I am having painful lymph nodes on the right side of my neck it started all about three weeks ago. My lymph nodes are about 2 cm It is affecting my neck it feels like pressure. I am on the watch and wait intermediate stage my oncologist recommends to just watch them for now.
I have taken Norco but doesn't really help. I tried heat. Does anyone have any suggestions for me as I still am working as a radiology nurse and wearing lead which irritates it more. Sometimes I get numbness down my arm and sometimes I feel like my throat is closing off.
Any suggestions would be helpful thank you I love this site it's helps me so much!
Hi Dottie. My lymph nodes are painful too. Like yours, the nodes in my neck are also 2cm.
I mentioned this to the CLL nurse two years ago and she said that they should only hurt if there is an infection.
They also hurt if I'm more active. For example, housework or decorating. During the colder months I have taken to wearing a neck scarf all the time because the warmth helps ease the pain.
It's not only the nodes in my neck that hurt. However, I've come to the conclusion that this is normal for me now along with the vibrating sensations I have at various places all over my body.
I can't help you any more than to share my experience. The numbness and throat sensation you have sounds really distressing.
Silly question: Have you been able to discuss with a CLL specialist rather than a general hamatologist. I realise that might involve more travel, but most of us that have done that have found it well worthwhile.
If you care to publish your location/area in the USA then I guess somebody here on HU can recommend a specialist.
If you go to cllforum.com and do a search for castor oil there is a good description about how to use them. It even includes how to clean up afterwards, something that I would imagine would be an issue with the oil. Several people have posted, on various sites, that this approach helped.
When I was 38 I was diagnosed cll. Fcr in 2007. MRD in 2008. Ebv in 2011! By the end of that year I had what felt and looked a bit like half a cricket ball on the left side of my neck. A local anaesthetic operation removed the lump. An infected node. And tests showed CLL or sll cells. A year later same again! This time I had general anaesthetic . The lump was closer to a big artery and my throat. Cll again of course. Both ops had no repercussions afterwards and I have had no lumps like it since. Fcr in 2012. Dexamethasone and bendamustine in 2013. Ibrutinib since June 2014. Seven months of three a day. And just stopped for a week due to neutropenia and severe arthralgia. Good luck with your lumps.! I'm just saying I guess lumps can be taken out when needed.
I see that you've been on Ibrutinib since June. How have you found it? I am soon to have treatment and the consultant thinks I will be put on the flair trial, which means Ibrutinib. Just wondered how, for you, Ibrutinib compares to FCR.
Similar thing here, if you're like me it gets you down from time to time. I am stage A, on watch and wait and always suffer with painful nodes albeit mine appear a little smaller - those that I can feel are probably 1 - 1.5cm although a CT scan at diagnosis revealed others somewhat larger. I've been told that they should be painless! I've also had the 'closing off' feeling in my throat from time to time.
Mine were apparent in my neck prior to diagnosis back in late 2012 (traced back to early 2011 via previous bloods). They are always there and continually swell and reduce presumably dependant upon what infection I'm fighting. Since diagnosis I have found them in more and more places and where I was previously aware that there was one there are now, on occasion, several. Mine are affected by exercise and body strain encountered in just living my day to day life. I currently have a problem with my groin which is affecting my ability to some things as I would do normally. I think this is all part of living life with CLL lingering in the background. I've found heat works especially those in and and around joints - I get my wife to place her hand on one in the crease of my elbow and it really does feel better after!!
The advice I was given by my consultant was not to worry as other indicators aren't progressing at any great rate and to' take two paracetamol when needed'. i was also told to come back when they are the size of a plumb or small tomato! On the pain killer front, having tried most of those readily available, I haven't found any that have any great affect so I've decided to try and live with the pain/discomfort as best I can only taking pain killers when absolutely necessary, I think more for the placebo effect than anything else. I really don't want to live on pain killers that don't appear to be beneficial (I'm sure the day will come when I'll need them for real!!!). I'm due to see my consultant in a couple of weeks and intend discussing this in more detail but in my case I think I'm just going to have to put up with it for now.
I'm not sure if this will help but I think what I'm trying to say is it's probably a lot more common than is apparent and whilst it's difficult to manage the pain and discomfort it most likely isn't too serious as an isolated symptom and in the greater context of the illness (my opinion not authoritative).
you have received lots of advice to your question - probably because our bodies are all different - and what works for one person may not for another. Sometimes it's just trial and error.
I, too, was first diagnosed in the intermediate stage with enlarged lymph nodes. And, like you, they were uncomfortable. After a few years the nodes became a little more painful especially those pressing on nerves in the groin and neck. The usual painkillers helped but not completely.
Also, my throat began to feel it was closing up as my tonsils began to enlarge - so worth getting them checked. I chose to have them removed (not an option to rush into!) partly because I was also having so many mouth/throat infections. Swallowing became slightly more difficult too, though sometimes it can just "feel" as if your throat is closing.
It may be that you are approaching treatment. What are your blood counts like?
If you are, then treatment will almost certainly solve your issues. If you are not, check with your pharmacist or the specialist nurse attached to the clinic you attend (if you have one) for further suggestions to help ease your discomfort.
I do hope some of the advice from the replies you have received will help - and if you want your posts to be read by community members only (rather than everyone who may Google "painful lymph nodes" then look for the padlock stating you only want members to view your questions.
Hi Dottie, further to Fieldmeadow's comments, you can change your question to 'closed to this community' if you wish via the 'v' to the right of the "Recommend" button under your question.
I've had a couple of episodes of neck lymph nodes becoming enlarged and very discomforting - particularly when I turned my head. That lasted over a month before resolving and applying heat did provide temporary relief. While it wasn't actually painful, I was getting rather worn down by the constant discomfort. As you say, it feels like pressure.
Hopefully you'll find the many tips provided by others helpful and you too will find this only a temporary inconvenience.
While I can't give medical advice you might talk over with your doctor the idea of getting an antiviral medication to see if that takes the swelling and pain down. For three years running and exactly at this time of year when viruses are running wild, I had occipital node swelling to the point of producing near nausea from the pain. I self medicated with L-lysine and aspirin which had always blunted a perennial herpes simplex attack years before my CLL DX. Both L-lysine and aspirin have anti viral properties but a stronger prescribed med like Valtrex (Valacyclovir) might work on just one idea that the swollen nodes are in response to a viral infection on top of your CLL.
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