T-Cell CNS lymphoma diagnosis

Chambersm
Chambersm Member Posts: 7 *
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Male, age 58. Diagnosis is T-Cell CNS LYMPHOMA. Wondering if there is anyone else with the same diagnosis.

Comments

  • po18guy
    po18guy Member Posts: 1,518 Member
    #2

    Sorry to hear this. T-Cells are rare. CNS presentation is rare. However, if you are being seen at an NCI designated comprehensive cancer center, you have the best hope for a good outcome. Of particular importance is consulting with a nationally known T-Cell Lymphoma specialist. Find the nearest center here: https://www.cancer.gov/research/infrastructure/cancer-centers/find

    Does pathology identify the particular variant of T-Cell Lymphoma? There are 27-28 sub-types, and they behave and respond to therapy quite differently. I have had two systemic T-Cell Lymphomas with three relapses total.

  • Chambersm
    Chambersm Member Posts: 7 *
    #3
    https://csn.cancer.org/discussion/comment/1721238#Comment_1721238

    Thank you for responding.

    Yes his Oncologist is located in a NCI designated cancer center.

    He has finished cycle three of methotrexate based chemo. Unfortunately he had a seizure two days prior to the start of the third cycle, so a MRI was ordered. MRI indicated that the lesion has increased. Oncology team is reassessing treatment plan.

  • po18guy
    po18guy Member Posts: 1,518 Member
    #4

    Is there a clinical trial available? It is best to leave all options on the table. I would hope that doctor is consulting with the T-Cell consortium, a group of T-Cell specialists who communicate their knowledge and experience. Doctor should know of this, but if not, it is easy enough to locate.

  • Chambersm
    Chambersm Member Posts: 7 *
    #5

    Yes, they are brainstorming with counterparts. The two treatments that have been considered are WBRT and Cytarabine-Based Chemotherapy.

  • Chambersm
    Chambersm Member Posts: 7 *
    #6

    I did look at clinicaltrial.gov and didn't see anything in our area.

  • Chambersm
    Chambersm Member Posts: 7 *
    #7

    How long have you been getting care for your lymphoma

  • po18guy
    po18guy Member Posts: 1,518 Member
    edited February 23 #8

    From 2008 until 2015 until a stem cell transplant. I had Peripheral T-Cell Lymphoma NOS (unknown sub-type) as well as Angioimmunoblastic T-Cell Lymphoma and Myelodysplastic syndrome, a marrow cancer. In 2014-2015, I had all three blood cancers simultaneously. It required two years after the transplant to eradicate the marrow cancer. I have been in 4 clinical trials. If necessary, consider traveling to a clinical trial if need be. It might also be helpful to know that many T-Cell Lymphomas require several lines of treatment before they will fully respond.

    Mine was a hard case and I have received 21 chemotherapy drugs, four of them twice or more.

  • Chambersm
    Chambersm Member Posts: 7 *
    #9

    How do you work out clinical trials logistical and still try to have a meaningfull quality of life?

  • Chambersm
    Chambersm Member Posts: 7 *
    #10

    We are probably still trying to hold onto a vision of life that may no longer be possible.

  • po18guy
    po18guy Member Posts: 1,518 Member
    #11

    It is a life-changer. However, in retrospect, I would do it over if given the choice. I have experienced things, gone places and met people I never would have otherwise. Cancer awakened me. Life had been sifting through my hands like sand. Clinical trials vary in how simple or complicated they are. Some of my clinical trials were oral meds that I took at home. With CNS lymphoma, I am guessing that a combination of regimens will be needed. Having expended all reasonable lymphoma drugs, I was at the point where I chose to go the research route rather than transplant - but ended up with a transplant anyway. I did receive several drugs "off-label", in essence, drugs that were aimed at other cancers or lymphomas.

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