1. 4 months ago
    Guitarman's Avatar

    Discontinue cancer care visits.

    Decision Point

    After Dx with lewey body dementia, which I feel related to cancer. MD has seen handful of cases like mine, but rare. Experienced deb...

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    0 Comments
    • Luvs
    • Experience with Angioimmunoblastic T-Cell...
    about 1 year ago
    Luvs' Avatar

    Day one of Stem Cell Transplant

    Celebration

    I’m now 6 months Post Stem Cell still weekly blood tests and doctors appointment

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    0 Comments
    • Luvs
    • Experience with Angioimmunoblastic T-Cell...
    about 1 year ago
    Luvs' Avatar

    Diarrhea

    Side Effects

    Chemo brain, cramps in legs, fatigue,

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    0 Comments
    • Luvs
    • Experience with Angioimmunoblastic T-Cell...
    about 1 year ago
    Luvs' Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Chemo drugs-chop/ice/beam and Melphalan

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    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
    • Luvs
    • Experience with Angioimmunoblastic T-Cell...
    about 1 year ago
    Luvs' Avatar

    Surgery

    Procedure or Surgery

    2 lymph nodes removed for biopsy, Bone marrow biopsy

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    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    1 Comment
    • enougha
    • Experience with Angioimmunoblastic T-C...
    over 2 years ago
    enougha's Avatar

    I am in a clinical trial with two, non-chemo drugs. the cycle is three pills every morning for two weeks, and an infusion once a week for three weeks (overlapping). then 2 weeks off and start the cycle again. After just 2 cycles, my PET/CT scan showed

    Drug or Chemo Therapy

    The nausea has been worse than expected so my appetite and weight fluctuate. It takes a week after the last infusion for my taste a...

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    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
    • AIHR
    • Experience with Angioimmunoblastic T-Cell...
    almost 3 years ago
    AIHR's Avatar

    Cancer is shrinking

    Celebration

    At my 18 month check up the CT results showed one of the two lymph nodes being watched had shrunk significantly and the other is sta...

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    0 Comments
    • enougha
    • Experience with Angioimmunoblastic T-C...
    almost 3 years ago
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    almost 3 years ago
    po18guy's Avatar

    Cancer is back/Recurred

    Oh No

    Bone marrow biopsy reveals that MDS has recurred and is at the MRD (Minimum Residual Disease) level of 2.3% blast cells.

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    1 Comment
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    almost 3 years ago
    po18guy's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Consolidation chemotherapy to kill any remaining lymphoma cells.

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    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    almost 3 years ago
    po18guy's Avatar

    Moderate intensity haploidentical allogeneic stem cell transplant.

    Procedure or Surgery

    30% mortality within the first three years. Acute, then chronic graft-versus-host-disease.

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    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
    • po18guy
    • Experience with Angioimmunoblastic T-C...
    almost 3 years ago
    po18guy's Avatar

    External radiation

    Radiation

    Total body irradiation (TBI) to kill my failed marrow.

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    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
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