JamesMom's Journey with Adrenal Cortical Cancer (Adrenal Cort...

Caregiver: Adrenal Cortical Cancer (Adrenal Cortex Carcinoma)

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Male, Age: 15

  1. 1
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    about 5 years ago
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    Misdiagnosed

    Oh No

    At three years old diagnosed with McCune Albright syndrome. Unfortunately the precocious puberty was due to the adrenal tumor instead. Genetic testing after ACC diagnosis found 80 Percent likelihood that there is no McCune Albright syndrome. If test had been done in 2005, we would have looked for the tumor.

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  2. 2
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    about 5 years ago
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    Misdiagnosed

    Oh No

    Pain in back in 2010 - we asked for xrays. They xrayed him and said there was nothing found. Recent review of same xray and you can clearly see huge tumor but no metastatic spread at that time. If they'd found the tumor then, which you could see, it would not have metatastized.

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  3. 3
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    about 5 years ago
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    Cancer has spread/Metastasized

    Oh No

    Cancer spread to lungs with large cancer burden from nodules in lungs.

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  4. 4
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    about 5 years ago
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    Surgery

    Procedure or Surgery

    James had a 12 cm tumor removed along with his adrenal glad and kidney.

    Went as Expected: Strongly Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Cisplatin, Etopicide, Doxyrubicin, 10 rounds - plus daily mitotane

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    about 5 years ago
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    Chemo brain

    Side Effects

    Fuuuuuuzzzzzzyyyyy. Hard to do math. Hard to write name. Hard to read.

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  7. 7
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    about 5 years ago
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    Birthday

    Celebration

    James turned 10 in May!!!

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  8. 8
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    about 5 years ago
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    Cancer is shrinking

    Celebration

    Nodules continue to shrink. We forge ahead.

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  9. 9
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    about 5 years ago
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    Fertility

    Loss

    It is unlikely James will ever have children. I try not to think about it too much because I want to give all my love to him here today but I know some day when he is older, he will feel this loss.

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  10. 10
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    about 5 years ago
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    Breakthrough

    Celebration

    James' blood serum mitotane levels pass the theraputic dose of 14 ug/L and are now at 25 ug/L. This is like a brahms quartet lulling us to peaceful bliss.

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  11. 11
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    almost 5 years ago
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    Chemo brain

    Side Effects

    Confirmed that James' mitotane levels are too high and causing toxicity. 24.9 after last check; should be between 14 and 20. Will work with doctors to try to get a better handle on this.

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  12. 12
    • JamesMom
    • Experience with Adrenal Cortical Canc...
    almost 5 years ago
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    Make-A-Wish Trip!

    Celebration

    Going on Make-a-Wish trip this November. James is very excited and we are looking forward to having fun as a family.

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