I was just reading the Leukaemia & Lymphoma Society section about CLL and it stated the following-
People with the faster-growing variety may have:Enlarged lymph nodes. The nodes can compress nearby organs, causing them to function improperly. For example, an enlarged node pressing on the stomach can interfere with gastrointestinal or urinary tract functions.
I was just wondering how true this is? I have have several small swollen lymph nodes in my neck. Does this mean I will have the faster- growing type of CLL? I’m in the UK and haven’t had the testing that can determine what type I have.
Many thanks as always
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Plentyuk80
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Can you share the URL for the article you have read? or maybe the title?
The size of lymph nodes is what is looked at in regard to time-to-treat. Also there is a possibility of having SLL, which presents with more lymph nodes being enlarged--not necessarily larger than we who have CLL, but in number.
However, there is the case for SLL lymph nodes more likely growing in the abdomnal area .
Thank you for the URL. The enlarged lymph nodes that are one of the set of suggestive points have to be 10 cm or more in size (with none of the points by its self as the deciding point--unless there are other factors present)
This list might help you to monitor blood tests at home (can you get a copy? or if you can get your testing info online) and perhaps have any questions you have written down for the next appt. The list above is talking about first treatment, however, the list is applicable to remission/relapse situations also.
You are right to check, there is so much info to learn and to have at hand with CLL, we all find ourselves wondering.
It is true that SLL patients have more activity in the Lymph Nodes (that varies with the individual). CLL patients have more activity in the Blood—that also varies with the individual.
If I were you and in the UK, I would at least ask my Dr. about any nodes I feel and inform/ask when I have a different pain/illness that can't be directly pinpointed by the GP.
You may have only the one GP overseeing you at this point---does he/she change hats for the given appointments so you both know what to talk about? ( excuse my being facetious 🙂)
Others will come at some point with better info for you--I am winding down and you may already be abed. Best wishes!
Well, I have an indolent course. Four years since diagnosis, found in a routine biopys. I have a few enlarged nodes in the neck. Which are the only ones I notice. More in chest and underarm detected on scans, but causing no problems.
Currently fatigue is my worst symptom. Four years after diagnosis. So lymph node swelling can wax and wane. Its not typically a cause for alarm. But if you are seen by a specialist for CLL. They will track spleen size, obvious node size and growth along with any other symptoms you may develop.
Keep in mind, for most people this is a slow growing disease. That said, you need to be tracked with CBC's to observe trends. Along with symptoms I mentioned above. To keep a close watch on any signs of disease speedup.
My spleen enlarging changed an occasional problem with heartburn into one that needed treatment. Then the proton pump inhibitor I had been taking began to affect my eyes. I stopped taking the PPI and changed my diet (what and when I ate). Once I started treatment and my spleen shrank down some, my heartburn symptoms disappeared within 3 weeks and have not returned.
I’ve read that in a couple of spots. I don’t believe they are referring to specific formal subtypes of CLL. Rather, I think what they are trying to say is that CLL many times is an indolent disease that takes many years to get to the point it needs to be treated. For others the time to treat is much shorter.
For those whose time-to-treat is measured in months rather than years, I think it’s fair to say that their symptoms are more apparent. Lymph and spleen swelling, platelets dropping, anemia, severe fatigue (can’t work) are more likely to be seen with patients with fast ALC doubling times (less than one year doubling from a base > 30). And there has been research showing that a fast doubling time correlates with higher-risk CLL features.
But there remains a lot of variability.
Some folks reach ALCs well into the 100s and don’t need treatment. Some folks have ALCs in the low teens and definitely need treatment.
But for many — more than half — ALC counts remain low, there aren’t many symptoms otherwise, and they can go for many years without treatment. 30% don’t need treatment at all.
My read on that passage is “you might be in that slower range so don’t freak out” more than “you either have fast or slow”.
Enlarged in that context means “several centimeters”. As stated above, nodes > 10 cm (or spleen extending 6 cm below ribcage) are treatment flags.
My hubby has what used to be called "SLL"; the kind of CLL that primarily affects the lymph nodes. When he was diagnosed, he was given ALLLLLLLLLL the tests, partly due to the routines here but mostly because his presentation was complex. He was "unmutated" and "stage 4" and I don't remember the rest. He had many lymph nodes throughout his body that were a concern on scans but not detectable visually or with examination. He was in watch and wait for 6 years and only had symptoms that became an issue in the last 6 mos of that time. 6 or so mos before treatment, he would get very large lymph nodes under his arms with any vaccine. They would recede after many weeks. He reacted to many things with hives and itching and rashes. The nodes in his neck grew slowly but steadily. He thought he had a sinus and ear infection. That turned out to be lymph nodes and swelling in his nose, sinuses and throat. It caused him to hear very poorly. The swollen tissue ( not just nodes but tonsils etc.) caused poor breathing, lack of O2 and exhaustion. His spleen being enlarged caused "indigestion". Any of these, by themselves, were not alarming, together....,they added up to treatment time. I don't know if the experts would say he is "fast" or "slow". .,. it was slow for us until all of a sudden, it wasn't.
Edit to add: His blood tests have always been "normal" throughout. 2nd edit: None of his lymph nodes were of a size to warrant treatment. He is a big guy and his face looked full. Underarm nodes can be very large and not be concerning. But many nodes together, their location and other swollen lymph tissue ( such as tonsils) and it's location, was the deciding factor. Even then, it was a choice not an emergency.
He started V+O treatment last spring. He had immediate results with his lymph nodes shrinking. He had a few rough days when he wasn't eating and drinking enough, but worked from home sometimes and only had one "sick day". Cost has been reasonable with our insurance and grants from pharmaceutical companies. Things have evened out, he is very well but has had another sinus infection and rash. We feel blessed as he does all the things he wishes to. His blood tests are normal and we expect him to be done with treatment this spring. Our realistic (?) expectation is that he goes back to a long-term "watch and wait" with a few odd-ball symptoms, more or less like other "old people" with grandbabies and retirement and fishing trips. His doctor reports that he has had *no relapses* amongst his patients that have had V+O. That is VERY hopeful!
I started the same treatment in October. I feel excellent, better than I have in several years. My lymphnodes are non palable and blood counts are all normal. I won't finish until next November. Your husband and I seem to have similar cases. The booster for COVID was my last straw. My lymphnodes went crazy after that one. This V&O treatment is amazing. I never though I could feel so well being treated for cancer. I am 61 female.
Hello Plentyuk80 - this stuff is so challenging to pin down. So many different variables. I was diagnosed in 2017, but probably had it since 2013 or 2014 and it took a bit to show up. My nodes in my neck would get bigger and smaller, so it looked like my allergies were causing that. My liver and spleen enzymes were elevated, but were being watched by the doctor. Whom I fired after 2 years of missing it.
I went back to the ENT and he sent me for a biopsy. Even there I was diagnosed with Lymphoma which is not accurate, but it presents so similarly. He connected me with my Oncologist who is an expert Hematologist as well. He diagnosed me with CLL in 2017 and we started treatment within a few weeks. My nodes shrank everywhere, my enzymes returned to normal. I get normal blood work results every time and my body is receptive.
It’s unknown how long I had it undiagnosed, but he said it was aggressive and called it stage 4. Probably only had it a couple of years, while the internal medicine doctor was wasting time.
Couple of odd things, I was 46 when diagnosed and treatment started. I am told that I’m on the younger side of this. The other thing is that I have not found a lot of information on this, but 2 years ago my uncle, who is 18 years older than I am, was diagnosed with CLL and is in watch and watch. We didn’t grow up in the same area to have any kind of same exposures etc, so there has to be some sort of genetic connection, or a really really big coincidence to have the same exact type of cancer.
Good luck on your journey. I’ve never been able to fully understand all of this stuff and the information that I come across I would have to be an oncologist to grasp.
About 10% of CLL is familial. There is even a US National Institutes of Health study into familial CLL. Sometimes family members can develop other blood cancers.
Hi Meganbo. I was also diagnosed in 2017, and I have also experienced neck lymph nodes that go up and down in size. I do have one lymph node in my neck that has been there since diagnosis, and it has gotten a little bigger.
Also, my grandmother on my father’s side had CLL. She ended up passing away with CLL and not from CLL.
The best method to determine growth of CLL is by blood trends from testing. I have for example a very aggressive CLL by my trending Absolute Lymphocytes Count, (ALC). My ALC was doubling every 2.5 months with no noticeable outside lymph node swelling and veery little spleen enlargement. I did however have 16cm x 18cm x22cm massive bulky lymph nodes in abdomen. Rapid increase in ALC and bulky nodes prompted my doctor’s concern about Richter’s Transformation. If ALC is increasing at a rate less than doubling every 6 months this is not cause for concern. Your doctor will be following your ALC and inform you if it is doubling to fast. Blessings.
You can have enlarged nodes in the stomach, the lymphatic system is right across the body. Also, the spleen can grow with CLL, mine ended up half the size of my abdomen and measured 24CM, and its meant to be the size of a small fist. Enlarged nodes alone is not always a sign for treatment, I had many enlarged, including my spleen and lived quite happily until I started to see infections increase, and my weight dropped. Depending on your mutation (mutated/ unmutated) you may be able to stay off treatment for a long time. You do need to push the NHS for mutation status, and other genetic tests. Also feel open to ask for a referral if you feel you do not have the answers you need.
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