Hope

Deb17
Deb17 Member Posts: 14
in Uterine/Endometrial Cancer #1

i was diagnosed with Stage IVb about a year ago. I had a complete hysterectomy and a month later I started 18 weekly rounds of taxil/carbo.  In August I was declared in remission, my CA-125 was 7.2.  Three months later the cancer is back.  Last week I started doxil and in a few weeks they’ll add avastin.  I went to the University of Chicago last week to a specialist there and her opinion was that I had a poor prognosis and there may be no effective therapy.  Please has anyone gone through this?  I’m becoming so depresse.  Thank you.

Comments

  • Soup52
    Soup52 Member Posts: 908 Member
    #2
    What about clinical trials .

    What about clinical trials . One of my friends has reoccurring fallopian cancer and is seeing a doc in Chicago and is doing a clinical trial.

  • saltycandy13
    saltycandy13 Member Posts: 167 Member
    edited February 2018 #3
    hope is the last to die

    Never give up hope.  I don't know where you live but Sloan Kettering Hospital saved 2 of my husband's aunts.  They are excellent.  I, myself, have gone to Cleveland Clinic, not for cancer, but for Graves' Disease and they are real bull dogs there.  They get to the bottom of everything.  

    Also, The Mayo Clinic in Minnesota.  I went there for my brain tumor years ago.  I consider them the best!

    God Bless!

    Karen

  • evolo58
    evolo58 Member Posts: 293 Member
    #4
    First, where is the cancer

    First, where is the cancer recurring? An elevated CA 125 tells only part of the story, and is not 100% accurate. Have you had any other tests to determine what's going on?

    Second, if your doctor isn't ready to fight for you, seek a second opinion. You do not need defeatism on your doctor's part at this point. At the very most, you'll know if the first doctor is correct and if your current treatment is standard for your condition.

  • Deb17
    Deb17 Member Posts: 14
    #5
    Soup52 said:

    What about clinical trials .

    What about clinical trials . One of my friends has reoccurring fallopian cancer and is seeing a doc in Chicago and is doing a clinical trial.

    I’m not a candidate

    the specialist I saw in Chicago heads up the clinical trials and told me I was not a candidate for a trial.  I just keep hoping someone out here has had some success with something that might help.

    thand you for your response though.

  • Deb17
    Deb17 Member Posts: 14
    #6
    saltycandy13 said:

    hope is the last to die

    Never give up hope.  I don't know where you live but Sloan Kettering Hospital saved 2 of my husband's aunts.  They are excellent.  I, myself, have gone to Cleveland Clinic, not for cancer, but for Graves' Disease and they are real bull dogs there.  They get to the bottom of everything.  

    Also, The Mayo Clinic in Minnesota.  I went there for my brain tumor years ago.  I consider them the best!

    God Bless!

    Karen

    Thank you

    thsnk you, Karen for your suggestions.

  • Deb17
    Deb17 Member Posts: 14
    #7
    evolo58 said:

    First, where is the cancer

    First, where is the cancer recurring? An elevated CA 125 tells only part of the story, and is not 100% accurate. Have you had any other tests to determine what's going on?

    Second, if your doctor isn't ready to fight for you, seek a second opinion. You do not need defeatism on your doctor's part at this point. At the very most, you'll know if the first doctor is correct and if your current treatment is standard for your condition.

    Uterine Cancer

    the cancer is reoccurring in the liquid below the stomach.  When I had my original surgery they did a complete hysterectomy and they also removed the omentum.  My current oncologist is following the current protocol for my cancer.  the second opinion I got was from the University of Chicago and she’s the dr. that gave me no hope.  I’ve tried cannabis oil but it doesn’t take my constant pain away.  Norco Helps but I don’t like to take it too often. ive had CT scans and PET scans and needle biopsies.

  • henhill
    henhill Member Posts: 123
    #8
    deb

    I think it would be fair to say that this is a bitterweet place where hope fluctuates.  Some folks fight and win, but others here fight and lose.  If anything, this group will listen and understand, offer  lots of moral support, and members have tons of information about your disease and control.  I am so sorry, I have a similar feeling lately, and I know how hard it is -hang in there.

  • Deb17
    Deb17 Member Posts: 14
    edited February 2018 #9
    henhill said:

    deb

    I think it would be fair to say that this is a bitterweet place where hope fluctuates.  Some folks fight and win, but others here fight and lose.  If anything, this group will listen and understand, offer  lots of moral support, and members have tons of information about your disease and control.  I am so sorry, I have a similar feeling lately, and I know how hard it is -hang in there.

    Thank you

    you’re right, it’s so difficult to have hope.  I wish I was stronge.

  • takingcontrol58
    takingcontrol58 Member Posts: 272 Member
    edited February 2018 #10
    Deb17

    Did you see my posting yesterday to your questions under
    "NED from Stage IV metastatic cancer."

    I provided some suggestions for you and have some other
    ideas.  I just sent you a private e-mail.

    I am beginning to believe that these oncologists assume the worst when
    your cancer returns.  But there are so many things you can do and tests
    that they most llikely did not give you (genomic testing and blood tests
    for example).

    I also recommend you get on metformin- it would be very helpful to 
    know your genomic mutations and health issues to see if you are one
    of the good candidates for metformin.  They know the mutations that
    metformin targets, yet they don't test endometrial cancer patients for
    these mutations.

    Takingcontrol58

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited February 2018 #11
    Deb17, Just wanted to also

    Deb17, Just wanted to also say how sorry I am you are going through this.  And, to address your wish - YOU ARE STRONG!  Going through cancer and treatments is hard.  But you did it and will continue to do it.  Please know you can come here and ask us anything.  We will always be here for you.

    Love and Hugs,

    Cindi

  • Deb17
    Deb17 Member Posts: 14
    #12
    Soup52 said:

    What about clinical trials .

    What about clinical trials . One of my friends has reoccurring fallopian cancer and is seeing a doc in Chicago and is doing a clinical trial.

    Not a candidate

    I was told that I am not a candidate for any clinical trials.  

  • Deb17
    Deb17 Member Posts: 14
    edited February 2018 #13
    evolo58 said:

    First, where is the cancer

    First, where is the cancer recurring? An elevated CA 125 tells only part of the story, and is not 100% accurate. Have you had any other tests to determine what's going on?

    Second, if your doctor isn't ready to fight for you, seek a second opinion. You do not need defeatism on your doctor's part at this point. At the very most, you'll know if the first doctor is correct and if your current treatment is standard for your condition.

    Location

    the cancer started in my uterus and spread to the omentum.  The cancer was also in the fluid below the omentum and that’s where it is again.   Actually I love my oncologis.  The negative doctor was the specialist I went to see to get a second opinion.  I’ve had a biopsy, Ct and PET scan and multiple CA-125 tests.  I’m just scared which I know all of the women on this site are.

  • Deb17
    Deb17 Member Posts: 14
    edited February 2018 #14
    henhill said:

    deb

    I think it would be fair to say that this is a bitterweet place where hope fluctuates.  Some folks fight and win, but others here fight and lose.  If anything, this group will listen and understand, offer  lots of moral support, and members have tons of information about your disease and control.  I am so sorry, I have a similar feeling lately, and I know how hard it is -hang in there.

    Thank you

    i hope the best to you too.

  • Deb17
    Deb17 Member Posts: 14
    edited February 2018 #15
    TeddyandBears_Mom said:

    Deb17, Just wanted to also

    Deb17, Just wanted to also say how sorry I am you are going through this.  And, to address your wish - YOU ARE STRONG!  Going through cancer and treatments is hard.  But you did it and will continue to do it.  Please know you can come here and ask us anything.  We will always be here for you.

    Love and Hugs,

    Cindi

    Thank you

    thank you so much Cyndi.  

  • saltycandy13
    saltycandy13 Member Posts: 167 Member
    edited February 2018 #16
    you don't think...

    you are strong, but you are stronger than you think.  I have felt so many times that I have crumbled with so many illnesses.  When I got Graves' I was ready to take the bridge, and when I got the phone call "Mrs. R, you have a brain tumor."  I had a full bottle of pills in the palm of my hand just assuming I was going to die.  Somehow I didn't take them.

    And now being told uterine cancer?  Well, that was the icing on the cake.  I have a small chance but nevertheless of recurrence and I am watching like an owl.  If it comes back, WE ARE GOING TO WAR.  That's the attitude we must have.

    Karen

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    edited February 2018 #17
    Deb17

    I am so sorry to hear of the prognosis. TakeControl58 makes an excellent point about testing and Metformin. I hope TakeControl58 in their private message to you can help you with other ideas. My heart goes out to you. SaltyCandy is amazing with what she has coped with and fought through and so are you! All of the people on this board are hoping that you find what you need to fight this awful disease. The University of Minnesota and Mayo Clinic are worth consulting. Keeping you in my prayers....((Hug))

    Lori

  • saltycandy13
    saltycandy13 Member Posts: 167 Member
    edited February 2018 #18
    thanks Lori

    don't ask me how I've done it.  I don't know myself.  I've just been thinking a lot about my father and how he battled thyroid cancer, a ruptured bowel which gave him a colostomy for 10 years before he died and how he would complain but always made it through Live to be 89

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