Kaylia's Journey with Primary Mediastinal B-Cell Lymphoma

Survivor: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Diffuse Large B-Cell Lymphoma > Primary Mediastinal B-Cell Lymphoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 3 years ago, Female, Age: 44, Stage II

  1. 1
    • Kaylia
    • Experience with Primary Mediastinal B-C...
    29 days ago
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    Problem with doctor

    Oh No

    5 GP appointments spread over 3 months and told I had an allergy, and (most shockingly) NOT to go back to GP for at least a month!!! Left GP practice and found a new GP!

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  2. 2
    • Kaylia
    • Experience with Primary Mediastinal B-C...
    29 days ago
    Kaylia's Avatar

    Just Diagnosed

    Oh No

    Didn't make it long enough for tests new GP had arranged and presented as an emergency at A&E. A batch load of scans and tests brought the diagnosis of Non Hodgkin's Lymphoma. This was actually more of a relief than an "Oh No", as I was finally getting some answers.

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  3. 3
    • Kaylia
    • Experience with Primary Mediastinal B-C...
    29 days ago
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    Pericardical Drain

    Procedure or Surgery

    I was actually considered 'critical' (although was not aware of this until after) due to severe pericardial effusion. I had a very painful procedure to place a drain into the pericardium, but from there on I began to feel so much better. I spent 3 weeks in hospital.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    • Kaylia
    • Experience with Primary Mediastinal B-C...
    29 days ago
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    Implant chemotherapy port

    Procedure or Surgery

    I had a Hickman Line inserted about a week before my second chemo (the first as an outpatient, and the first of a different type as my NHL had been more clearly classified by the lab). This was the first of 2 Hickman Lines - the first one split while I was in hospital for neutropena, and I developed an infection at the site 2 weeks before my final chemo had been scheduled. I ended up with a PICC line for my final chemo.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  5. 5
    • Kaylia
    • Experience with Primary Mediastinal B-C...
    29 days ago
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    External radiation

    Radiation

    After chemo I had a PET scan which showed a very small area of lymphoma remaining. This meant 15 sessions of radiotherapy. The worst part of this treatment was the fatigue from travelling to the hospital every week day.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
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  6. 6
    • Kaylia
    • Experience with Primary Mediastinal B-C...
    29 days ago
    Kaylia's Avatar

    Remission

    Celebration

    In August 2016 I was given the news I had wished for - no evidence of disease, I was in remission!!!!

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  7. 7
    • Kaylia
    • Experience with Primary Mediastinal B-C...
    29 days ago
    Kaylia's Avatar

    Worsening of pre-existing conditions: Chronic Fatigue Syndrome / M.E. & Fibromyalgia

    Side Effects

    Both conditions have significantly worsened. The Fibromyalgia became worse during treatment and remains worse almost 3 years on. The M.E. has also become worse and is less stable. I continue to have more frequent flare ups with less time of feeling 'well' in between.

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