sister's last hope

sicksis
sicksis Member Posts: 2
edited March 2014 in Ovarian Cancer #1
please help!! my sister 42 was diagnosed with clear cell ovarian cancer stage 1 last november. she had hysterctomy and 6 rounds of chemo (carbo/taxol). A month later found fluid in abdomen and 3 weeks later tumors in lymph nodes. yale dx recomends surgery with "precision chemo" (for rest of her life). does anyone know of any clear cell specialist? or if any experimental drugs have worked on clear cell? she is deciding if she should do anything at all b/c the chemo did nothing before....please help...she has two small children and is ready to give up...

r/sicksis

Comments

  • groundeffect
    groundeffect Member Posts: 639 Member
    #2
    You might want to look into the Society of Gynecologic Oncologist's site (http://www.sgo.org/) for information about doctors. Have you contacted other hospitals (The Roswell Park Cancer Institute in Buffalo, NY, Johns Hopkins, Cleveland Clinic, Mayo, etc.)?

    I hope someone else will step up if they've had experience with clear cell. I know it's a tough one, and I hope you have luck finding a specialist.

    Do you know if her cancer was tested for chemo sensitivity? It should have determined if it would have responded to the carbo/taxol combination.

    If she's having a really tough time, perhaps you could help her by calling the American Cancer Society and asking if they have someone who could talk to her.

    I know women who have tried a number of chemo treatments, some rough and some good, and I'm always struck by how willing they are to try another. Some of the sites I mentioned have links for trials, but I think you're right on the money looking for a specialist first.
  • sicksis
    sicksis Member Posts: 2
    #3
    groundeffect said:

    You might want to look into the Society of Gynecologic Oncologist's site (http://www.sgo.org/) for information about doctors. Have you contacted other hospitals (The Roswell Park Cancer Institute in Buffalo, NY, Johns Hopkins, Cleveland Clinic, Mayo, etc.)?

    I hope someone else will step up if they've had experience with clear cell. I know it's a tough one, and I hope you have luck finding a specialist.

    Do you know if her cancer was tested for chemo sensitivity? It should have determined if it would have responded to the carbo/taxol combination.

    If she's having a really tough time, perhaps you could help her by calling the American Cancer Society and asking if they have someone who could talk to her.

    I know women who have tried a number of chemo treatments, some rough and some good, and I'm always struck by how willing they are to try another. Some of the sites I mentioned have links for trials, but I think you're right on the money looking for a specialist first.

    thank you for response..she is going to dana farber in boston for second opinion...as far as chemo sensitivity..is that normal practice? b/c it was never done when she had her hysterectomy - they just said that protocal was to do 6 rounds of carbo/taxol...should we have questioned that based on it being clear cell???
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #4
    So sorry to hear about your sister. You may want to call the 800 given through this site and they may be able to help.

    Take Care Bonnie

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