wvgal68's Journey with Uterine Leiomyosarcoma

Survivor: Endometrial (Uterine) Cancer > Uterine Leiomyosarcoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 9 years ago, Female, Age: 47, Stage Recurrent

  1. 1
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 4 years ago
    wvgal68's Avatar

    Surgery

    Procedure or Surgery

    My initial hysterectomy took twice as long as expected, and resulted in my diagnosis. My doctor did warn me there was a very slight chance that my problem may have been cancer, but then informed me rather nonchalantly, and never did give me a name for my cancer.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  2. 2
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Gemzar, gembiticine . Once a week for 30 minutes 3 weeks, and then a week off. One whole year of chemo

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 4 years ago
    wvgal68's Avatar

    Remission

    Celebration

    After continual shrinkage, had no evidence of disease for 9 months

    0 Comments
  4. 4
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 4 years ago
    wvgal68's Avatar

    Surgery

    Procedure or Surgery

    A centimeter tumor showed up in my lung. I had a thoracotomy to remove.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  5. 5
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 4 years ago
    wvgal68's Avatar

    Remission

    Celebration

    No evidence of disease following surgery. Decided not to follow up with chemo, since adjuvent chemo has not been proven to help with progression free or overall survival rates

    0 Comments
  6. 6
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 4 years ago
    wvgal68's Avatar

    Cancer is back/Recurred

    Oh No

    Pelvic tumor...missed in previous scan.

    0 Comments
  7. 7
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 4 years ago
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    Changed Caring Oncologist

    Decision Point

    The oncologist that I had started my journey with, firstly, did not believe that my tumor was operable. I found a doctor that would operate. My oncologist was not happy for me. He just wanted to make me comfortable. I needed a doctor that would fight with me, so changed doctors, changed cancer centers.

    0 Comments
  8. 8
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 4 years ago
    wvgal68's Avatar

    Surgery

    Procedure or Surgery

    Surgery once again was twice as long as expected. Had to have catheter for 3 weeks, followed by stents for 3 more.Doctor did feel he removed all of cancer. Scans showed it had grown back

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  9. 9
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 4 years ago
    wvgal68's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Had another year of chemo. Started out with Doxil, which did not work. Then changed to Ifosfamide. Horrible, horrible cancer. For the first time since diagnosis, felt like I was a cancer patient. Horrible nausea and fatigue. Lost my hair. Had 5 rounds, then switched to Gemzar for the remainder of the year.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  10. 10
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 4 years ago
    wvgal68's Avatar

    Finished treatment

    Celebration

    Tentatively No Evidence of Disease. Spot in lung has changed, but still may be scar tissue. Change in "density" of fatty mass in chest, but once again, doctors feel is nothing important. We shall see in October.

    0 Comments
  11. 11
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 3 years ago
    wvgal68's Avatar

    Surgery

    Procedure or Surgery

    Had surgery to remove 4 tumors from pelvis. Ended up with both a colostomy and urostomy. Also have horrible neuropathy, mostly in my right foot. I had over a month when I laid on my couch in pain crying. My neurotin is at a dose now that my pain is controlled, my foot just gets tired after walking.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  12. 12
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 3 years ago
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    External radiation

    Radiation

    Radiostatic surgery to remove remainder of tumor not removed during surgery because of vascular nature. Very quick and painless, just slight change in bowels for about a week.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  13. 13
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    almost 3 years ago
    wvgal68's Avatar

    Cancer is back/Recurred

    Oh No

    Jan 2014-multiple bilateral tumors in lungs, sub-centimeter

    0 Comments
  14. 14
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    almost 3 years ago
    wvgal68's Avatar

    anti-angiogenisis protocol

    Drug or Chemo Therapy

    Decided to do anti-angiogensis protocol because I did not want to start chemo-was offered Votrient

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  15. 15
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    almost 3 years ago
    wvgal68's Avatar

    Cancer is back/Recurred

    Oh No

    Increased number and sizes in tumors

    0 Comments
  16. 16
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    almost 3 years ago
    wvgal68's Avatar

    Other Care

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

    0 Comments
  17. 17
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    almost 3 years ago
    wvgal68's Avatar

    Dr. Appointment

    Decision Point

    Read me the riot act for some of the components in the protocol. Told me to stop them NOW, which I did.

    1 Comment
  18. 18
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    almost 3 years ago
    wvgal68's Avatar

    Cancer is shrinking

    Celebration

    No reason...just had shrinkage!

    2 Comments
  19. 19
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 1 year ago
    wvgal68's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Had 4 failed chemos in a year, trial aldoxirubincin, was sick for 18 of the 21 day cycle. Scans showed growth. Votrient. High blood pressure, headaches. Temodar. I think that one was mild. Havelin. Prolonged QT, which is a pause in the heartbeat, fatigue. All with growth.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  20. 20
    • wvgal68
    • Experience with Uterine Leiomyosarcoma
    over 1 year ago
    wvgal68's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Clinical trial of Yondelis. Horribly sick though they said most people handle it well. Lowered dosage. Approved by the FDA. Now having treatments actually at home, having less side effects. Now at a tolerable level.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments