Non-Hodgkins T-Cell Lymphoblastic Lymphoma

carolinagirl811

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!

 

po18guy

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

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

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

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

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.