anyone else with alk-ana plastic large cell

alclmom
alclmom Member Posts: 7
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I would like
to hear of another case of this said to be rare form of non Hodgkin's

Comments

  • kathyh007
    kathyh007 Member Posts: 4
    #2
    NHL ALCL ALK-
    I have ALCL ALK- and PTCL NOS. Was diagnosed in March 2009. 6 treatments of CHOP and remission for 4 months. Relapsed in October 2009. Admitted to clinical trial of SGN-35 in December. I'm recovering well. Doctors have recommended an allogenic stem cell transplant once I'm in full remission, and I'm nearly there now. SGN-35 works so well that I'm going to check around to see if I can just rely on that and skip the stem cell transplant.

    Allo's have real problems with chronic GVHD (graft versus host disease), so I'm not sure I want to go through with it. I'm feeling so much better now, I don't want to go backwords permanently. I'm 60 years old, 59 years when I was first diagnosed.

    Hope this helps.
    Kathy007
  • ace122094
    ace122094 Member Posts: 1
    #3
    hello
    My son was diagnosed with anaplastic large cell non hodgkin lymphoma in June of 2006. We did 15 months of treatment at MD Anderson. He relapsed after 15 months... We did 7 more months of chemo, and then a transplant. He relapsed again exactly 6 months after transplant. This time we were allowed to participate in a study of SGN35. I can't sing the praises of this drug enough. We were all able to live a basically normal life during treatment. My son Logan just finished treatment last week, so now we are just praying that SGN35 was the miracle drug we have been praying for.

    I would also like to hear about anyone else who has been diagnosed with that type cancer or has tried that research drug.

    Amy

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