Met with my gyn/onc last nite

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antcat
antcat Member Posts: 270
in Ovarian Cancer #1
Saw my gyn/onc last nite to review surgery & latest CT scan. He was completely saddened by my continued growth with OC. We discussed surgery, and he did tell me he would be willing to do it if I want it, but recommended against it. He said there are numerous tumors (small) on the bowel) and didn't want to risk surgery, because he didn't know if I could survive it. He said I lost weight since I saw him in last November but I told him, I am eating, just can't gain back weight. In one respect, I think it's great, as for my height I should have never been as high as I was. But, I'm trying to make light of this situation. My family is extremely upset and I think I'm holding up pretty good, as I'm on an anxiety pill. I saw the oncologist today and we're going to try another oral pill, called Altretamine or Oral Hexalen. This one is strictly for people who have refractory or recurrent ovarian cancer, so we'll see. I'll probably try and see how this works out, I can always go back to carbo (I haven't been on that for 2 years) if this doesn't work, but I think that will be it.

Anyway just wanted to let you all know.

Thanks

Comments

  • kikz
    kikz Member Posts: 1,345 Member
    #2
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    So sorry
    you didn't get better news but am so humbled by your strength and sense of humor. It sounds like there are still options for you and I pray that you find success in one of them. You are in my thoughts and prayers.

    Karen
  • carolenk
    carolenk Member Posts: 907 Member
    #3
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    kikz said:

    So sorry
    you didn't get better news but am so humbled by your strength and sense of humor. It sounds like there are still options for you and I pray that you find success in one of them. You are in my thoughts and prayers.

    Karen

    If you Google Hexalen, you
    If you Google Hexalen, you might find the postings on the inspire discussion board. One woman took Hexalen about 10 years ago & had a long remission afterwards. I think the info on Wikipedia mentioned that pyridoxine (vitamin B6) helped prevent neuropathy. The dose would be 50mg/day.

    This could do the trick for you. Please let us know how it goes for you--I might be on it eventually, too.
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #4
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    I am so sorry I will be
    I am so sorry I will be praying for you and your fight. You sound like a fighter thou so I think you can make it. Keep the faith.

    Anne
  • clamryn
    clamryn Member Posts: 508
    #5
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    Dear Antcat
    I am so sorry to hear this news. But I am so happy with your attitude. I think that means so much. Before I started writing this response, I prayed for you. I am praying that the pill or whatever they decide will help you.

    Lot of hugs being sent to you.
    Linda
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #6
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    clamryn said:

    Dear Antcat
    I am so sorry to hear this news. But I am so happy with your attitude. I think that means so much. Before I started writing this response, I prayed for you. I am praying that the pill or whatever they decide will help you.

    Lot of hugs being sent to you.
    Linda

    Praying for you, Antcat
    And hoping that the new oral pill works for you.

    Kelly
  • kayandok
    kayandok Member Posts: 1,202 Member
    #7
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    Hexalen
    I know a couple people on this board that did use it a for awhile with success. Good to know that you can bring out th big guns (carbo) if it doesn't.
    Hugs,
    katheen
  • jbeans888
    jbeans888 Member Posts: 313
    #8
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    That is pretty heavy. I will
    That is pretty heavy. I will keep you in my prayers. I am glad you are being strong and trying different things. This disease sucks.
  • azgrandma
    azgrandma Member Posts: 609 Member
    #9
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    jbeans888 said:

    That is pretty heavy. I will
    That is pretty heavy. I will keep you in my prayers. I am glad you are being strong and trying different things. This disease sucks.

    second opinion
    can you get a second opinion hon?
    I am praying
  • eward
    eward Member Posts: 210
    #10
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    sorry
    Sorry to hear this but keep fighting. Get a second opinion if you feel your doc isn't doing enough. I know people with tumors that are not operable but they are kept under control with chemo and/or pill forms of chemo.
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #11
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    Sorry to hear about your
    Sorry to hear about your review. Will be praying for you to help you find some answers. As others have said, maybe a second opinion?

    Sending you comforting thoughts.

    Kathy
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #12
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    Thanks for the update
    I wish it were better news and I know you will keep fighting. So I will be thinking of you.
    Colleen
  • lulu1010
    lulu1010 Member Posts: 367
    #13
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    Cafewoman53 said:

    Thanks for the update
    I wish it were better news and I know you will keep fighting. So I will be thinking of you.
    Colleen

    So sorry for the findings
    But very glad you have some good options. I really hope this works for you. Will keep you in my prayers. Hugs...
  • mopar
    mopar Member Posts: 1,972 Member
    #14
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    I ALSO RECOMMEND A SECOND OPINION
    I think it would be a good idea, and certainly can't hurt. Sending lots of prayers and hugs to to antact. You're stronger than you think.

    Monika
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #15
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    Antcat
    Sending prayers and thoughts of hope...

    Hoping the new treatment can turn this around and get you back into remission..

    Hang in and we are here for you to lean on :)

    Laurie
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #16
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    I find myself humbled by the
    I find myself humbled by the strength of the group. It takes a lot to subject ourselves to the treatments. Your post takes my breath away at your strength. I will be praying, praying, and praying. Hugs...
  • carolenk
    carolenk Member Posts: 907 Member
    #17
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    Radioactive34 said:

    I find myself humbled by the
    I find myself humbled by the strength of the group. It takes a lot to subject ourselves to the treatments. Your post takes my breath away at your strength. I will be praying, praying, and praying. Hugs...

    I have to keep reminding
    I have to keep reminding myself: I am stronger than cancer & I am stronger than chemo. Sometimes, I forget.
  • garden gal
    garden gal Member Posts: 212 Member
    #18
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    carolenk said:

    I have to keep reminding
    I have to keep reminding myself: I am stronger than cancer & I am stronger than chemo. Sometimes, I forget.

    I like what carolenk
    says,you are strong. Just keep thinking positive. Kathy
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #19
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    garden gal said:

    I like what carolenk
    says,you are strong. Just keep thinking positive. Kathy

    Not making progress either
    Antcat: I was hoping that I could benefit from IPT chemo (lower dose chemo given while blood sugar is low) for my late stage ovarian cancer with peritoneal disease. I was taking treatments at a local office.

    After two months of weekly & twice weekly treatments with gemcitabine & carboplatin, my CT scan shows disease progression & new lesions. So I'm going to see the medical oncologist to get the full strength chemo & hope that does something for me. I also have lesions on my intestines so I am staying away from Avastin.

    I'm interested in hearing about your oral treatment. Please keep us updated.
  • antcat
    antcat Member Posts: 270
    #20
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    LaundryQueen said:

    Not making progress either
    Antcat: I was hoping that I could benefit from IPT chemo (lower dose chemo given while blood sugar is low) for my late stage ovarian cancer with peritoneal disease. I was taking treatments at a local office.

    After two months of weekly & twice weekly treatments with gemcitabine & carboplatin, my CT scan shows disease progression & new lesions. So I'm going to see the medical oncologist to get the full strength chemo & hope that does something for me. I also have lesions on my intestines so I am staying away from Avastin.

    I'm interested in hearing about your oral treatment. Please keep us updated.

    Dear LaundryQueen
    I was so sorry to hear about your progression, I know what you are going thru. I started on Oral Hexalen last Saturday. It's a pretty strong treatment, I take 2 pills 4x a day for a total of 8 a day. I called the oncologist earlier this week & told him, I'm very tired, but he said this is a new drug (not really new, it's one of the older ones) and he's going to monitor my counts while I'm on it. I'm on this pill for 14 days and then off for 14 days. If it affects my counts too much, then they'll cut me down to 6 pills a day. We'll see. Not much more I can say at this point. But, I have to laugh, last week my primary care doc took my CA 125 (before I started this new treatment), and it was a joke. In Dec. 2010, my CA 125 was 26.6, and last week it went down to 15. My question was "how could this be possible when I was told my disease progressed." Go figure that CA 125 test.
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #21
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    antcat said:

    Dear LaundryQueen
    I was so sorry to hear about your progression, I know what you are going thru. I started on Oral Hexalen last Saturday. It's a pretty strong treatment, I take 2 pills 4x a day for a total of 8 a day. I called the oncologist earlier this week & told him, I'm very tired, but he said this is a new drug (not really new, it's one of the older ones) and he's going to monitor my counts while I'm on it. I'm on this pill for 14 days and then off for 14 days. If it affects my counts too much, then they'll cut me down to 6 pills a day. We'll see. Not much more I can say at this point. But, I have to laugh, last week my primary care doc took my CA 125 (before I started this new treatment), and it was a joke. In Dec. 2010, my CA 125 was 26.6, and last week it went down to 15. My question was "how could this be possible when I was told my disease progressed." Go figure that CA 125 test.

    maybe it is working
    if your counts came down!!!!!! Your tx may keep the tumors stable.Get plenty of rest and keep yourself hydrated....val

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