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Need HOPE, options, perspectives from others on NHL

jlk24
jlk24 CSN Member Posts: 6
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi My brother was diagnosed with aggressive form of Large B-cell with CNS involvement in July 2004. Had standard CHOP (8 cycles)and 4 cylces of Methotrexate for brain involvement from July to Dec '04. Was declared in remission after 4 cycles of CHOP in Oct '04 but cancer relapsed in January '05. After 3 weeks of radiation, my brother was admitted to the hospital for a autogolous stem cell transplant (his own bone marrow) and has been out of the hospital for 4 weeks. Yesterday, we discovered "bits" of the disease in the spine. (We are at a loss as to why the transplant didn't work given all but 10 of his white cells were erradicated by chemo) I'm very interested in others stories and potential experimental treatments that may be used now that standard treatments have been exhausted (i.e clinical trials, mini-transplants, new drugs etc) I'm looking to get as much info and perspective as possible....please reply with any info or perspective from your experiences.
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  • califdeb
    califdeb CSN Member Posts: 4
    #2
    Cant offer much only that i am being treated for same with chop and rituxin for 6 cycles every 3 weeks. just finished my 3rd and am told will wait to fourth to check progress. My visible lumps have disappeared so i am assuming the treatment is working.
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  • jcbeenthere
    jcbeenthere CSN Member Posts: 19
    #3
    not sure where you are located but Chicago Reese's hospital treated my brother with similar treatment in 1995. He saw a lympho specialist there and he is on maintenance treatment currently. best of luck
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  • Arabian__Lady
    Arabian__Lady CSN Member Posts: 2
    #4
    Hi ,my name is Tala ,i am 28 years lebanese ..i have the same case as your brother i advice u to read about macrobiotic and during this time let him avoid all dairy products ,all kinds of meat ,sugar ,mixed spices ,fats ,oils and if u want to know more about anything u can send me an email at .plamtree_76@hotmail.com
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