I need you ladies.

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Comments

  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #22
    You remind me of myself
    Would it help if you had the test in a month rather than in two ? If it is a lower number that would be great or if it is higher it would give you time to prepare for what might be ahead of you. To me the stress of waiting is worse than the news itself.
    Good luck no matter what you are strong and if you need to you can do whatever needs to be done, we are here for you!
    Colleen
  • antcat
    antcat Member Posts: 270
    #23
    CA 125
    Hi, please don't be scared, the CA 125 is not an accurate tumor marker test. I know that from experience because mine went down despite the latest CT scan showing tumor growth. My oncologist doesn't even want to do the test anymore, but just for the heck of it, I'm going to ask my primary care doc to run it since I haven't had it done in 3 months. But, I don't think it's too accurate of a test and you have to remain positive. I know it's hard and I know what you're going thru, everyone always worries it'll come back.

    Take care.
  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #24
    kikz said:

    I just heard from
    my oncologist and she is concerned because she feels my nadir is around 7-8. But she said it would be too early to see anything so I will have another CA 125 in two months and if it doesn't go back down or rises, she will order a petscan.

    I told her it will be a long two months and she said she understood.

    I will probably go nuts before then.

    Thanks again ladies, your words mean everything to me, because only you really understand.

    Karen

    waiting, what a pain
    The waiting game for us is always difficult. But, remember, there is other reasons for elevated CA125. Remember rest, fluids, relaxation, and good healthy food. Those are the things you have control over!!! Kim
  • clamryn
    clamryn Member Posts: 508
    #25
    Dear Karen
    I wished that I were there with you to give you a hug. You know, sometimes, I think we know too much. We all fear the CA125. I don't really believe in mine anymore. Mine has been in the normal range and then I get a scan and it shows progression. I even told my doctor that I don't put much faith in the CA125. But yet, we all want to know what the number is. I hate that it seems to control all of our lives in some way. Karen you hang in there. We all love you and you know that. I think you should ask your doctor to at least check it again in 1 month instead of waiting 2 months.

    Love you,
    Linda
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #26
    kikz said:

    Thank you, Connie
    My son thinks I get ahead of myself which I do so he gets a little frustrated with me. My mom who acts as if she is tough is really unable to deal with emotional situations. I, who tend to be very emotional have shown myself to have real strength. I think sometimes people are surprised by that because I am shy and usually don't speak out. I believe it is because I choose my battles.

    Funny you should mention it but I have yoga today as well. I was thinking of skipping it today. Once when I was going through a difficult time, I became very emotional at yoga and the tears flowed. I thought I might have to leave because I felt like I might start sobbing. I stayed and when I shared this with my teacher, she said you let go of a lot of stress. It's just that I pick up my cousin who was with me through my treatment and today I feel like as soon as I see her I will break down.

    Thank you again and I know that even if it is back it is not the end. I can fight again. It's just hard to deal with the possibility because if it is back that ends the hope that it would never come back.

    Thanks again for your words of support and love. It meant alot to wake up and read your message.

    Karen

    Hugs and lots of well
    Hugs and lots of well wishes.
  • carolenk
    carolenk Member Posts: 907 Member
    #27
    clamryn said:

    Dear Karen
    I wished that I were there with you to give you a hug. You know, sometimes, I think we know too much. We all fear the CA125. I don't really believe in mine anymore. Mine has been in the normal range and then I get a scan and it shows progression. I even told my doctor that I don't put much faith in the CA125. But yet, we all want to know what the number is. I hate that it seems to control all of our lives in some way. Karen you hang in there. We all love you and you know that. I think you should ask your doctor to at least check it again in 1 month instead of waiting 2 months.

    Love you,
    Linda

    Vacation in Lalaland
    Karen

    Maybe you can join your family in Lalaland for the next month--then go to www.directlabs.com where you can order your own CA-125 test for $68 (out of pocket). Ideally, your doctor would order it for you but I think two months is too much to ask someone to wait. I'm hoping for the best for you--you have a kind & gentle soul.
  • kikz
    kikz Member Posts: 1,345 Member
    #28
    carolenk said:

    Vacation in Lalaland
    Karen

    Maybe you can join your family in Lalaland for the next month--then go to www.directlabs.com where you can order your own CA-125 test for $68 (out of pocket). Ideally, your doctor would order it for you but I think two months is too much to ask someone to wait. I'm hoping for the best for you--you have a kind & gentle soul.

    Could you give me
    directions to Lalaland? A dear friend of mine asked me if I wanted to run away with her today. I know she is trying to get my mind off of things. We went to Half Moon Bay and it was gorgeous. We stopped along the way to watch some kite surfers. We ate lunch at a lovely restaurant right next to the ocean. I had a glass of wine which made me tipsy (don't drink much). Then we walked along a path past some quirky houses and some magnificent homes.

    It was a great day; I am blessed to have some terrific people in my life.

    I will have my CA 125 on 6/10/2012. After emailing my surgeon I understand that even if I have a recurrence there is really not a lot to do at this point. I think I finally understand what is meant by managing the disease. If it comes back it becomes a chronic illness much like diabetes or high blood pressure. Those diseases are managed because there is no cure. Unfortunately for us the treatment used to manage this disease is what ultimately is our downfall.

    I am hoping and praying that I am still in remission and until I know different I want to remain calm and happy. I have complete faith in my doctors and know they will do the best for me.

    Thank you all again. I cannot express what it means to have you all in my life.

    Karen
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #29
    kikz said:

    Could you give me
    directions to Lalaland? A dear friend of mine asked me if I wanted to run away with her today. I know she is trying to get my mind off of things. We went to Half Moon Bay and it was gorgeous. We stopped along the way to watch some kite surfers. We ate lunch at a lovely restaurant right next to the ocean. I had a glass of wine which made me tipsy (don't drink much). Then we walked along a path past some quirky houses and some magnificent homes.

    It was a great day; I am blessed to have some terrific people in my life.

    I will have my CA 125 on 6/10/2012. After emailing my surgeon I understand that even if I have a recurrence there is really not a lot to do at this point. I think I finally understand what is meant by managing the disease. If it comes back it becomes a chronic illness much like diabetes or high blood pressure. Those diseases are managed because there is no cure. Unfortunately for us the treatment used to manage this disease is what ultimately is our downfall.

    I am hoping and praying that I am still in remission and until I know different I want to remain calm and happy. I have complete faith in my doctors and know they will do the best for me.

    Thank you all again. I cannot express what it means to have you all in my life.

    Karen

    Living with the condition
    Understanding that recurrence is not always a slippery slope to hospice helped me deal with the possibility of recurrence...then the reality of recurrence.

    I tell my friends & family that it's possible to live with the disease and it's a balancing act not to die from the treatment. I read somewhere that 60% of people with cancer die of something else anyway--I'm not sure where OVCA fits into that statistic.

    Thanks for sharing your lovely outing with your friend with us. It does my heart good to know you have good days, too.
  • Mwee
    Mwee Member Posts: 1,338
    #30
    LaundryQueen said:

    Living with the condition
    Understanding that recurrence is not always a slippery slope to hospice helped me deal with the possibility of recurrence...then the reality of recurrence.

    I tell my friends & family that it's possible to live with the disease and it's a balancing act not to die from the treatment. I read somewhere that 60% of people with cancer die of something else anyway--I'm not sure where OVCA fits into that statistic.

    Thanks for sharing your lovely outing with your friend with us. It does my heart good to know you have good days, too.

    Living with the condition 2
    I recurred three years ago and am living with OVCA as a cronic disease. It's not easy, but it's worth it to me. My middle granddaughter is eight today... she was two when I was diagnosed... I wouldn't have missed this time with her for anything, so I'll continue to try to balance chemo treatments, fatique, etc. with b-day smiles and hugs!
    (((HUGS))) Maria
  • undertreatment2012
    undertreatment2012 Member Posts: 126
    #31
    this scares me
    I have been scared of recurrence since my first diagnosis and I am not even done with first round of chemo. I think it's because I am so intuitive. I said INTUITIVE not negative, which some people think. I knew I had cancer, I just knew it when they told me they saw something, I knew it would not be good and it wasn't. In fact one of the worst. As then, I know that it will come back. Not if but when. But my family goes along thinking life is a bowl of cherries and after treatment everything will go back to "normal". I am telling you guys, this is not depression or bumming out. It's a feeling I have inside since my surgery, something is still wrong. Going to the onc for a physical tomorrow. Lots to talk about. And I want another scan. I get sick of thinking about it. I don't know how some of you have gone through so much. Admirable, but I don't think I could do half of what some of you have. You all are the best.

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