very painful lymph node

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Hi all, new here…i’ve been diagnosed with non hodgkins follicular lymphoma, my first treatment is in 3wks.

My lymph nodes are very swollen, in neck, armpits, groin, abdomen and around spleen, so quite a lot.

Ive been experiencing bouts of excruciating pain in my groin nodes and back, the are sore and hurt to touch, i’ve not been sweating a lot and feel alrite generally.

Has anyone else experienced pain ?

is this usual as i am worried the hospital may have missed something.

  • Hi  and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

    I don’t have Follicular Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable ‘other’ type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    The pain you are experiencing is actually not that uncommon. Raised Lymph-nodes can actually press on nerves and this can cause some very bad pain.

    You can see in my story that by the time I went for my first chemo it looked like I had swallowed a brick!!

    It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted and the pain was horrible.

    I had an initial 15min blast of chemo and that got me through our family Christmas. It was amazing the difference that first Chemo blast made to the point I actually had some Christmas dinner,

    The night staff kept coming in and watching my teeth reappear as my gums started to reduce in size.

    I went in to have 6 cycles of chemo.

    Do you know that actual name of the chemo you are having?…… for example is it called R-CHOP?

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi mike, thankyou for your response and much appreciated knowing the pain can be a common symptom, its worrying as my first session is in 3wks time…i starting with 4 courses of Rituximab

  • At the start it’s all a blur but once you get into treatment the noise between your ears will call down.

    I had about 600hrs of Rituximab as part of my 6 cycles of R-EPOCH and had no real issues with the treatment and it did the job.

    You treatment will be much shorter than my treatment most likely done as an out patient…… I was an inpatient fir 5 nights/6 days.

    I had to have a new biopsy done and results back before they would start treatment so I had to wait a good number of weeks but it made no difference to the outcomes.

    You may find this link helpful Top Tips for the day of your Chemotherapy

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Yes and I still do and my worry was that it would get worse.

    But it has not.

    When it's bad I take Naproxen.

  • Thankyou, I’ve been given co codomol but it’s affecting  my stomach & trouble going to toilet, i will see doc for naproxen