How many have extranodal lymphoma

Coupe35
Coupe35 Member Posts: 45
in Lymphoma (Hodgkin and Non-Hodgkin) #1
How many have extranodal lymphoma. IF so where is/was yours located. Mine is in my neck.

Comments

  • miss maggie
    miss maggie Member Posts: 929
    #2
    Extranodal Lymphoma
    Dear Coupe35,

    That's me. Extranodal lymphoma is the sub type. Mine was the small bowel. My small bowel
    perforated, and was resected in Sept 2009. The perforation was caused by NHL.

    When were you DX? And what brought you to the doctor?

    I hope this helps. Maggie
  • onlytoday
    onlytoday Member Posts: 609 Member
    #3
    Extranodal marginal zone non-hodgkins lymhoma
    Hi,

    I was dx with extranodal marginal zone nhl in May 2010. It was originally in my groin lymph nodes. Now it's in my neck and stomach as well.

    Have you had treatment yet? I had four rounds of Rituximab in September 2010.

    I wish you all the best.

    Donna
  • peteh15
    peteh15 Member Posts: 2
    #4
    onlytoday said:

    Extranodal marginal zone non-hodgkins lymhoma
    Hi,

    I was dx with extranodal marginal zone nhl in May 2010. It was originally in my groin lymph nodes. Now it's in my neck and stomach as well.

    Have you had treatment yet? I had four rounds of Rituximab in September 2010.

    I wish you all the best.

    Donna

    NHL WIDESPREAD
    Hi, I was finally diagnosed in March 2010,my Small Lymphocytic Lymphoma, Stage 4B, had spread to all nodes,plus bone marrow and spleen, had Six rounds of Oral Chemo at Home, 3 Days of Fludarabine 70mg, and Cyclophosphamide 450mg daily, month off, 6 cycles finished in September 2010,Spleen has returned to normal size, if they treat you in time, the outcome like myself is great,Rituximab is not funded by our Government in NZ.
    Apart from small % of cancer left, Few colds coughs,and now waiting for 20% confirmation
    of Immune-mediated thrombocytopenia purpura, which I could have done without as I have to live on Prednisone, which helps to keep my platelet count above 10000, Im doing really fine.
    Good Luck, remember to wake up and say to yourself, what am I going to do today, everyday is precious.
    Take Care.
    Thoughts are with you, Pete in NZ
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
    peteh15 said:

    NHL WIDESPREAD
    Hi, I was finally diagnosed in March 2010,my Small Lymphocytic Lymphoma, Stage 4B, had spread to all nodes,plus bone marrow and spleen, had Six rounds of Oral Chemo at Home, 3 Days of Fludarabine 70mg, and Cyclophosphamide 450mg daily, month off, 6 cycles finished in September 2010,Spleen has returned to normal size, if they treat you in time, the outcome like myself is great,Rituximab is not funded by our Government in NZ.
    Apart from small % of cancer left, Few colds coughs,and now waiting for 20% confirmation
    of Immune-mediated thrombocytopenia purpura, which I could have done without as I have to live on Prednisone, which helps to keep my platelet count above 10000, Im doing really fine.
    Good Luck, remember to wake up and say to yourself, what am I going to do today, everyday is precious.
    Take Care.
    Thoughts are with you, Pete in NZ

    How right you are
    Way to go Pete, that is the right attitude. John
  • Coupe35
    Coupe35 Member Posts: 45
    #6
    onlytoday said:

    Extranodal marginal zone non-hodgkins lymhoma
    Hi,

    I was dx with extranodal marginal zone nhl in May 2010. It was originally in my groin lymph nodes. Now it's in my neck and stomach as well.

    Have you had treatment yet? I had four rounds of Rituximab in September 2010.

    I wish you all the best.

    Donna

    Neck
    Donna, when you said it was in your neck, do you mean the neck muscle and did it get enlarge. Right now it's watch and wait but i'm sure when I see my DR in 2 months I will be on some sort of treatment.

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