Roborjdz's Journey with Primary Mediastinal B-Cell Lymphoma

Patient: 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: almost 8 years ago, Male, Age: 73

  1. 1
    • Roborjdz
    • Experience with Primary Mediastinal B...
    about 7 years ago
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    Cancer has spread/Metastasized

    Oh No

    Back in November 2013 I was burping a lot. During the night I would often sit on the side of the bed holding my tummy. My GP started treating me for an upset stomach and perhaps gastric. After 3 weeks I felt no better so this time my GP arranged for tests including a CT scan which showed a large mass in the abdomen. Things then moved rapidly and before I had reached home after the CT scan the radiologist had rang my home telling my wife that I should immediately go back to the GP to hear the results. There was a large mass in my abdomen and "oh no" for the first time in my 65 years I would need to go to hospital for further analysis and treatment for what was most likely some form of cancer.

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  2. 2
    • Roborjdz
    • Experience with Primary Mediastinal B...
    about 7 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I was diagnosed with Burkitt's lymphoma. Because of its size and aggressive nature my Oncologist recommended 6 cycles the BFM (Berlin, Frankfurt Munchen) regime using methotrexate as the primary chemo drug. Each cycle involved 6 days in hospital followed by 9 visits to the cancer day clinic with a further 6 days to recover before starting the next round. Days 10 to 14 of each cycle were the worst. It is then that the mouth ulcers are reactivated and you are nutropenic. Three times my temperature went above 38 degrees C and I had to be admitted to hospital via the emergency centre. On one of these occasions I was put into coronary care as my heart started defribulating during a platelet transfusion.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • Roborjdz
    • Experience with Primary Mediastinal B...
    about 7 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    So far this year I have spent 65 days in hospital and over 80 visits to the cancer clinic involving receiving chemo and other drugs plus giving blood tests. Without the portacath implant I would look like a pin cushion. I can't recommend them highly enough.

    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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  4. 4
    • Roborjdz
    • Experience with Primary Mediastinal B...
    about 7 years ago
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    Allergic reaction

    Side Effects

    During my first BFM cycle using methotrexate I had a reaction to a white cell transfusion. Thereafter I was given premeds and suffered no more reactions.

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  5. 5
    • Roborjdz
    • Experience with Primary Mediastinal B...
    about 7 years ago
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    Lumbar puncture

    Procedure or Surgery

    I have had 7 lumbar punctures. I was given mydazolam as a premed. I felt no pain and had no side effects.

    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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  6. 6
    • Roborjdz
    • Experience with Primary Mediastinal B...
    about 7 years ago
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    Mouth sores

    Side Effects

    The worst side effect of methotrexate was mouth ulcers. After the first of my six cycles of BFM my mouth and throat was badly affected. I didn't fully appreciate what mouth hygiene really was. Since then I have significantly increased my cleaning routine to include low foaming toothpaste (bioteen) plus mouthwash plus rinses of soda bicarbonate and also salt water. The ulcers were less intense.

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  7. 7
    • Roborjdz
    • Experience with Primary Mediastinal B...
    about 7 years ago
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    Cancer is shrinking

    Celebration

    By 95%. After completing six cycles of BFM for my Burkitt's lymphoma PET scans in June, July and August confirmed it has shrunk by 95%. While I have started a maintenance regime involving mabthera every two months I commence five weeks of IMRT radiation on September 24th to remove the remaining 5%. Roll on November.

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  8. 8
    • Roborjdz
    • Experience with Primary Mediastinal B...
    almost 7 years ago
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    Finished treatment

    Celebration

    Finished radiation today after 25 cycles. Now the wait until the PET scan in February.

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  9. 9
    • Roborjdz
    • Experience with Primary Mediastinal B...
    almost 7 years ago
    Roborjdz's Avatar

    Remission

    Celebration

    After 1 year and 2 days, 6 rounds of methotrexate, 25 cycles of radiation, blood tests, transfusions, 80 days in hospital and 150 visits to the day the day cancer clinic my PET scan results came through today. My oncologist said the words we long to hear "the scan is clear - the lymphoma is GONE". Wow! Yippee! What a journey! Thanks be to GOD. Thanks to my career, cancer-concierge my wife Judy who with GOD on her side present a formidable team. Thanks to the what next community for your inspiration and support.

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