Buckjo's Journey with Rare Cancers

Survivor: Rare Cancers

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 6 years ago, Male, Age: 43

  1. 1
    • Buckjo
    • Experience with Rare Cancers
    over 4 years ago
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    What is Esthesioneuroblastoma?

    Oh No

    I could not find much documentation regarding Esthesioneuroblastoma. It was very frustrating trying to find out details, stories, and cure rates. I was also very concerned identifying the correct cancer center to treat this diagnosis. It is very important to find a well respected neuro surgeon and otolaryngologist. The duo needs to work well together and utilize the latest in surgical technologies.

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

    Surgery

    Procedure or Surgery

    Tumor resection took place on July 5th, 2011. The procedure lasted almost 12 hours and I was in the hospital for a week in recovery. I was back to work 2 weeks after the surgery though.

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • Buckjo
    • Experience with Rare Cancers
    over 4 years ago
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    External radiation

    Radiation

    I had 30 radiation treatments (5 days a week for 6 weeks). The last 2 weeks I did not feel like working and I really needed skin cream. Hair was lost (temporarily) in radiation pathway.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    • Buckjo
    • Experience with Rare Cancers
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Was administered cisplatin and etoposide on Wed, Thurs, Friday every other week. I always felt very sick over the weekend. Had 4 rounds of this treatment. Rounds were postponed 2 or 3 times for low white cell count. 4th round really knocked me down. Worst side effect was nausea, hair loss, and constipation (from anti-nausea meds). Name brand medication Emend really helped out. Lost 40lbs over the entire time period. Doctors recommended 6 rounds, but I opted to stop after 4. Hearing loss was recorded, still have ringing in my ears. Still stand by decision of stopping early.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • Buckjo
    • Experience with Rare Cancers
    over 4 years ago
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    Finished treatment

    Celebration

    A PET scan revealed lower levels that we were looking for. However, the best news was just from Otolaryngologist who could comment on the healing of the sinus area.

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