Hi all

Last October I had a radical lingual tonsillectomy and a large mass removed from base of my tongue and back of throat. My biopsy of lingual tonsils said I had mature B Cell Lymphoma and the mass (they lost most of it) was reactive lymphoid hyperplasia

Since then I have been suffering with multiple throat infections, reactive lymphoid hyperplasia on my tongue and base and up the back of my throat, I get sharp pains in left side of my neck, along my jawbone and into my collarbone, any suggestions?

I am steadily getting worse, my voice keeps changing, I am fatigued always, difficulty swallowing still and much more, any ideas would be greatly appreciated!!

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8 Replies

  • Hi Hellbell,

    I a sorry, I don't have any suggestions for you, but wanted to let you know that my heart goes out to you!

    Sharon xx

  • What an empathic response Sharon! I wonder how you are doing?

    With good wishes,


  • Hi Ros,

    Having a good week thank you, hope yours is too! I put myself back on Plaquenil, my doc ceased because she believes it was causing all my rashes. Since going back on, my energy levels are very good, feel happy and I can exercise! I see my Immunologist in November, so, I can tell her all about it :)

    Have a great night xx

  • Plaquenil is a central drug in SLE. It has a number of side-effects that include it being a slight blood thinner. It is noted for helping to improve fatigue. It is also excellent for rashes from lupus. For example I had not a "malar rash" but a "V-neck" rash which Plaquenil helped reduce.

    The fact that you feel better shows that Plaquenil is necessary. With due respect to your doctor, I think you need to see a lupus specialist. Many rheumatologists are not expert in lupus and have never treated lupus patients.

    I am delighted you are feeling better!

    With good wishes,


  • Ty Sharon! Am currently trying to find out if this is lupus or SLE getting more frustrated and feeling ill constantly! Thanks for support!

  • SLE = systemic lupus erythematosus or "lupus". This is different from discoid lupus or lupus of the skin. There are lupus variant conditions and many doctors become confused and so too patients with the many different "labels" such as mixed tissue connective disease. MCTD is a lupus variant condition and to all intents and purposes, is lupus and should be treated as lupus. What this means is that some patients have features of SLE and other autoimmune conditions such as poly or dermatomyositis.

    Whatever the "name", your lupus specialist should be treating you irrespective of the name. My advice is that you need to see a lupus specialist. Not all rheumatologists are expert and some have never seen or treated people with lupus.

    With good wishes,


  • Hi there. I'm sorry that you are having to go through this. My partner (although not same) has a rare lymphoma non hodgkins and received a transplant in the end - is doing well now. What helped him a lot was a positive outlook and desire to fight it. Easier said than done I know. Maybe he was just an odd case! Ha ha..

    With regards to the collar bone pain etc I get a pain there and neck/on inhaling deeply. Sharp severe pain. Comes and goes after a few hours. Although I don't know what the pain is and perhaps yours is related to your health issues that you already know about - the only thing that helps me is not moving and breathing to deeply (?!) and a hot water bottle over the collar bone area.

    I imagine you have received quite a bit of treatment and hope you've been responding well.. And take it easy.

  • I am very sorry to read this and I can understand how anxious you may be feeling. However, this community is specifically for people affected by systemic lupus erythematosus.

    May I suggest you contact communities that specialise in cancer and specifically, lymphoma.

    I did find the following which may be helpful in relation to reactive lymphoid hyperplasia:

    With good wishes,


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