Lymph nodes pain

Hi everyone. I was diagnosed in July 2015 with SLL. My bloods at my two checkups have so far been normal. Just recently my 4 swollen lymph nodes in my neck have swollen and become harder. They ache and the one above my collar bone stops me sleeping on my side. My next consultation is by phone so I won't be examined. I have to wear a scarf now to hide the lumps as I feel like francinsteins (spelling) monster with bolts coming out of my neck! The largest one is about 4 inches long by about 3 inches wide. I don't feel ill in myself apart from my neck feeling so uncomfortable and sore.

I am just worried that I should be doing something. Thanks. Cindy.

22 Replies

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  • Hi Cindy, don't hesitate to contact your specialist nurse (if you have one) or else contact your hospital and ask for a face to face appt with your consultant if you are very worried.

    Lumps come and go and they can be painful, however the important factor is your blood results, so initially perhaps ask for a blood test.

    I had lumps for 4 years before my treatment started (CLL) and the latest findings show better overall outcomes are achieved the longer you are able to avoid treatment.

    Trust your clinical team or else find one you do trust.

    You have to stay positive, if people are looking at you it is probably because you are so attractive, so smile, say hello and get on with the rest of your day.

    PS - No good ever comes out of worrying - try logging onto Headspace and taking up their free trial, I guarantee you will start sleeping well.

    Take care and stay away from germs.

  • Hi Cindy,

    I appreciate with SLL (on which I profess to be no expert), the presentation in terms of bulky lymphadenopathy can be much more of a problem even when blood results are normal as in your case.

    If your nodes have significantly increased since the last consult and are now impacting on your daily life and are painful, I think the upcoming phone consult really needs to be a face to face one where you are examined and the bloods re-done.

    This doesn't sound to be a case where the nodes wax and wane and any significant increase in size should be discussed with your Consultant.

    I totally understand the aesthetic considerations and it must be very uncomfortable for you.

    Hope something can be done to help,

    Newdawn

  • I agree with Newdawn... a node or node cluster that size needs to be examined, sooner rather than later.

    ~chris

  • Your medical team will want to see you when you report the size of the nodes over the phone so best to avoid any delay and contact them so you see them as soon as possible - avoids even more worry and gets you feeling more in control.

  • Hi Cindy,

    I can sympathize with you about the swollen lymph nodes. I too have SLL/CLL and mine were huge for a while. They went back to normal after treatment but are starting to grow again😕 I agree with everyone that you need to be seen by your specialist and another round of blood tests. Knowledge is power. Let us know what you find.

    Best of luck,

    Sally

  • When you have SLL its not uncommon to have normal LAB values when things are progressing. You should probably be seen if your having new enlargement as you mention and discomfort in your neck and clavicle nodes. My concern is infringement on your carotid arteries. You can't see what's going on in your abdomen. When clavicle nodes are enlarged that's a sign something is going on in your abdomen also. Lab values are not the only reason to treat. Enlarged nodes can compromise your health. Best of luck to you!

  • I experienced what you described. I went from CLL to SLL. My WBC went to normal as my lymph-nodes in my neck became enlarged - the size of tennis balls. At the time this did not set off any alarms - "Come back in six months." Far from it, I was about to go over the cliff. In fact all my lymp-nodes were enlarged. The WBC's were building up in my lymph-nodes and bone marrow. I had gone from stage 0 to 3 in a month or two. When I returned in six months, panic set in as I immediately got a CT scan to make sure the nodes were not interfering with other organs and pursued treatment. The bone marrow biopsy showed how far it had progressed and why quality red cells were not being produced.

  • That's scary! I hope you are ok now. I will make an appointment on Monday to get some advice.

  • This is where I get lucky. At the very low point I was offered a place in a Phase 1 Drug Trial for ACP-196. After 12 cycles (28 days per cycle) I am back to normal.

  • That is Lucky! I jumped on board the ACP-196 trial after not tolerating Imbruvica.

  • Ooooh...I'm interested re: neck nodes and the abdomin. My nodes are just starting to swell and ache a little. I also have colitis (brand new to me), but never knew there to be a connection....Cat

  • Thank you all for your good wishes and prompt replies. I guess you are only confirming what I knew I should do really. I do have a blood test scheduled 1 week before my phone consultation but I will see my GP to see if she can arrange a face to face consultation instead. And see if it needs to be brought forward. I have tried speaking to a specialist nurse within my haematology dept before but all she did was repeat the results of my last 2 blood tests. She wasn't very helpful I'm afraid. I'm 54 years old and had hoped I would get longer on watch and wait than 6 months. I'll let you know how I get on. Cindy.

  • Good luck Cindy. I hope you get the support and reassurance you need from your medical team.

    C

  • Thank you. X

  • I was diagnosed with SLL in 2011. And like yourself my nodes became very swollen and painful. I agree with the others, you need to be checked by your specialist. I found that paracetamol helped with the discomfort and managed a year before chemo. . I am now 3years post chemo and so far all is good and sound asleep. My nodes went down within the first lot of treatment, which was good. Hope you get to see your specialist soon. Take.care . . From tigger

  • Hi Tigger, can I ask what the deciding factor was to start your treatment? Was it blood results or your symptoms? I hope your remission carries on forever. Thanks Cindy.

  • I too am SLL rather than CLL and my blood tests have generally been normal and it seems to be the major difference between us and those with CLL who are very focusses on blood counts. I'd go along with the other SSL-er and say you need to see your consultant.

  • Hi Cindy, I really symphathise, it must be worrying. I read "Your life on your hands", by Prof Jane Plant. She has cured herself of breast cancer. She was given 3 - 6 months to live, but 7 years on is cancer free. Of course our cancer is not the same, but Jane had large egg sized lymph swellings on her neck, cut out dairy an in two weeks they were gone. My lymph nodes had just started to make themselves felt and I have cut out dairy for 3 weeks now and they are gone. It's worth a try, but read the book. It gives brilliant eating advice. Let me know if you try and it helps.

  • Hi,

    I have SLL too and my blood tests are "normal"too, but I would agree with everyone else and seek a face 2 face meetin with your Consultant

    Take Care

    Elle

  • HI CINDY. I KNOW THE FEELING ABOUT HAVING SWOLLEN LYMPH NODES. MINE DIDN'T TROUBLE ME AT ALL BUT THEY WERE BIG. THEY WENT AWAY AFTER TREATMENT WHICH I FINISHED FEB 2015. THEY ARE ON THEIR WAY BACK AGAIN. I USED TO TELL PEOPLE I WAS A SQUIRREL STORING NUTS FOR THE WINTER!!!!! YOU HAVE BEEN GIVEN GREAT ADVICE FROM EVERYONE HERE. DEFINITELY HAVE THEM CHECKED. ALL THE BEST CINDY. HEATHER

  • is it true the lymph nodes decrease in size after treatment but grow soon after? Ughhh

  • No, your lymph nodes should stay small after treatment until your remission ends (which may be many years after treatment if ever). Don't forget nodes swell as they fight off infection and shrink back when the infection has been dealt with.

    Neil

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