Need some uplifting

leesag
leesag Member Posts: 621 Member
edited March 2014 in Ovarian Cancer #1
I see lots of posts about the Ca-125, but mine are so high that I really need someone to say something to give me some positive thinking about them! My CA-125 was 9824 before surgery and three weeks after surgery it was only down to 7000 ;( I'm getting a little worried that I will never see the single digits, I need some positive thinking, hope and prayers would be most welcome!

I feel kind of guilty putting this on the board, but I'm a week away from my second chemo treatment and I'm feeling good, but I'm really scared about those darn numbers. I've seen the statistics, but I plan to an exception to them, just need a little help to keep my attitude going right now, I guess.

Thanks Ladies!

Hugs!

Leesa
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Comments

  • nancy591
    nancy591 Member Posts: 1,027 Member
    #2
    NUMBERS!
    It will come down. Most people respond to the carbo/taxol!! It is so hard not to get caught up in the numbers. Do you get your post treatment ca125 3 wks after treatment? You will be pleased when you see that number dropping.

    Hang in there!!!

    Oh, and WHY on earth do you feel guilty??!!!!!
  • marleyboo2
    marleyboo2 Member Posts: 59
    #3
    Thinking of you
    I just want to say that even tho I know that your hair does not look like that anymore I know just by the sheer fact that you even thought to do that you are an "out of the box" kind of thinker...soooo try just thinking what would be the BEST thing that can happen and go with it. Numbers can lie. Don't ever feel guilty for asking for a lift. I would have given anything for this board 5 yrs ago. I for one am praying for the girl who had the spikey hair. That is one more prayer going up today. I am praying that all the spare angels are coming your way today and giving you good guidance. {{{{hugs}}}}} to you today and everyday. And a prayer going skyward NOW!
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • rebasheesh
    rebasheesh Member Posts: 2
    #5
    unknown said:

    This comment has been removed by the Moderator

    ca 125
    Ca 125 numbers are as different as we are. My ca125 never went above normal. They removed a 3 pound ovarian tumor 6/08. You can get on the other side of this whole ordeal. You realy can. Prayers, you bet God is still on the job.
  • kathryn1
    kathryn1 Member Posts: 88 Member
    #6
    CA125
    Hi,
    Your numbers should come down with chemo, and everyones "normal" numbers are different.
    I'll be praying for you!
    Kathryn
  • cancer survivor x 4
    cancer survivor x 4 Member Posts: 177
    #7
    Uplifting
    Leesa, Leesa,
    be patient. Your number will start to fall. It takes some time. You have to get enough of that chemo in your body. Remember what I told you about the light at the end of the tunnel. You can't see the light yet, but you will. Love you, Paula
  • minky1225
    minky1225 Member Posts: 70
    #8
    cancer survivor x 4 said:

    Uplifting
    Leesa, Leesa,
    be patient. Your number will start to fall. It takes some time. You have to get enough of that chemo in your body. Remember what I told you about the light at the end of the tunnel. You can't see the light yet, but you will. Love you, Paula

    it will come down
    From all the extensive research that I've done, it all says it takes awhile for ca 125 to drop. You will get there.
  • minky1225
    minky1225 Member Posts: 70
    #9
    cancer survivor x 4 said:

    Uplifting
    Leesa, Leesa,
    be patient. Your number will start to fall. It takes some time. You have to get enough of that chemo in your body. Remember what I told you about the light at the end of the tunnel. You can't see the light yet, but you will. Love you, Paula

    it will come down
    From all the extensive research that I've done, it all says it takes awhile for ca 125 to drop. You will get there.
  • leesag
    leesag Member Posts: 621 Member
    #10
    nancy591 said:

    NUMBERS!
    It will come down. Most people respond to the carbo/taxol!! It is so hard not to get caught up in the numbers. Do you get your post treatment ca125 3 wks after treatment? You will be pleased when you see that number dropping.

    Hang in there!!!

    Oh, and WHY on earth do you feel guilty??!!!!!

    Thank you all so very much
    I can't tell you how much it helped to read your responses! Some days (today) it is hard to, as Paula says, see the light at the end of the tunnel; but thanks to all of you, I'm regaining my faith that God, my doctors and my body will work together to take care of this for me.

    I had a hunch that if I asked for help here, you would be there for me. Thank you all so very much!

    I'm still scared, but I'm not full of doubt anymore.

    And Nancy...I guess I feel guilty because there are so many women here with bigger issues than a stupid Ca-125 that's still high after surgery, and they're all so much braver than I'm being right now.

    Anyway, thank you all from my heart. I really needed an infusion of positive thinking!

    {HUGS}

    Leesa
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #11
    I understand completely. My
    I understand completely. My CA 125 was very high, too - 4000 pre-surgery and 2200 after. After my first chemo treatment, when I was expecting to see another big drop, it actually went UP 200 points. Talk about freaking out! But my doctor said not to worry....I was still healing from surgery (which elevates the number) and had just started chemo. He was right. It started dropping nicely after the second chemo.

    My doctor orders a CBC the day of chemo, then I go back 10 days later for another CBC and a CA 125. I am anxiously awaiting my next one, since the last number was a 1 point increase (from 12 to 13). Again, my doctor said not to worry about it, but I want to see it going DOWN, DOWN, DOWN.

    Remember, your CA 125 is NOT a measure of how "bad" your Cancer is. Nor is 9800 a record, by any means. I have "talked" (online) to women whose numbers were almost twice that. Your super-high CA 125 just means your body is especially sensitive to the protein secreted by the Cancer. That can be a good thing. Some women do not respond to it at all and for them, the only way to monitor for a recurrence is via CT or PET scans.

    I was overjoyed when my CA 125 dropped into the normal range, but then I fussed and fumed because I wanted it to go even lower - into single digits. When I go back for my next set of labs and it's a 6 (please, God), I'll probably be on here whining because it isn't a 3. You know how women are.......there's just no pleasing us.

    I promise to celebrate your next CA 125 victory with a large frozen Margarita. No need to thank me, really. I'm happy to do it.

    Carlene
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #12
    Hi Leesa
    I understand how you are feeling and if you are using maths and percentages to calculate how your CA 125 will respond - DON'T. Since when has your body done things as simple s that??!! MY CA 125 was 1119 at diagnosis and i was expecting a nice drop to 900 or something but I got 889. My second result was amazing as the chemo had been coursing around my body for 6 weeks by then so was really getting into action and the reading dfrom my second chemo was 291 (a drop of 598 which was a 50%) drop. So hang in there you will see some good results soon.

    Much love Tina xxxx
  • kayandok
    kayandok Member Posts: 1,202 Member
    #13
    Leesa,
    you have gotten some great info from the wonderful gals here, so I won't add anything more. Just want to send my love and support.

    Even though we tell ourselves, it is just a number, it is always a temptation for all of us, to focus on it.

    Hang in there, it will come down,
    kathleen:)
  • Mawty
    Mawty Member Posts: 133
    #14
    kayandok said:

    Leesa,
    you have gotten some great info from the wonderful gals here, so I won't add anything more. Just want to send my love and support.

    Even though we tell ourselves, it is just a number, it is always a temptation for all of us, to focus on it.

    Hang in there, it will come down,
    kathleen:)

    CA-125
    It's so true that CA-125 is so different for everyone. My highest when I was full of cancer was only 58. It only went down to 22. Now it's edging up from the low of 22 to 32 to 38 to 49. So I'm a little concerned about the inching up but almost feel silly because the numbers are so low.

    The doctors are going to take a scan to see if the Doxil is working or not, so I should know next month if it's working or not -- but I won't know before I take my cruise to Bermuda, and that's just the way I want it!

    I can understand how you want that number to go down, and I just bet is does as the chemo continues. Like others have said, most people do respond very well to the carbo/Taxol.

    I just love your mohawk picture.

    Marty
  • saundra
    saundra Member Posts: 1,370 Member
    #15
    Hang in there
    You don't know what your normal number was. None of us get the test unless cancer is suspected. My daughter now has one every year with her annual gyn. check up. Hers is 11. They should test you again after a couple of chemo doses and I will bet they are 50% lower. I had chemo before surgery (4 doses) and that dropped mine from 2999 to 35. After the surgery it only dropped to 30 and they got everything over 1/2 cm. "optimum results". Your history will be entirely different. Saundra
  • LPack
    LPack Member Posts: 645
    #16
    CA125
    Leesa!

    Yes, like all these wonderful women have said, best not to get caught up in the NUMBER. My daughter did get her CA125 count done because she is BRACA 2 positive and she is 4. My sister did too as she is positive and hers is 17. I never had that chance of course, but I am thankful that my family can find out if they so choose to have this CA125. Mine was 1799 before surgery, but I have seen one lady on here who had 14,000 before surgery and as others have said theirs was normal and they still had cancer.

    We are each so wonderfully made and none of us are made the same. So who is to really say what is normal and what is not for each of us? I don't know if I have ever been normal ☺!

    Your numbers will drop with treatment, but sometimes takes some several treatments and some one or two. It would be such a boring world if we were all the same, wouldn't it?

    Take care and love you,
    Libby ☺
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #17
    Mawty said:

    CA-125
    It's so true that CA-125 is so different for everyone. My highest when I was full of cancer was only 58. It only went down to 22. Now it's edging up from the low of 22 to 32 to 38 to 49. So I'm a little concerned about the inching up but almost feel silly because the numbers are so low.

    The doctors are going to take a scan to see if the Doxil is working or not, so I should know next month if it's working or not -- but I won't know before I take my cruise to Bermuda, and that's just the way I want it!

    I can understand how you want that number to go down, and I just bet is does as the chemo continues. Like others have said, most people do respond very well to the carbo/Taxol.

    I just love your mohawk picture.

    Marty

    Marty, you will love the
    Marty, you will love the cruise to Bermuda! We flew to Boston a few years ago, spent a great couple of days there (I'm a history buff), then sailed off to St George, where we docked for a few more days, then sailed home.

    Have you been there before?

    Carlene
  • catcan
    catcan Member Posts: 119
    #18
    rollercoaster
    Leesa

    Great advice from the ladies. I feel like I'm on a rollercoaster so my Dr. told me not to worry about the numbers that we will go off the CT scans. I went down but never lower than 154 now up again. I've decided to enjoy the ride and not worry about it. I figure my medical staff and God will take care of it. I really need to figure out how to get a picture on this site.

    Praying for you

    Cat
  • msfanciful
    msfanciful Member Posts: 559
    #19
    Hi Leesa,
    Yes we all tend to
    Hi Leesa,

    Yes we all tend to get wrapped in the ca-125 numbers...Just a few days ago I was down because mine had gone up but I still fantastics.

    These wonderful ladies helped me to get over that fear of "The Numbers" LOl!

    It is true that it takes usually about the second time of chemo when the numbers begin to plummet drastically. At least for me they did.

    So hang in there and also remember those ca-125 numbers will drive you crazy if you just focus on them all the time, so don't fret too much on those numbers.

    Hang in there my friend,

    Sharon
  • Unknown
    Unknown
    #20
    msfanciful said:

    Hi Leesa,
    Yes we all tend to
    Hi Leesa,

    Yes we all tend to get wrapped in the ca-125 numbers...Just a few days ago I was down because mine had gone up but I still fantastics.

    These wonderful ladies helped me to get over that fear of "The Numbers" LOl!

    It is true that it takes usually about the second time of chemo when the numbers begin to plummet drastically. At least for me they did.

    So hang in there and also remember those ca-125 numbers will drive you crazy if you just focus on them all the time, so don't fret too much on those numbers.

    Hang in there my friend,

    Sharon

    This comment has been removed by the Moderator
  • Mawty
    Mawty Member Posts: 133
    #21
    Hissy_Fitz said:

    Marty, you will love the
    Marty, you will love the cruise to Bermuda! We flew to Boston a few years ago, spent a great couple of days there (I'm a history buff), then sailed off to St George, where we docked for a few more days, then sailed home.

    Have you been there before?

    Carlene

    Bermuda
    Hi Carlene,

    Nope,I've never been to Bermuda. I'm really looking forward to it. We're going to leave from Manhattan. Two days at sea and three days in Bermuda and two days at sea back to Manhattan. I'm looking forward to the pink-sand beaches! I know it won't be that warm yet, but that's okay.

    I'm really looking forward to it!

    Marty

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