Non-Hodgkins T-Cell Lymphoblastic Lymphoma

carolinagirl811
carolinagirl811 Member Posts: 15
in Lymphoma (Hodgkin and Non-Hodgkin) #1



Hi all,

I was diagnosed with Stage III pediatric T-Cell Lymphoblastic Lymphoma almost two years ago. I finish Maintenance in May. I went through induction, cosolidation, interim maintenance, delayed intensification, and now am in maintenance. Through induction, consolidation, and interim maintenance, I continued on the ALL protocol. During delayed intensification, I was diagnosed with avascular necrosis. My oncologists decided to stop my steroids. I underwent surgery for the AVN, but since it didn't show complete healing, I didn't get back on the steroids. I worry daily about relapse since I don't have steroids all through maintenance. Does anyone know of any studies or information about prognosis for people in my situation? I know there are always pros and cons to everything, but I worry about the risks associated with this. 

 

Thanks!

 




Comments

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited December 2016 #2
    Anything T-Cell is truly rare

    A couple of resources, but T-Cell malignancies are so rare that we seem to be individual cases more than a population. Were you considered for transplant? As to any existing data, you might make contact at the:

    T Cell Leukemia Lymphoma Foundation, as the founder is a research hematologist at Fred Hutchinson.

    The Lymphoma Research Foundation 

    The Leukemia and Lymphoma Society

  • carolinagirl811
    carolinagirl811 Member Posts: 15
    #3
    Thanks

    Thank you for your response. Yes I read on one of those resources that for every person with T-cell lymphoma there will be 10 with B-cell lymphoma. I haven't been considered for a transplant yet. I think my doctors are hoping to avoid it unless I do relapse. 

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited December 2016 #4
    No relapse, no problem

    Here is a link to a couple of presentations by two of the acknowleged experts in T-Cell Leukemias and Lymphomas. In the second, I believe that Dr. Pro specifically addresses T-ALL. As to steroids, you are most lieky better off without them. Yes, they do have a certain chemotherapeutic effect, but they suppress your immune system, making a relapse more likely. As always, it is a double-edged sword.

    https://www.cancerforums.net/threads/31117-UPDATE-T-Cell-Lymphoma-presentation?p=185344&viewfull=1#post185344

  • carolinagirl811
    carolinagirl811 Member Posts: 15
    edited December 2016 #5
    Why?

    Why would the protocol include them at all then? I know at least in people my age AVN isn't that uncommon. I would think that with the chance of bone death, they would just decide to hold them throughout treatment. 

     

    thanks! 

  • po18guy
    po18guy Member Posts: 1,505 Member
    #6
    Life comes first

    Saving one's life from an aggressive Leukemia or Lymphoma comes first. The steroids boost the body's metabolism so that it can fight the disease, and kill a certian percentage of the cancer cells, but have a downside that is apparently presumed to be acceptable. 

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