Cutaneous B-cell lymphoma

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pammyl
pammyl Member Posts: 2
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
If you or someone you know has cutaneous B-cell lymphoma, please contact me. This cancer is so rare, I have yet to meet anyone else who has it.

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  • phippsj
    phippsj Member Posts: 3
    #2
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    My brother was just diagnosed with it today. I personally do not know any thing about it. This is all new. Doctor said 4 cemo treatments sould do it. What have you found out about it. Or can you refer me to some information? Thanks PhippsJ
  • pammyl
    pammyl Member Posts: 2
    #3
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    phippsj said:

    My brother was just diagnosed with it today. I personally do not know any thing about it. This is all new. Doctor said 4 cemo treatments sould do it. What have you found out about it. Or can you refer me to some information? Thanks PhippsJ

    Hi,
    How is your brother doing? I am the one whose letter you responded to last October, and have had this lymphoma for many years. Could your brother e-mail me? Maybe we could learn something from each other. Thanks, Pam
  • brianjw
    brianjw Member Posts: 9
    #4
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    Hi. Hope you're OK. I've had cutaneous Large B-cell lymphoma for 3 years. Head and trunk variety. Have had a total of 7 lesions in 3 years either singly or two at a time. One was a multiple scalp thing. All were treated with ionizing radiation and melted away within 2-3 days. Incredible. But, they keep coming. My doctors want me to do R-CHOP now. Fighting to stay on easy to handle radiation. Next step is PET scan to make sure it hasn't gone systemic. Be happy to discuss with you or any other skin lymphies.
  • samd
    samd Member Posts: 8
    #5
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    Cutaneous b cell lymphoma
    I was just diagnosed a month ago. I start radiation tomorrow - 10days.

    I have a lump on my scalp that is follicle center cell variety (b-cell).

    I see you posted in 2002. I am just wondering if you have had any reoccurences.

    Sam in Florence, KY
  • samd
    samd Member Posts: 8
    #6
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    brianjw said:

    Hi. Hope you're OK. I've had cutaneous Large B-cell lymphoma for 3 years. Head and trunk variety. Have had a total of 7 lesions in 3 years either singly or two at a time. One was a multiple scalp thing. All were treated with ionizing radiation and melted away within 2-3 days. Incredible. But, they keep coming. My doctors want me to do R-CHOP now. Fighting to stay on easy to handle radiation. Next step is PET scan to make sure it hasn't gone systemic. Be happy to discuss with you or any other skin lymphies.

    cutaneous b cell lymphoma
    Hi,

    Just wondering how your doing with reoccurrences. I hope you are well.

    Sam in Florence, KY
  • Savo
    Savo Member Posts: 1
    #7
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    samd said:

    Cutaneous b cell lymphoma
    I was just diagnosed a month ago. I start radiation tomorrow - 10days.

    I have a lump on my scalp that is follicle center cell variety (b-cell).

    I see you posted in 2002. I am just wondering if you have had any reoccurences.

    Sam in Florence, KY

    b cell primary cutaneous lymphoma
    I had lumps on my scalp last year which were diagnosed as follicle center b cell primary cutaneous lymphoma :-) I had 15 radiotherapy sessions and the lumps are gone! Its so rare to talk with others that have been through this that I joined this forum just to post this. I have been advised that the lumps will probably come back some day so I am interested on how others are getting on.

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