• so4getful
    • Experience with Hemangioendothelioma
    almost 7 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    October 2012: Started Doxorubicin, 1 time a week, for 3 weeks, then rest 1 week, then 3 more weeks. On week 2 so far. Side effects M...

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    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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    • so4getful
    • Experience with Hemangioendothelioma
    almost 7 years ago
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    To Chemo or Not to Chemo, that is the Question...

    Decision Point

    September 2012: Fast Forward about 7 months. Scans are "mostly stable" however, they show significant thickening of the Pleural lin...

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    • so4getful
    • Experience with Hemangioendothelioma
    over 7 years ago
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    Decision Point

    EHE is a slow moving cancer. Even though I am symptomatic, other than the hemoptysis I'm not presenting as "sickly," and this episod...

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    • so4getful
    • Experience with Hemangioendothelioma
    over 7 years ago
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    Consultation

    Other Care

    Doctors here never heard of EHE. Through research I found a hospital with some experience with this type of sarcoma: The Dana-Farber...

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    • so4getful
    • Experience with Hemangioendothelioma
    over 7 years ago
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    Diagnosed

    Oh No

    Pathology comes back Epithelioid Hemangioendothelioma. Surgeon never heard of it, didn't even know it was cancer. I was told about i...

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    • so4getful
    • Experience with Hemangioendothelioma
    over 7 years ago
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    Surgery

    Procedure or Surgery

    Lung biopsy. Feb 2012. Went well. recovery was rougher than I expected. Great doctors at Cleveland Clinic in Weston FL. Super please...

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    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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    • so4getful
    • Experience with Hemangioendothelioma
    over 7 years ago
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    Decision Point

    December 2011; Hemoptysis now fairly aggressive for about 4 months straight; feeling winded after coughing/hemoptysis attacks. Not e...

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    • so4getful
    • Experience with Hemangioendothelioma
    over 7 years ago
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    Misdiagnosed

    Oh No

    2010, Diagnosed with "idiopathic pulmonary haemosiderosis." In essence, this means "bleeding in the lungs from an unknown cause." ...

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    • so4getful
    • Experience with Hemangioendothelioma
    over 7 years ago
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    Bronchoscopy

    Procedure or Surgery

    2008, 2009, and again in 2010 to find out reason for chronic hemoptysis.

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    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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    • so4getful
    • Experience with Hemangioendothelioma
    almost 7 years ago
    so4getful's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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