My mum was dianogsed with CLL in late Jan following a screening for breast cancer that picked up on enlarged lymph nodes under her arms. Since then, she's had two consultations with a haematologist and a further scan and blood test. Though the blood test showed a high lymphocyte count (but otherwise normal platelet and red blood cell counts), the haematologist reassured us at our last meeting on Thursday that my mum's cancer is likely at a relatively early stage based on the size of her lymph nodes and the lack of obvious outwards symptoms such as night sweats, and that she most likely won't need to begin treatment imminently.
With this in mind, we were feeling relieved going into this weekend, though with lingering concerns following comments from the haematologist suggesting that the CLL cells might be in my mum's lungs (see below).
However, yesterday morning, my mum noticed that the lymph nodes on the back of her neck are swollen. The lymph nodes are visibly enlarged, and evidently very painful. My mum is normally one to downplay symptoms, but it's been obvious to my dad and me today that the lymph nodes are causing her a lot of pain. She has been wincing and asked my dad to cut her hair back this evening as she felt the weight of her hair against the swollen nodes was making the pain worse. She's certain that the swelling is a new development, as she has been monitoring for enlarged lymph nodes since her initial diagnosis and only noticed them this weekend along with the pain. It also wasn't picked up on when she had an initial physical exam by her haematologist in early Feb.
I don't think it's normal for lymph nodes to swell up seemingly overnight with a slow-acting lymphoma like CLL, so we are very worried. My mum doesn't have any other obvious symptoms beyond the swollen lymph nodes on her neck and the pain associated with them, so we don't think it's an infection. Searching online for sudden lymph node swelling in CLL is leading me to lots of studies on Richter's syndrome and I am now imagining the worst.
We are going to call the hospital on Monday, but I am wondering if anyone here has any advice in the meantime. Perhaps it is not unsual for lymph nodes to suddenly flare up in CLL?
Separate to the above, more immediate worries, we are also nervous about comments the haematologist made during our last consultation suggesting that the scan my mum had showed evidence of "small nodules" in her lungs. She suggested it was likely to be the CLL but that she wasn't sure, and that a biopsy woudn't be practical. When asked if it is common for CLL to spread to the lungs and what the implications are, we didn't get a clear answer, though it seemingly didn't change the diagnosis that the CLL was likely early stage. The only symptom that my mum has had in recent months and leading up to her diagnosis was a persistent - and new - cough, so we are now wondering if the two are related.
Is it normal for CLL to spread to the lungs and show up on a CT scan?
I'd be v. grateful for any advice other members of this board can offer. I'm hopeful we are just being hypochrondriacs about both of these issues, but we are especially worried right now about the sudden and painful lymph node swelling.
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currerbell
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You hang in there and you have found a wonderful community. I personally haven’t experienced the issue with swollen and very tender nodes but my younger brother did and he wasn’t one to complain but it scared him to death how fast they appeared. He was put on Imbruvica and is doing super great! We are all very different but please know there are lots of things out there for mom…..you just need to get it all sorted out. Stay positive!!!
Someone with more knowledge then I have on swollen nodes should be getting in touch with you. All the ver best!
First off, try not to worry about those small lung nodules. When we have scans, it's not uncommon to find what turn out to be benign cysts and nodules in our organs. CT scans are in fact not generally encouraged for CLL monitoring, to both avoid radiation and the stress, anxiety and cost of following up what's usually eventually determined to be benign. That said, it's reassuring to have a baseline scan.
Richter's is scary, but thankfully rare, particularly early on. It's more common with some markers but overall the incidence is thought to be around 5%. IF those nodes at the back of your Mum's neck are indeed Richter's, they will probably swell noticeably and your Mum won't feel well. If you have a recent blood test, check your Mum's Lactate Dehydrogenase (LD or LDH) on her blood biochemistry panel. Richter's usually sends that soaring to several times the normal value. Honestly, being newly diagnosed, your Mum may well be making those nodes sore by regularly probing them. We tend to do that subconsciously.
I'm not medically trained and your Mum should certainly get anything she's concerned about checked out, but odds are that she's fine, other than coming to terms with her diagnosis. Honestly, that can take a couple of years.
Importantly, you've found us now and what you'll learn here will be far more accurate than what can turn up by searching online.
Neil
Hi Curerbell,
Just stopping by to say hello & wish your Mom & Dad & you some calming thoughts & well wishes.
Many knowledgeable amazing folks here. My husband has CLL & just wanted to say you found a great place to be !!
Internet is a rabbit hole, I learned that quickly!!
In my case the swelling lymph painful nodes & that CLL had jumped a wet barrier into my lungs was indicative that it was time to move to more aggressive treatment - within a month I’d started the I & V arm of flair trial
My mum's lymph nodes are still enlarged and sore this morning, but she slept with the help of a zopiclone (something I've been trying to encourage her off but that's probably the least of our worries now). We've done hot presses, and she says it's helping, but I think that might just be her humouring me and my dad!
I've checked the blood test results from her 1st blood test, which was taken on 9th Feb. It shows 217 for LDH, against a normal range of 0-250, so that is reassuring.
AussieNeil's comments about the lung nodules are also very reassuring. The haematologist had suggested that these weren't cause for worry, so we will try to put them out of our minds.
What has us worried about the lymph nodes on my mum's neck is their seemingly sudden appearance. My mum would have had her physical exam on Feb 9th, the same day as the blood test, and the haematologist felt around her neck during the physical exam but didn't pick up on anything. During our consultation on Thursday, the haematologist suggested that the CT scan (taken on the 22nd) showed that the axillary lymph nodes, where the cancer was first identified, are the most enlarged, but that they are not significantly enlarged. My mum can barely feel these nodes, and they're not visible to the eye, whereas the lymph nodes that have now swelled up on the back of her neck and very clearly visible to me even obscured by her hair. The swelling is also very localised, it's a line of lymph nodes running from the base of her neck but only on the right side. There's no swelling at all on the other side of her neck.
We will contact the hospital tomorrow and share our concerns and ask if they can look for symptoms of Richter's or anything else untoward in the blood test that they took on Thursday. I am wondering if we should also ask them to do a biopsy of the newly swollen nodes?
If there is anything else we should be looking out for, either on the blood tests or in general, please do let me know.
Using a heat pack can give relief with swollen, painful nodes. If you get to the point of having a biopsy, it's best to have the node removed for examination or at least a large sample taken for examination by a pathologist. A fine needle aspirate can miss any transformed cells. Keep us informed.
currerbell, I haven't experienced swollen nodes, as your mother has, and she is very fortunate to have you and your dad's support through this. It is good you will soon be in touch with the hospital. Finding the cause is a victory in itself! I pray for relief for her discomfort and and confidence with her medical care. Those are two important issues for me. I can be thankful I have a caring GP and a hematologist who take the time to answer my concerns. I attend my visits with written down questions or information I've read about CLL. They are great to talk with. 🙂Sandra
Hi, I can appreciate your concern. I have CLL and breast cancer that is metastatic to my spine, pelvis , sternum and some ribs. I didn't know about the breast cancer because it was silent and never showed up until I was in the hospital for a pretty bad case of covid. It showed up on a CT scan done for my lungs because of Covid. Ok so here is what I learned about from 2 oncologists and a pulmonologist and endo crinologist. ( That enough doctors ??) Nodules showed up in my lungs turned out to be virus related and after a year they are still resolving. They are not due to either CLL or breast cancer. Is there any chance you had an unrecognized case of covid? About the sudden swollen lymph nodes, I had a very large one show up overnight and it was painful. Both oncologists told me that lymph nodes from CLL or breast cancer aren't painful just swollen. That's what they said! And it turned out the one node in my neck went away in few days later. I appreciate the fear that sudden lymph nodes can cause and nodules in the lung has got to be upsetting. I've been there. My pulmonologist said the nodules in the lungs can come from many sources and not all are malignant or from cancer. Airborne fungus can cause them to appear. Common in people who work on farms or simply live in an areas where dirt and dust can travel. I'm not talking rural. I lived in St. Louis and these kind of nodules where common. I think it's histoplasmosis. But I'm not sure I'm right about that.I hope that your situation can resolve on the side of no worry. But people from this group (not necessarily me)are very knowledgeable and can really help. I wish you the best. By the way my CLL recently went into a deep remission and the breast cancer is shrinking on the treatment and does not appear to be getting any worse. I hope all of your news turns out good too.
Thanks for your kind advice, and for sharing your own experience. It's really helpful to read from those who have had similar symptoms to my mum at different stages of their CLL.
My mum has been feeling better this week. The sharp pain from the lymph nodes in her neck eased up on Monday. I spoke to one of the nurses at the cancer centre she is visiting, who reiterated that enlarged nodes were generally a normal experience with CLL and that any sign of a Richter's transformation would have most likely been picked up on the scan my mum had about a month ago, so that was somewhat reassuring. My mum is adamant that she doesn't want to go into hospital to have the nodes examined, so she is going to keep monitoring them for now but will go in to have them checked if the pain returns or she starts to experience other symptoms.
I think what had us so worried is that it was the first visible sign of my mum's cancer since she was diagnosed in Jan. We left the meeting with the second haematologist a week and a half ago reassured that my mum's CLL was likely at an early stage and that she wouldn't need to begin treatment soon, and then two days later she was in real pain. Up until then, she had had no obvious symptoms of her CLL, and the diagnosis was a shock when it came.
We also had feedback of sorts on the lung nodules on Friday. The hospital sent the scans to one of the doctors specialising in lung cancers and they reiterated what the haematologist had told us - that the nodules were too small to examine and that a further scan in three months was the best course of action. I had hoped they could reassure us that they were a "normal" aspect of CLL and not a concern, but in reality I know they can't give us anything that conclusive.
We hadn't considered that the lung nodules could be virus related. We think my mum has avoided covid so far, though it's possible she had it without symptoms last year. We've been doing frequent covid tests and have more or less gone back into isolation since her diagnosis, so it's unlikely to have been a recent case of covid, but perhaps the lingering effectsof an older infection.
I'm very glad to read that your CLL is in deep remission, and that your breast cancer treatment is working well. I hope you're on the road to a full recovery.
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