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Thread: UPDATE: T-Cell Lymphoma presentation

  1. #11
    Senior User
    Join Date
    Sep 2016
    Posts
    122
    An updated Presentation from 2015 can be found here: http://dream.presentme.com/audio2015/10032015LRFPro/. Alas, not a lot has changed from 2012, with the exception of checking for DUSP-22 chromosomal rearrangement if diagnosed with ALCL ALK-negative! http://www.bloodjournal.org/content/...o-checked=true
    Researcher, advocate, and caregiver to my son, age 24
    Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin, July, 2016
    Studies show young age (<40) is the great equalizer between ALK-negative and ALK-positive, with ALK neg at similar outcomes as positive when adjusting for age
    Third round of E-CHOP completed Sept 2016; PET scan NED Sept 2016!
    Sixth and final round of E-CHOP completed Nov 2016
    Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
    Continued to live alone and work two jobs through chemo!
    PET scan NED, Dec 2016!
    Second opinion at Seattle Cancer Care Alliance and Dr. Shustov: Active Observation, no auto stem cell at this time

  2. #12
    Senior User
    Join Date
    Sep 2016
    Posts
    122
    YAY! Victory! The importance of testing for DUSP22 in pathology for anyone diagnosed with ALCL ALK-Negative, can no longer be ignored! It's in the new 2017 NCCN clinical guidelines! If you are ALCL and ALK-negative, but also positive for DUSP-22, your outcome is similar to ALK-Positive, which is to say, quite positive! *NOTE: stem cell transplant is not recommended if you are DUSP22 ALK-negative!* My son was diagnosed in July of 2016 and this information was not on Kaiser's radar. I found it during my own research and requested the test. If you are being treated "in the community" as they say (and not at a NCI-designated Cancer Center see https://www.cancer.gov/research/nci-role/cancer-centers) your facility and oncologist or managed care insurance company, like Kaiser, may still not be clued in. ADVOCATE for yourself and request the test. If you get any pushback, tell them to look in the 2017 NCCN clinical guidelines.
    Researcher, advocate, and caregiver to my son, age 24
    Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin, July, 2016
    Studies show young age (<40) is the great equalizer between ALK-negative and ALK-positive, with ALK neg at similar outcomes as positive when adjusting for age
    Third round of E-CHOP completed Sept 2016; PET scan NED Sept 2016!
    Sixth and final round of E-CHOP completed Nov 2016
    Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
    Continued to live alone and work two jobs through chemo!
    PET scan NED, Dec 2016!
    Second opinion at Seattle Cancer Care Alliance and Dr. Shustov: Active Observation, no auto stem cell at this time

 

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