bummer

nancy591
nancy591 Member Posts: 1,027 Member
edited March 2014 in Ovarian Cancer #1
Here I was kicking and screaming about not being able to get Carbo anymore due to an allergic reaction and I find out my ca125 only dropped one point after my second infusion. BUMMER. I was hoping it would have made more of an impact than that. It had dropped 8 points after my first infusion. I just completed my first cycle of two infusions of Gemar alone alone. One more cycle of two infusions Gemzar alone then a PET/CT to determine what is next. Feeling really uncertain, nervous, depressed as to what is in store for me. When I started chemo again in January I thought for sure I would get another remission. If the PET next month shows any more growth we will move on to another chemo with Avastin.
«1

Comments

  • froggy1
    froggy1 Member Posts: 205
    #2
    Sorry
    'So sorry to hear your news.. I thought you were one of the ones that said the CA125 was not a reliable indicator(???) Maybe I have you confused with someone else.
    'Hoping your PET/CT gives you better progress results. You should take comfort in knowing you are being treated at the best possible place you can be. I'm sure they will do the very best for you.
    'Thinking of you and lamenting the pain this awful disease bestows upon us. Ginny
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #3
    Dear Nancy
    So sorry to hear this news....wait until the PET scan to really see what is going on...remember your CA-125 isn't a reliable indicator anymore. Also, ask your gyn/omc about any trials. I know that there is a new one at MSKCC with some drug that has "aurora" in it. My mother didn't qualify because she has high blood pressure...Avastin has had great results as well...keep us posted..
  • azgrandma
    azgrandma Member Posts: 609 Member
    #4
    Lisa13Q said:

    Dear Nancy
    So sorry to hear this news....wait until the PET scan to really see what is going on...remember your CA-125 isn't a reliable indicator anymore. Also, ask your gyn/omc about any trials. I know that there is a new one at MSKCC with some drug that has "aurora" in it. My mother didn't qualify because she has high blood pressure...Avastin has had great results as well...keep us posted..

    So sorry
    I am sorry to hear this
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #5
    Lisa13Q said:

    Dear Nancy
    So sorry to hear this news....wait until the PET scan to really see what is going on...remember your CA-125 isn't a reliable indicator anymore. Also, ask your gyn/omc about any trials. I know that there is a new one at MSKCC with some drug that has "aurora" in it. My mother didn't qualify because she has high blood pressure...Avastin has had great results as well...keep us posted..

    ca125
    Yes, the ca125 is not a reliable indicator for me because when I had a confirmed recurrence it was at a 10. The highest it has went since my recurrence is 32 on 4/29/10 while on Doxil. I was then switched to Gemzar/carbo. It is now down to 19 but only dropped one point after my 2nd infusion of Carbo.

    Thanks for the encouraging words. I do have an appointment with Dr. S in NYC on Aug. 18th, after my PET/CT. I will be wanting to discuss my options. I do check the trial page at MSKCC but I haven't really seen anything I qualify for. I've even looked outside MSKCC for clinical trials but I am not ready to make the jump. I am hoping a trial for me will open there. If the Avastin does not work and there is not a trial for me at MSKCC I will start to look elsewhere.
  • froggy1
    froggy1 Member Posts: 205
    #6
    nancy591 said:

    ca125
    Yes, the ca125 is not a reliable indicator for me because when I had a confirmed recurrence it was at a 10. The highest it has went since my recurrence is 32 on 4/29/10 while on Doxil. I was then switched to Gemzar/carbo. It is now down to 19 but only dropped one point after my 2nd infusion of Carbo.

    Thanks for the encouraging words. I do have an appointment with Dr. S in NYC on Aug. 18th, after my PET/CT. I will be wanting to discuss my options. I do check the trial page at MSKCC but I haven't really seen anything I qualify for. I've even looked outside MSKCC for clinical trials but I am not ready to make the jump. I am hoping a trial for me will open there. If the Avastin does not work and there is not a trial for me at MSKCC I will start to look elsewhere.

    CA125
    Nancy, your post brings up an interesting point. Where do "we" fit in when it comes to a normal CA125? Some would say if youy CA125 is 19, that it's within the normal range. BUT, I was led to believe that "our" baselines are unique and the ratio of upward movement(like it doubling) is what is important.(????)
    If your CA125 is 19, isn't that a good thing? 'Will be interesting in the responses.. Ginny
  • LPack
    LPack Member Posts: 645
    #7
    froggy1 said:

    CA125
    Nancy, your post brings up an interesting point. Where do "we" fit in when it comes to a normal CA125? Some would say if youy CA125 is 19, that it's within the normal range. BUT, I was led to believe that "our" baselines are unique and the ratio of upward movement(like it doubling) is what is important.(????)
    If your CA125 is 19, isn't that a good thing? 'Will be interesting in the responses.. Ginny

    Normal
    In an earlier post I had mentioned what is "our" normal as most of us probably had never had a CA125 until we had ovarian cancer.

    Because I am BRCA positive both my sister and daughter had their CA125 taken. My sister's is 17 and my daughter's is 4 (that would be their norm as neither have had cancer).

    We know of course other things could make the CA 125 go up, but I believe we could all say that 17 is just as normal as 4 after all they are both within the "lower than 35 range".

    I would take either one!!!

    Love,
    Libby
  • msfanciful
    msfanciful Member Posts: 559
    #8
    Hello Nancy,
    I'm sorry to
    Hello Nancy,

    I'm sorry to hear of the latest test results.

    I have come to learn in this battle of ours, this is always going to be a roller-coaster ride until that final day of our lives.

    I know that ca-125 numbers aren't reliable, however; in the back of my mind those numbers always make my heart jump and then I have to push that fear back in the recesses of my mind.

    This is just a set-back until you find the "poison" (as my oncologist puts it), that will work for YOUR body. (I know it sounds crazy, but it's the truth).

    In the meantime stay beautiful and strong.

    Sharon
  • Unknown
    Unknown
    #9
    msfanciful said:

    Hello Nancy,
    I'm sorry to
    Hello Nancy,

    I'm sorry to hear of the latest test results.

    I have come to learn in this battle of ours, this is always going to be a roller-coaster ride until that final day of our lives.

    I know that ca-125 numbers aren't reliable, however; in the back of my mind those numbers always make my heart jump and then I have to push that fear back in the recesses of my mind.

    This is just a set-back until you find the "poison" (as my oncologist puts it), that will work for YOUR body. (I know it sounds crazy, but it's the truth).

    In the meantime stay beautiful and strong.

    Sharon

    This comment has been removed by the Moderator
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #10
    nancy591 said:

    ca125
    Yes, the ca125 is not a reliable indicator for me because when I had a confirmed recurrence it was at a 10. The highest it has went since my recurrence is 32 on 4/29/10 while on Doxil. I was then switched to Gemzar/carbo. It is now down to 19 but only dropped one point after my 2nd infusion of Carbo.

    Thanks for the encouraging words. I do have an appointment with Dr. S in NYC on Aug. 18th, after my PET/CT. I will be wanting to discuss my options. I do check the trial page at MSKCC but I haven't really seen anything I qualify for. I've even looked outside MSKCC for clinical trials but I am not ready to make the jump. I am hoping a trial for me will open there. If the Avastin does not work and there is not a trial for me at MSKCC I will start to look elsewhere.

    Dear Nancy
    I had my ovarectomy performed by Dr. Bobbie Gostout at Mayo. here in MN. She told me, at that time, she had a colleague on her staff who created recipes for each person individually. She really respected this woman because of her individual approach. Dr. Gostout is head of Mayos gynecological cancer area..you may want to call her and ask..let me know if you want me to call her first..
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #11
    I guess I am confused about
    I guess I am confused about the importance of the CA 125 numbers, since it's not a good indicator for you. Are you/your doctor just looking for a general downward trend, rather than a specific range of numbers?

    At any rate, I'm confident you will find a treatment plan that works for you. You have the advantage of being in a great cancer treatment center, plus your own medical knowledge makes you a very strong advocate for yourself.

    Carlene
  • South Jersey
    South Jersey Member Posts: 89
    #12
    Thinking of you
    Thinking of you and praying for good results with your PET/CT.
  • beth1465
    beth1465 Member Posts: 63 Member
    #13
    Praying for you...
    The power of prayer is great, and I am continuing to pray for you. Stay strong!

    Beth
  • leesag
    leesag Member Posts: 621 Member
    #14
    Dear Nancy,
    Dearest Nancy,

    I find myself thinking very often about the words your son said, "Jesus Listens." When I am feeling my worst, I think of his words, and for whatever reason, I feel better. I know when he asked you about that, he was questioning why you weren't "cured," but I do think his faith in God and healing is worth holding on to. I am adding my prayers to his that your scans show no advancement but instead show improvement and shrinking tumors.

    I should add, that I'm not a particularly overtly religious person, but your son's words touched me, and I believe that there is a great deal of inspiration to be found in the faith of a child.

    Many, many hugs and happy thoughts and prayers heading your way, hon!
    Leesa
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #15
    Hissy_Fitz said:

    I guess I am confused about
    I guess I am confused about the importance of the CA 125 numbers, since it's not a good indicator for you. Are you/your doctor just looking for a general downward trend, rather than a specific range of numbers?

    At any rate, I'm confident you will find a treatment plan that works for you. You have the advantage of being in a great cancer treatment center, plus your own medical knowledge makes you a very strong advocate for yourself.

    Carlene

    ca125
    Looking for a downward trend, of course. It was I who was upset over the 1 point drop. I was just hoping it would show big drops. I realize it is not reliable but I would have liked to see the drop anyway. That way I'd have a pretty good idea it was working. I hate waiting for the PET/CT every 3 months. When I was initially diagnosed my ca125 was 720 every 3wks I'd see those numbers dropping and it was such a good feeling. I don't know when or why it became unreliable.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #16
    Lisa13Q said:

    Dear Nancy
    I had my ovarectomy performed by Dr. Bobbie Gostout at Mayo. here in MN. She told me, at that time, she had a colleague on her staff who created recipes for each person individually. She really respected this woman because of her individual approach. Dr. Gostout is head of Mayos gynecological cancer area..you may want to call her and ask..let me know if you want me to call her first..

    I'll email. you
    Is it ok to email you? Do you have facebook?
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #17
    thanks everyone
    I do appreciate all the support and kind words. I have to be strong, I have no choice. I will forge ahead even though I am scared. What alternative do we have? Hoping something will work.

    hugs to all!!!
  • LPack
    LPack Member Posts: 645
    #18
    nancy591 said:

    thanks everyone
    I do appreciate all the support and kind words. I have to be strong, I have no choice. I will forge ahead even though I am scared. What alternative do we have? Hoping something will work.

    hugs to all!!!

    YEP
    I resemble that remark! "hoping something will work"!

    Forging with you!
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #19
    LPack said:

    YEP
    I resemble that remark! "hoping something will work"!

    Forging with you!

    Dearest Nancy
    I am going to say an extra prayer for you tomorrow at church. I will be at MSKCC on the 11th of August and in NY that whole week for my mother who has her second infusion of the doxil..are you going to be anywhere near there...I will buy you a really healthy smoothie drink or something.
    Fear is horrible. I wish I knew how to alleviate yours, even if just for a few minutes. So I will also pray tonight for your fear to lighten and that you get some peace in the coming days.

    Fondly, Lisa
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #20
    Lisa13Q said:

    Dearest Nancy
    I am going to say an extra prayer for you tomorrow at church. I will be at MSKCC on the 11th of August and in NY that whole week for my mother who has her second infusion of the doxil..are you going to be anywhere near there...I will buy you a really healthy smoothie drink or something.
    Fear is horrible. I wish I knew how to alleviate yours, even if just for a few minutes. So I will also pray tonight for your fear to lighten and that you get some peace in the coming days.

    Fondly, Lisa

    NYC
    I have an appt. in NYC August 18th at 3:30p on 53rd st. I did request to get in sooner if an earlier date became available. Will you be in NYC on the 18th? Does your Mom live in NYC. I'd hate to have you make a special drive in.
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #21
    nancy591 said:

    NYC
    I have an appt. in NYC August 18th at 3:30p on 53rd st. I did request to get in sooner if an earlier date became available. Will you be in NYC on the 18th? Does your Mom live in NYC. I'd hate to have you make a special drive in.

    Hi Nancy. I feel your pain.
    Hi Nancy. I feel your pain. My CA125 actually was climbing while I was on carbo/taxol which was so very discouraging and frightening. But I am so confident they will find the right combo that will work for you. As I've said many times, Avastin is showing marvelous results and dropped my CA125 34 points as of the last blood test. I'll bet any amount it will work for you too. There are so many impressive results with this new treatment. And remember, you are young and strong.
    I have nothing but the utmost admiration for you with 2 young kids. I really don't know how you do it. You are my hero.

    I always keep you in mind and wonder how you are doing. Just keep the faith!!!

    Kindly,
    Kate

Discussion Boards