Curious if anyone has had this experience. One day I suddenly felt something behind my ear about 2 inches on skull or in my head. Within 24 hours it hurt so bad I couldn't touch it or lay my head on a pillow. I checked for a bug bite or redness and saw nothing.
I may have over reacted but I was alarmed, so I went to urgent care. The Dr said he couldn't see anything either but when he touched it I about came off the exam table. He felt it was between the skull and the skin. He ordered a ultrasound and gave me a script for clindamycin.
I took ONE pill before going to bed and in the morning it was about gone. After taking just my second pill it was gone. Three days later results of ultrasound-"reactive Lymph nodes"
I have lymph node involvement throughout my body but this came and left in 2 days
Happened to be seeing the oncologist that day. He wasn't alarmed, and said it was strange .
Hasn't come back. I haven't been in treatment since 11/17 . Anyone have a similar experience.
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Rico49
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Rico, to my lay understanding, our lymph nodes can grow from our Cll, an infection, or both.
I wonder if your urgent care doctor understands Cll. He prescribed you an antibiotic, evidently attributing your swollen node to an infection rather than your Cll. Unless you had other signs of a bacterial infection, it seems to me the doctor should have suspected Cll as the cause. Antibiotics would not help Cll nodes I would not think. Perhaps the urgent care doctor thought it might be Cll or an infection and it couldn’t hurt to try antibiotics.
I don’t conclude that the antibiotics reduced your node. It wouldn’t seem antibiotics work that fast. Maybe they did the job, I’m no doctor for sure.
I think it possible that you had a Cll related node spontaneous get less symptomatic. I had one behind my ear that hurt like hell. My doctor had said Cll nodes don’t hurt. I love the guy, but also would have loved to give him my painful node to disabuse him of the notion they don’t hurt. 😎
I think it’ might be that the nodes themselves don’t hurt, but rather they get in an awkward place where they compress a nerve or something.
I don’t understand why your oncologist would find your complaint strange. To my understanding Cll nodes can wax and wane on their own. The very painful one I had, I could feel it and it never went away until treatment. But the pain let up spontaneously.
Other than a reminder you have Cll, I don’t think the occasional node popping up is a big deal. It’s par for the course with Cll.
On an unrelated note, I see that you are seeing an oncologist, not a hematologist. If so, before you treat, you might seek out a second opinion with a Cll specialist. While a Cll specialist can be an oncologist, a general oncologist is rarely a true Cll specialist.
Nor is a general hematologist, but most true Cll specialists are hematologists by trade, not oncologists. Our treatment options change so rapidly, and there are so many other complex cancers out there, it’s near impossible for a general oncologist to stay up to date with each and every cancer.
That’s not to say your oncologist is not a Cll specialist, I don’t know. I’m just observing as a general rule they are not. I did not know that when I first got Cll and was being treated by a very sharp young general oncologist. I was fortunate to seek a second opinion as he was going to treat me at diagnosis with an outdated chemo option.
Good luck. Perhaps others will have stories of their nodes waxing and waning like mine did. It sure hurt for a few days. It completely went away with treatment.
A couple clarifications. Thank you for your comments.
1. The urgent care Dr 's exact words were " I'm not sure what I'm treating but I'll start you on an antibiotic until we get the ultrasound. " He couldn't see anything that was inflamed, or signs of infection unless it was an ingrown hair that was below the skin ?? He was a retired military Dr so I'm not sure how much experience he has had with CLL. I told him I had CLL but like your Dr he probably thought nodes don't hurt from CLL.
2. I shouldn't have said oncologist. My Dr is a hematologist-oncologist with 30 years experience. He works very closely with Moffitt Cancer Center where I have DR Pinilla ,who is internationally known for CLL .😀
3. How long did your pain last?
4..My node was behind the ear also - and yes I'd also tell your Dr it hurt like hell. I can't believe it got better after only one dose of antibiotic either. So I think this will go in the file of unsolved mysteries.
I know exactly where my troublesome nodes are….because they stab with an earache/toothache like pain from time to time. The pain mostly goes away within a day.
Thanks that's what happened. Has a doctor suggested what may cause these troublesome nodes. I have swollen nodes everywhere but this is the first time pain has presented itself.
Rico, as the name chronic lymphocytic leukemia (cll) implies, cll is both a lymphoma and a leukemia. We have a type of white blood cell known as lymphocytes which are the cells affected by cll. When cancerous, our lymphocytes divide and grow to unhealthy levels. These cells deposit both in our blood (leukemia) and our lymph nodes (lymphoma).
So to answer your question, what causes our nodes to swell is lymphocytes from our blood migrating into our lymph glands and lumping up.
Cll is heterogenous and we all have different versions. Some people have their cll cells mostly in their blood, others get it mostly in their lymph glands. Most of us have some combination of the two. I hope that answers your question.
Hey Rico, thanks for the clarification and I’m glad to learn you have a top specialist. I was fairly close to starting treatment when the node behind my ear started to hurt. The first year of watch and wait, it was the only node I could actually feel. It was pea size and it took me awhile of learning about Cll to even connect the two.
A couple months before treatment, it got noticeably larger and started to hurt. The physical pain might have been a 3 out of ten. The mental pain of having a constant pain to remind me I had Cll was much worse.
I want to say it stopped hurting after a week or so, but the lump was now bigger than a pea and always palpable. It drove me nuts. I would read on the forum about people dealing with true bulky disease with multiple nodes and I felt quite the wuss freaking out over a little bump behind my ear, truth be told, I am a wuss (can we say wuss on here? 🫣).
I ended up treating shortly after it started hurting, although the decision to treat was unrelated to that isolated node. I am happy to report ibrutinib melted it completely away in a matter of a few weeks.
I don’t know where the “Cll nodes don’t hurt” mantra started. I suspect we have dozens of members on here with painful nodes who would issue with that. Like I wrote earlier, it might semantics. The node may not hurt, but if it abuts a nerve, the nerve hurts. Perhaps the nerves adjust or move over or whatever, explaining how the hurt can spontaneously resolve.
I don't think anyone is a wuss if in pain. .mine was a 9 or 10 if it was tou hed.I have sworn nodes everywhere but for whatever reason this one decided to be a pain. Thx
Yes, I too have been told that “lymph nodes don’t hurt.” However, I have had bulky lymphs since the beginning. I have one (or more) nodes up at the top of my neck/bottom of my head, which give me terrible headaches from time to time. I think that the nodes are pressing on a nerve. I usually do not take anything for pain when this occurs, because the a/e of the pain meds are so unpleasant, and don’t really help. I had this happen tonight, and I was on the bed, and had a heating pad on the area. This gives me a little relief. Take care, folks. Will begin Zanubrutinib soon, likely in late March, after diagnosis in August 2018.
My nodes would react to infections, any little cold, sore gums, I would know something is coming even before the symptoms start as my lymph nodes would enlarge and get tender (usually near the area - e.g. lymph node near my elbow when a cut there got infected, below my jaws when I had sore gums, etc.). You might have had an infection and this was the reaction you had...I also had enlarged occipital nodes at the back of my head after my first pneumonia jab, lasted about 2 -3 days. I was also treated once for lymphadenitis. Anything that you noticed - sore throat, runny nose, a cut, a vaccine, etc.? It could have been any of these.
Thanks. That's what was so weird about this, I had no other symptoms. My last COVID shot was in October. I had been very lucky not to get sick as my ANC was recovering from a 0.14 to a 1.6.I have many swollen nodes all over but this one decided to be a pain.
I had that experience in 2014, before I was treated. It was so painful that resting my head on a pillow made me want to weep. My haematologist said it was a swollen node and prescribed me Tramadol, which worked. It disappeared after a couple of days and never returned.
Interesting. Sounds exactly like what happened to me . Mine went away in. one day after 1 dose of antibiotic.I find it hard to believe that one dose of an antibiotic had anything to do with it going away. I'm filing it as an unsolved mystery.
This sounds like what I have experienced, either trigeminal neuralgia or glassopheryngeal neuralgia depending exactly which nerve. It lasts a second, comes and goes.
I got a reaction like this one time when I dusted. I normally wear a mask but this time I forgot. I was all freaked out because I could feel it two days before it pooped up. I made an appointment with my primary doctor and he said the dust started a reaction that started a sinus infection. The lymph nodes enlarging was my body trying to fight off the infection. Of course my body lost and I ended up on antibiotics. Mine come and go everytime I start to get sick unfortunately. On the bright side I always now a day or so in advance when I'm getting sick.
Thank you for sharing. I have many lymph nodes that are enlarged but these two little guys just popped up all of a sudden. And went away just about as quick. I'm filing it under another mystery unsolved. Sounds like you may have an early warning system. 😁
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