Update Terry Ca-125 Is 28,000

ladyjogger31
ladyjogger31 Member Posts: 289
edited March 2014 in Ovarian Cancer #1
Well I got back from my vacation last Sunday with having to have 5 ¼ liters of ascites drained. Prior to vacation I had 18 treatments of radiation for a tumor on my vaginal cuff. My pet/ct scan was cancelled and I started chemo Thursday, topotecan/avastin. They couldn’t access my port, I had a scan and it’s cracked. I need a new one.
I had my ca 125 drawn and it was 28,000, which is the correct number. I’m devastated!!
I so upset to think I don’t know where the cancer is at because of them cancelling my scan. Has anyone ever had ascites drained the second time? Shouldn’t I have a scan to see where the cancer is at? How about the high ca 125, my oncologist didn’t seem concerned. Nine weeks ago I had a scan and the only thing that showed was the tumor on the vaginal cuff, now all of a sudden I must be loaded with cancer. How could this be? I’m so sorry for venting, I’m just so upset. I’m praying someone might give me some help.
Hugs and Prayers to all you Teal Warriors,
Terry

Comments

  • saundra
    saundra Member Posts: 1,370 Member
    #2
    Praying for you
    Dear Terry, that is not what I wanted to hear from you this morning. I have not had to have any fluid drained so can not help you there. Bummer about the cracked port too. I am using the one I got in Mar. 2007 still. It worked Thurs for my chemo (carboplatin). The high CA125 is troublesome but haven't yours always been pretty high. Your body may just produce a lot more of the antibodies than some of us.

    As far as the scan goes, just don't worry about it. It really doesn't matter. Focus on visualizing the chemo being drawn to all bad cells and doing a job on them no matter where they are.

    I have been practicing deep breathing....Inhale deep, hold to count of 10, and exhale. Repeat 10 times.
    I think it makes me feel better.

    Psalm 121 "I look to the mountains; where will my help come from? My help will come from the Lord, who made heaven and earth. He will not let you fall, your protector is always awake...The Lord will guard you; he is by your side to protect you... The Lord will protect you from all danger; he will keep you safe."

    (((HUGS and PRAYERS)))
    Saundra
  • LPack
    LPack Member Posts: 645
    #3
    Terry
    Terry,

    I believe devastated would be the correct word I would use, too. I have not had ascites before so I have no prior experience.

    Know I too will keep you before the Lord as your doctors focus on you and what you need to get your numbers, body, etc. back into order. Amazing our bodies!!! They can sure go through a lot. Though stressful on us and our family.

    Just remember God's great love for us. God is for You. He has even written your name on His hand. "I have written your name on my hand," he declares (Isa. 49:16).

    I think about that myself. For my name to be written on His hand He has to see it everyday, all the time!! How comforting to know that I am that important to Him! And so are you.

    In His Hand,
    Libby
  • veggiegal
    veggiegal Member Posts: 14
    #4
    LPack said:

    Terry
    Terry,

    I believe devastated would be the correct word I would use, too. I have not had ascites before so I have no prior experience.

    Know I too will keep you before the Lord as your doctors focus on you and what you need to get your numbers, body, etc. back into order. Amazing our bodies!!! They can sure go through a lot. Though stressful on us and our family.

    Just remember God's great love for us. God is for You. He has even written your name on His hand. "I have written your name on my hand," he declares (Isa. 49:16).

    I think about that myself. For my name to be written on His hand He has to see it everyday, all the time!! How comforting to know that I am that important to Him! And so are you.

    In His Hand,
    Libby

    I have had six liters of
    I have had six liters of ascites taken from my abdoman and I was so scared that it would return. My doctor started me on chemo the very next day because he said that the chemo would prevent the acites from building up again and it seemed to work. I'll keep you in my prayers
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #5
    prayers
    Dear Terry, So sorry to hear the high numbers, such a shock to the system. I have had lots and lots of fluid drained way back when and know once they start the treatments it will hold it back. As far as the numbers for ca125, I know for me when the microscopic cancer gets active it use to cause mine to jump like crazy and may not even show up much on ctscan. As Saundra said it could be partly that your body just makes a lot of these antibodies. Sending lots of prayers ♥ hugs. Love Ya Bonnie
  • mopar
    mopar Member Posts: 1,972 Member
    #6
    HUGS AND PRAYERS
    Dear Terry:

    I know how upsetting this is for you. But I hope the responses you've received so far have given you hope. Those dastardly numbers are so worrysome. Sending prayers for numbers to come down and for peace and strength for you.

    (((HUGS)))
    Monika
  • jane65
    jane65 Member Posts: 277
    #7
    Terry
    Hi Terry,
    I know it's a worrisome time for you,I wish I could hold your hand, and give you a hug right now.

    It must be hard to not think the worst, but there was no additional cancer, other than on the vaginal cuff, which you did have treated. The rest of the scan was clear, so I can't imagine a quick spread being possible.

    One step at a time my dear friend, and the first step is dealing with the port.
    I've heard a lot of good reports about the chemo drugs you're on, so I expect that the CA will be responding and start going down in the very near future!

    My prayers are with you, for a speedy return to good health.
    Love,
    Jane
  • groundeffect
    groundeffect Member Posts: 639 Member
    #8
    Focus on the immediate future
    Terry, you really need to keep in mind that the CA-125 test is far from perfect. You've gotten sound observations here, and I totally agree that you should focus on getting that cracked port taken care of, and then set another goal to focus on. When things start looking bad for me, I try to pinpoint a day when it should all be behind me, and look toward it. I also practice yoga breathing (pretty much as Saundra described her breathing execise), which helps calm me a lot.

    I hope you'll find the comfort and hope we wish for you!

    Sue
  • kayandok
    kayandok Member Posts: 1,202 Member
    #9
    Dear Terry,
    I'm so sorry you had to come back rom vaca to hear this. I don't have anything profound to add, as some of the vets have given you the best input, I think. I did want you to know I am sending my love and support.
    Praying for you today,
    Warm hugs,
    kathleen:)
  • jacyone
    jacyone Member Posts: 10
    #10
    Positive thoughts and prayers
    Hi Terry. I'm afraid I don't have much to offer in the way of experience or expertise being new to this journey myself, but I wanted to let you know that you've been in my thoughts since I first read your post earlier this week. I don't even know what to hope for except that the situation is not as dire as it first appeared and that your port replacement and any subsequent treatment is swift and effective! I just thought it might help you to know that there are those of us out here praying and pulling for you silently from the sidelines. *hugs*

    Love,
    Judy

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