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Newly diagnosed Non-Hodgkin lymphoma

FrankOwl
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Hi, I was diagnosed yesterday with Non-Hodgkin lymphoma. I don’t appear to fit into the ‘typical’ categories for this disease, being way under 65 and not a man. Strangely the 3 other people I know of with this are also female and way under 65. Perhaps there’s something in the water in the city I live in...

My only symptom was an enlarged left tonsil 3 months ago which continued to grow rapidly. I’m hoping the lack of any other symptoms (except fatigue) may be a good sign. I have my first Haematology appointment next Tuesday. I had a tonsillectomy 4 weeks ago, so after a long wait for results I was convinced it was tonsil cancer and spent too much time looking into that. Non-Hodgkins came as a shock. As of yet I don’t know what stage I am or my treatment path. Any advice as I start this journey or anyone’s experiences would be appreciated. Thank you x 

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    Hi,  My husband was diagnosed with Non hodgkin lymphoma on the 7th January 2019.

    He had a urgent referal to ENT on the 11th December due to a enlarged right tonsil.  Tonsillectomy was performed on the 28th December and he had a CT scan on the 6th January. 

    He had no other symptoms apart from an enlarged right tonsil. My husband is 48 years old.  

    Our first appointment with haematology was on the15th January. The CT scan didn't show any spread which was great, but he had to go for a pet scan which highlights any cancerous cells that the CT doesn't pick up- it also stages the cancer. We were told that he would need Chemotherapy- R-Chop which would start on 31st January. The consultant  had a good feel of his neck, groin, armpits and stomach and couldn't feel anything. 

    We went back to the consultant on Tuesday and finally got some good news.  The cancer had spread but only to the left tonsil- which was a massive relief.  

    Hubby had 1st chemotherapy on Thursday and he has been amazing.  No side effects which is good.  We went on a walk yesterday and also shopping.  

    My husband has Diffused Large B Cell Non hodgkin lymphoma. 

    We are so positive as a family.

    I am wishing you lots of luck and stay positive. 

    Xx

  • Offline in reply to Lizzie4

    Thank you, it’s really helpful to hear this info, sounds quite similar to what I have experienced so far. Good to know what tests I might have to have. Glad to hear your husband’s cancer hasn’t spread far. Do you know how many chemo sessions he will have to have? I hope he continues to do so well throughout the treatment x

  • Offline in reply to FrankOwl

    Good Morning, 

    The consultants are having a meeting this morning to discuss how many chemotherapy sessions he will need.  He is down for 6 but it may change to 3 then radiotherapy. They are going to ring us later today. 

    They will also tell us the stage.  The consultant has said he will be either stage 1a or 2a.

    Just to prepare you,  everytime you go to haematology they will take some blood  - I don't think David has any left.   David had to have a heart scan and echo test before chemotherapy started. 

    Take care

    Xx

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