Genjen's Journey:

Survivor: Rare Cancers

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: about 33 years ago, Female, Age: 53

  1. 1
    • Genjen
    • Experience with Rare Cancers
    over 4 years ago
    Genjen's Avatar

    Diagnosed

    Oh No

    I was first diagnosed with Lupas and then I moved to Seattle and was rediagnosed with a rare blood disorder.

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  2. 2
    • Genjen
    • Experience with Rare Cancers
    over 4 years ago
    Genjen's Avatar

    It was to test Nupogen for those who aren't taking chemo but have low white blood counts.

    Clinical Trial

    My Doctor wanted to put me on Nupogen but He could only if I was on chemo. My body was attacking the white blood cells and He knew the Nupogen would give me alot of white blood cells to give me a chance to not get an infection (which is what killed those with my type of blood disorder) so he got a clinical trial going to show that this drug is good for anyone with an autoimmune disorder, and not just for those under going chemo treatments.

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  3. 3
    • Genjen
    • Experience with Rare Cancers
    over 4 years ago
    Genjen's Avatar

    Pain

    Side Effects

    On the trial I was found to be taking the real drug and it caused alot of bone pain and extreme fatigue until they found the right level. but I still struggle with bone pain and fatigue just not as strong.

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  4. 4
    • Genjen
    • Experience with Rare Cancers
    over 4 years ago
    Genjen's Avatar

    There is no cure for what I have so on going treatment as needed.

    Other Care

    Because there is no cure I am under constant care of a cancer doctor because of my constant low white blood count which causes me to get infections all the time. It is progressive so as I age I have more frequent infections and other complications until I succumb to an infection that the Dr's can't cure.

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