Mom is still on W&W, she has enlarged lymph nodes. She got one this morning in the back of her head (we are not sure it is a lymph node but looks like one and the general physician said it is) and it is extremely painful. Her CLL specialist said its nothing to worry about and we can come in for a check-up tomorrow, but I'm worried and she cannot sleep because of the pain.
Did anyone else experienced painful swollen node on the back of the head (not neck, literally under the hair), and if yes did it go away or how did you dealt with the pain?
Thank you in advance!
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paula_dae
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I had a couple painful nodes. My nurse told me cll nodes are not painful (But if I could have lent her mine for ten minutes so she would know ) . I suppose that's generally true, but you can get one in the wrong spot and they hurt like hell.
I do not think there is a whole lot you can do. Applying a warm compress and taking tylenol helps. Some people suggest castor oil packs, I never tried that.
I do think nodes either tend to wax and wane or you get used to them. After a day or so, the one I had that was particularly painful calmed down. I could still feel the lump, but it stopped hurting for no particular reason I could tell.
I would put some moist heat on it, just a hand towel soaked in warm water, and take tylenol. In the bigger picture I would want to know if your mom is nearing treatment time as a lot of the cll drugs we take do a great job of shrinking nodes. Ibrutinib literally melted mine away in the first week or two.
Some people deal with nodes for many years before treating. Everyone is different.
Thank you for the reply. I assume she is nearing treatment, but the doctor is still postponing, because exclude the nodes she is feeling great. Very energetic and her platelets are in normal levels, despite WBC rising.
That makes sense Paula, I would not think a pesky node now and then in and of itself warrants treatment. I know when the painful one I had popped up out of nowhere, I freaked out a bit. But the node popping up for me corresponded with other treatment indicators happening so I never had to deal with palpable nodes long term. I know a lot of people deal with nodes for many years before treating.
From personal experience, and from what I have read in comments for others, I do think there is a good chance your mom's node pain will resolve on its own. The couple days mine hurt I found warm compresses and tylenol helped. jeff
I agree with Cajunjeff, having had this painful node experience with my neck on several occasions. I actually posted about it 5 or 6 years ago, asking for suggestions and I'm still in watch and wait all this time later. It is very wearing when it happens.
If you look at the Related Posts (to the right or below this reply, depending on how you view this site), you'll see other members asking about this, so your Mom is far from alone experiencing it. Great to hear that your Mom is otherwise doing well.
I have one on the back of head. When I notice something unusual, I google "lymph nodes human body" image. That's how I determine where the nodes are, and by golly they're all over the place! And yes, the one on the back of the head is annoying (achy)! Best wishes!!
I empathize with your Mom. I had an uncomfortable swollen node on the back of my head behind my ear. It was 2+ cm in size and was quite visible. The swelling went away as soon as I began treatment.
I have been on w&w for going on 7 years and have no symptoms (except for slowly increasing counts - wbc is about 50,000.) A few months ago I had a swollen lymph node in the same spot you are talking about - the back of my head under my hair. I had no idea there was a lymph node even there! Of course I was freaked out and came here for reassurance and was told it was probably no big deal but to leave it alone (which is hard to do!!) By the time I saw my oncologist it had gone away on it’s own and he was not concerned. It is scary though and makes us aware of the disease that most of the time I forget I have. Hope your Mom feels better and thanks for being there for her!
Hello, what I've noticed is that in the beginning, one extremely large node started on the left side of my head and at the time, I was told to use a warm compress on it bkz no one knew what it was and was given an antibiotic. Little did I know that the nodules started coming, moving down to my neck, face behind my ears, breast, and eventually everywhere. Underarms, elbow arms, and groin area on both sides. Diagnosed after having a breast biopsy that it was called CLL stage 4. Started treatments right away after having many, many, tests and was put on Dexamethasone, bendeka, and rituximab. Boy, was I miserable. After being on the above drugs for awhile, my oncologist decided to put me on Ibrutinib, 420mg. I've been on it for at least 4 months and noticed an improvement in the nodes. So why am I sharing all of this, it's because your mom is not alone and we've all been there. I believe the doctors call it head and neck cancers and yes the nodules are very painful and will keep you up at night because you can't even lay on a pillow.
I had them up under my hair when I was first diagnosed. They were painful and itchy too I think because of the skin stretching 😄. They went away with chemo treatment but eventually came back as my numbers began to rise. I made it 5 years before needing treatment again. They were uncomfortable to lay on and were tender to the touch. They sometimes ached during the day but not unbearably. After I had more chemo and now am on Imbruvica they have disappeared.
I am a 66 yo woman was on W and W for two years suspected CLL but Increasing lumpy lymph nodes. Always been healthy and energetic. Take no other meds. About a month ago a node under my jaw grew quickly and became painful for the first time. Haematologist immediately ordered biopsy and a Non Hodgkin's Lymphoma Dx. Diffuse large b cell Lymphoma (richter's). I did what I've resisted before and googled to see a poor prognosis. Don't do this. There are Richter's Dx AFTER chemo which are resistant. I am just home from having R Chop chemo treatment. First of 6 every 21 days. Immediate huge positive response. 4 days in hospital.. Pretty tough but so am I.. Hopefully only outpatient C. Clinic from now on. See you Doc asap and all the best. I'm in Australia.
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) . I suppose that's generally true, but you can get one in the wrong spot and they hurt like hell.
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