanks.

Mldeterm profile image
Mldeterm in reply to kupers

We're pretty sure husband had it for at least 2 yrs prior to his diagnosis in Aug of 2016. Still just a lumpy mess but feels great thankfully. We moved from 3 to 6 month apts and still on W&W. Based on his node sizes I don't think we'll be in the 20 yr W&W group, but his body seems to be managing its tumor burden well. Good luck! I'd caution you to not freak out based on CT findings. Husbands was quite the report but as long as they aren't impacting any major organs or your airway they are pretty harmless and are just part of the total CLL puzzle. Some people are more concentrated in blood or marrow, others like us are in the nodes. Hang in there! It gets so much better once you have had some time to come to terms with everything and have all the unknown test results in front of you. Also - we've not scanned since diagnosis, most CLL Specialists don't do CT scans anymore. They just don't tell them a lot when it's already known it's in your nodes.

kupers profile image
kupers in reply to Mldeterm

Thank you so much for your reply! It helps a lot. I'm heading for the CT scan this afternoon and its good to know not to get too worked up over it. Also wonderful to hear that after this 'discovery' period things can to some extent return to normal everyday life. I feel like lately this has consumed me 24/7 but I guess thats to be expected. Thanks again for all of the support! :)

I have 13q deletion all my lymphs are basically all bulked up but blood is minimally affected. It's not that unusual. I've been on wandw for 15 months. Only other symptom I have is some fatigue but exercise helps a lot.

DebLeeCox profile image
DebLeeCox in reply to Awksom

Thank you so much for your advice. May I ask what exercise you do? At the moment I'm so scared to do anything for fear that I'll make things worse!

Thanks Debs

Awksom profile image
Awksom in reply to DebLeeCox

DebLee, I simply walk about 2 miles (3km) minimum every day . Nothing fancy but it helps me quite a bit.

I have had similar. Was on watch and wait but nodes got too big. On a clinical trial with two drugs. Imbruvica and Venetoclax. I am doing well. Not many side effects. I have continue to work the entire time fortunately.

1) find a CLL specialist.

2) Study all the trade-offs of treatment options so when time comes you know some of the negative effects of some of the the treatments. Especially some of the long term affects.

Dear DebLee

First of all, we all wish you a happy trip on the journey you are now starting. Even tough you are on the youn side at 39, look at it positively. It may mean that you will be strong and vital when if and when you will have to be. I was dx´d w/CLL upon turning 75 about 5 yrs ago and still am on W&W , with my only symptom of my leucocites in the 20M range (normal range 4 to 11M) and being tired in the early afternoon, which I solve by taking a nap.

I notice you are under te care of an hematologist, but make sure that he/she is well vesed on CLL as there are infinite varieties. Also preview any possible changes and anticipate as much as possible any course of action.

We all wish you well and also paricipate as much as you can in websites such as this.

intermark

Hi DebLee,

I can certainly empathise and commiserate your plight re the enlarged lymph node proliferation I too suffered them badly before treatment. Especially those around the neck and head and collar bone. Not pain exactly but tenderness always being aware of them. I had this lymphodema after a bad case of swine flu. 4 yrs after diagnosis! Ended up the chemo route eventually!

Listen to all the advice from the good folk here. Visit us often. Let us know how you go.

Warm compresses might help. Like a heat pack. Or just heat up a small towel or flannel and apply.

I'm an elder and surviving.

Sheila in oz

Hi! Welcome to the group. I too have swollen lymph nodes and W&W, blood check every 3 months. Is your white blood count elevated? Have you had c-scans? Have you have a bone marrow biopsy? This will tell you for sure if you have CLL. I was diagnosed two years ago at age 54. My advice is to stay in this group because they have the experience and so much knowledge and support. Especially go and live your life and don't let this get in your way. I Know at first it is scary and alarming, but don't let it consume you. We are all here for you.

Thank you Michelle! My white blood count is 10. I have had a Ct scan and it show swollen lymph nodes everywhere. At the moment my neck glands are a little sore to the touch especially behind the right ear. I have not had a bone marrow biopsy! Ouch that sounds hectic ! Is it done while you're awake and is it painful? My haemotologist also test liver function every 3 months with my blood tests and that all seems normal still. Why would one need a bone marrow biopsy ? To see if it's in the bone marrow?

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to DebLeeCox

You don't need a bone marrow biopsy to diagnosis CLL, usually a blood sample is adequate. If it is unsuitable, you might have SLL, so a lymph node biopsy might be performed.

A differential flow cytometry is used for a CLL diagnosis and it uses B Lymphocytes... the white blood cell count [WBC] , isn't used in this determination.

~chris

AussieNeil profile image
AussieNeilAdministrator in reply to MichelleM61

Generally all that is required to confirm you have CLL SLL is a flow cytometry blood test. There are rarely situations where it's not clear, in which case seeing a haematologist/oncologist specialising in blood cancers will be necessary.

CT scans and bone marrow biopsies are not required for a diagnosis, but may be useful in some circumstances.

Neil

Hi back! My WBC is 21.1. Here in the US I think anything 12 and under is normal. I don't think you have CLL-just my opinion. Yay! You need an haematoligist oncologist. They can do the bone marrow biopsy and rule in or out it is CLL. Haveyou been sick? That might have your lymph nodes swollen, but then you should have a higher WBC fighting some kind of infection. Do your doctors just think you have CLL because your nodes are swollen. Oh, I was put out and so it did 't hurt at all having the bone marrow biopsy!

AussieNeil profile image
AussieNeilAdministrator in reply to MichelleM61

As mentioned above, it's the lymphocyte count, specifically the number of clonal B lymphocytes and their CD markers which determine a CLL diagnosis. In some cases. e.g. with the SLL presentation, it is possible to have a normal WBC count and even a normal B lymphocyte count. A flow cytometry test of a swollen lymph node may be required to determine the correct diagnosis.

Neil

Ok, my doctor said he thought I had CLL due to higher WBC, but the bone marrow biopsy would confirm it. I don't understand all this lymphocyte and flow testing which I need to study up on. Thanks!

Flow Cytometry and the FISH test can be done using blood. If the results aren't conclusive or sometimes, if your specialist wants a baseline number, a lymph node biopsy or bone marrow biopsy is done. Both tests can be done as part of the biopsy, also.

Michelle - Is your doctor a hematologist who focuses on CLL? Ask if you have had a Flow Cytometry test. It will confirm or rule out the diagnosis.

Deb, like you I was diagnosed when I was still in my 30s (also in a January, back in January 2005). I went in for a blood test because I was slightly concerned about some small swellings in my neck - and then discovered I had CLL. What turned out to be swollen lymph nodes were my only symptom. The similarities in our situations have prompted me to register to post for the first time after a long period of lurking. We're all different, of course, but 12 years later, and my slightly swollen lymph nodes haven't become any larger (as far as I can tell), and I'm still on watch and wait. For the first two years I was tested every 3 months, but for the last 10 years I've only been tested annually. I exercise (cycling) regularly, frequently travel 14-24 hours to other continents for work, and have a 2-hour regular commute in each direction without any ill-effects.

It's understandable if you're stressed and concerned in the immediate aftermath of the diagnosis, but don't panic. Until you have all of the facts to hand about your personal situation, there's no reason to assume this will necessarily have an immediate negative impact on your daily life.

DebLeeCox profile image
DebLeeCox in reply to Vakraas

Thank you for you reply. Makes me feel so much better!

PaulaS profile image
PaulaSVolunteer

Hi DebLeeCox,

Welcome to the group. It’s been great to see how many folk have responded to your first post here, and given you such helpful feedback.

I was encouraged that you’d decided to "follow" the original "Coping Strategies" post, and hope you found it useful. However, that post is now closed to new comments, as it’s been updated and re-posted, along with its other sections. You might like to look at the updated posts - collections of practical tips for newcomers, all aimed to help folk on their CLL/SLL journey. They are very much a joint effort - contributions from lots of folk.

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Do continue to keep in touch, and feel free to ask any more questions or share what’s on your mind.

Wishing you well,

Paula (in England)

DebLeeCox profile image
DebLeeCox in reply to PaulaS

Thank you Paula!

Hi, I am happy to have joined this group. I am also new to this site and would appreciate any guidance anyone may have. I am 44 and was diagnosed with CLL less than a month ago. I caught a virus in December and my whole neck down to my collar bone was in small painfil glands. WBC were at first 16 then went to 25 (now they have dropped to 17). The lymocites were also high up to 53% and by being persistant with my dr I managed to see a hematologyst and schedula a flow citometry test. The CLL score came out 5/5 which confirmed the diagnosis CLL/CD38 and CD49d. The plan is to do a FISCHE in May to get an overview of the prognosis for progress of the leukemia. I am too on wait and watch. I changed my eating habbits and plan to exercise more. Even though the lymph nodes all over my neck withdrew after the infection I still feel uneasy around the collar bone. I would like to know how people manage to avoid infections as I was told that is for now what I can do for myself. And also what does the CD38 and CD49d proteins mean, what do rhey tell us? Also what information will be givrn by the FISCHE test? Bone marrow test is not suggested but as I read it is not neccessary at the beginning but only when starting to take treatment. Thanks for sharing your knowledge! Eva

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