blueemom's Journey with Leiomyosarcoma

Survivor: Endometrial (Uterine) Cancer > Leiomyosarcoma

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: over 13 years ago, Female, Age: 50, Stage IV

  1. 1
    • blueemom
    • Experience with Leiomyosarcoma
    about 5 years ago
    blueemom's Avatar

    I had trouble with knee. I kept falling down.

    Oh No

    In February of 2004 I slipped outside a popular restaurant on the supposedly nonslip coating on the concrete, my right knee immediately blew up to twice its size. I then fell down on the ramp of a portable scraping the knee on the metal grated portion of the ramp. The grated portion not only scraped my knee but burnt my knee. It left the skin on top of the scab that then got infected. I started getting stabbing pains in the knee. I went to the dr and got and antibiotic for the infection which was almost to the bone. I then asked for a referral for a orthopedic doctor to find out what was wrong with my knee.

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  2. 2
    • blueemom
    • Experience with Leiomyosarcoma
    about 5 years ago
    blueemom's Avatar

    MRI

    Procedure or Surgery

    The orthopedic dr ordered an MRI to find out why the knee was not working like it was supposed to. They found a cyst wrapped around the patella tendon. In looking at the MRI the cyst did not look like there was anything to worry about. The decision was made not to do a biopsy because they were going to take it out anyway. Surgery was scheduled after a Busch Gardens Teacher's Workshop.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • blueemom
    • Experience with Leiomyosarcoma
    about 5 years ago
    blueemom's Avatar

    Surgery

    Procedure or Surgery

    Dr. Mike took the cyst out and told my husband that it didn't look good. Dr. Mike has been my family's dr for many years and he was really upset that he did not make me do a needle biopsy before the surgery to find out what the cyst was compose of.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • blueemom
    • Experience with Leiomyosarcoma
    about 5 years ago
    blueemom's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    They placed a dual port in but only one port ever worked no matter what they did to it. It took a while to get used to them accessing the port but after a while I got used to it. I live in WPB but had to have my procedures done in Miami, Florida.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  5. 5
    • blueemom
    • Experience with Leiomyosarcoma
    about 5 years ago
    blueemom's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I had my first round of chemotherapy Adriamycin at Jackson Memorial.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    • blueemom
    • Experience with Leiomyosarcoma
    about 5 years ago
    blueemom's Avatar

    femoral artery chemo administration

    Procedure or Surgery

    they went through the femoral artery to deliver chemo directly to the site. During the procedure the cathedure moved and some of the chemo leaked into my abdomen and solidified my fat. I now have a what we affectionatly call my turtle - it is a section of belly fat that is hard.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  7. 7
    • blueemom
    • Experience with Leiomyosarcoma
    about 5 years ago
    blueemom's Avatar

    Fatigue (tiredness)

    Side Effects

    I did a lot of sleeping between my rounds of femoral chemo. I also experienced low blood counts, confusion, depression, lost my hair, hot flashes, dry mouth, mouth sores and changes in taste. I also had to travel back and forth to Miami to have blood work done and it was really hard because it was hot and 50 miles one way.

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  8. 8
    • blueemom
    • Experience with Leiomyosarcoma
    about 5 years ago
    blueemom's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Second round of Ariamycin or Red Devil. This round was much worse than the first. Vomited fruit punch all over a nurse from chest to toes when she woke me up.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  9. 9
    • blueemom
    • Experience with Leiomyosarcoma
    about 5 years ago
    blueemom's Avatar

    Hospitalization

    Other Care

    Was admitted to Cedar's Hospital in Miami due to counts being to low, dehydration and sores in mouth.

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  10. 10
    • blueemom
    • Experience with Leiomyosarcoma
    about 5 years ago
    blueemom's Avatar

    Surgery

    Procedure or Surgery

    Had surgery to remove all tissue and bone that touched the mass. They moved muscle to cover up the knee area. The calf muscle was disconnected from the back of the ankle and brought up and wrapped it around the front of the knee. The scar runs from above the ankle to about 6 inches above the knee. Unfortuneatly, the surgery was done right before 2 major hurricanes and the staples did not get taken out for 6 weeks due to the roads being impassible.

    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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