beadybarb's Journey with Nodular lymphocyte predominant Hodgki...

Patient: Hodgkin Disease > Nodular lymphocyte predominant Hodgkin disease

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: almost 5 years ago, Female, Age: 46

  1. 1
    • beadybarb
    • Experience with Nodular lymphocyte p...
    almost 5 years ago
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    Diagnosed

    Oh No

    So few people have this kind of Hodgkin's Lymphoma so I'm looking for experiences to try to figure out what this means. I was just diagnosed this week. Not sure what to think...

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  2. 2
    • beadybarb
    • Experience with Nodular lymphocyte p...
    almost 5 years ago
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    Staging PET/CT

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
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  3. 3
    • beadybarb
    • Experience with Nodular lymphocyte p...
    over 4 years ago
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    External radiation

    Radiation

    Be careful to mention pain and difficulty swallowing. My throat closed just after I finished my last treatment, and I could have had a pulmonary crisis if I hadn't gone to the emergency room when I did.

    Painless Experience: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • beadybarb
    • Experience with Nodular lymphocyte p...
    over 4 years ago
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    Finished treatment

    Celebration

    Now just waiting on the followup PET/CT to make sure it's all gone. The tumors in my neck are almost undetectable by touch.

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  5. 5
    • beadybarb
    • Experience with Nodular lymphocyte p...
    over 4 years ago
    beadybarb's Avatar

    Radiation and Candida Esophagitis

    Side Effects

    Hospitalized twice for esophagitis. My throat had swollen up so badly, that my airway was only 5mm on the CT scans they did at the hospital. A week or two later, I was hospitalized again for chest pains, which the hospital determined weren't cardiac but probably related to a raging thrush infection. I've also had hair loss, skin changes (redness, itchiness, darkening, and peeling), taste changes - 4 weeks after radiation therapy ended and I still don't have my taste buds back to normal, and hair loss. I've also noticed neck muscle stiffness.

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