DorieC's Journey with Sarcoma - Adult Soft Tissue Cancer

Patient: Sarcoma - Adult Soft Tissue Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Female, Age: 49, Stage IV

  1. 1
    • DorieC
    • Experience with Sarcoma - Adult Soft Ti...
    over 4 years ago
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    Diagnosed

    Oh No

    Diagnosed with hepatic epithelioid hemangioendothelioma. Told best course of treatment based on location of tumors at the time was liver transplant.

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  2. 2
    • DorieC
    • Experience with Sarcoma - Adult Soft Ti...
    over 4 years ago
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    12/6/11 Live donor liver transplant

    Procedure or Surgery

    Expected that the liver transplant would get everything however during transplant they found that the EHE had spread to lymph nodes. So, while recovery and regrowth of new liver went well, I had really hoped not to have to go through chemotherapy as was now planned. Had some setbacks but these had all been discussed; I had been informed by my doctors as to what could happen for the most part. I had to have a stent placed to open up a bile duct which I had been informed could happen. I also ended up with a diaphragmatic hernia which was not anticipated. When they removed my liver, they had to cut it off of my diaphragm which created a weakness in the muscle wall. This required and unanticipated surgery and was a bit difficult to deal with emotionally and physically to recover from. General recovery from a transplant is a slow process but it's doable and in my case, well worth the risks.

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • DorieC
    • Experience with Sarcoma - Adult Soft Ti...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    The chemotherapy caused fatigue, nausia, vomiting, hair loss and in my case, I was now duly immunosuppressed - meaning my immune system was not strong and I was highly susceptible for infections. This impacted my work life. I went on long term disability with an agreement that my employer accepted to allow me to continue to work from home a few hours a week. This was very supportive of me both in life and spiritually - just allowing me to continue to have positive focuses while on my healing journey.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • DorieC
    • Experience with Sarcoma - Adult Soft Ti...
    over 4 years ago
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    Cancer has spread/Metastasized

    Oh No

    Just as I was about to finish up with chemo round 8, found that the cancer was in the new liver and on my spleen. Decided needed to go to a new chemo - this one being a daily chemo.

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  5. 5
    • DorieC
    • Experience with Sarcoma - Adult Soft Ti...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Some people might think that a daily pill of chemotherapy would have less impact or less side effects than the iv kind however, not true in this case. This chemo made me extremely fatigued. I wanted and probably took a nap every single day. I had never felt so tired. This bothered me more than the initial chemotherapy. Not happy feeling that I was spending too much time in bed or on the couch napping.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • DorieC
    • Experience with Sarcoma - Adult Soft Ti...
    over 4 years ago
    DorieC's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Started Taxol this past Friday, 9/7. Was fine all day Saturday but began vomiting Saturday evening through end of day Sunday with horrible headache to go with it. Doctor said vomiting is not most common side effect for Taxol. Taxol is processed by the liver so this could mean it's really working or that the dosage is too high for my liver. We will find out with this next round of blood labs and chemotherapy. In meantime, I am receiving daily shots this week of Nuepogen, to boost my white blood cells and make me stronger.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  7. 7
    • DorieC
    • Experience with Sarcoma - Adult Soft Ti...
    over 4 years ago
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    this chemo not working

    Oh No

    Had tests this past Friday to find that the daily oral chemo is not working. Changed to a different chemo, Taxol, to treat this more like it is behaving - like an 'angiosarcoma'. Hoping that the Taxol does the trick! Having a good feeling about this!

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  8. 8
    • DorieC
    • Experience with Sarcoma - Adult Soft Ti...
    over 4 years ago
    DorieC's Avatar

    CAM (Complementary and Alternative Medicine)

    Other Care

    Also seeing my naturopath doctor - he is treating me with anti-angiogenesis remedies such as shark cartlidge and modified citris pectin along with other supplements meant to strengthen my immune system. I am seeing a therapist every other week - we work on a technique called EFT or 'tapping'. Getting myself to Tai Chi and Yoga classes to do some healthy breathing and energy work.

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