In a funk about CA-125

JoWin615
JoWin615 Member Posts: 150 Member
This is my first actual post, even though I log on here often. I am familiar with many of your stories. Here's mine in a nutshell:

I was diagnosed with lllC after a hysterectomy and debulking surgery on Feb. 1, 2011.
I had 6 treatments of carbo/taxol 3 weeks apart. I tolerated the chemo fairly well, with the usual discomforts I have seen described here. It was no picnic, but luckily I had a really good support system, and my partner has been a trooper.
A follow-up PET/CT scan in June showed NED.

Everyone congratulated me and said things like, "Wow, I bet you're glad that's over!" Yeah. The problem is, it's not over. It's never over. And then I wondered why I wasn't happier. Why am I not spending every moment of the day rejoicing in my good fortune, and getting on with my former life? I was still bald, still tired all the time, etc. I was put on Zoloft, which has really helped with the constant crying, and gradually my state of mind improved over the next few months.

Last week my routine CA-125 check showed a rise from 14 to 85. Yikes! Time to unload on the nice people of this board!

I have a PET/CT scheduled for Fri., Feb. 3. Until then, I would really appreciate any moral support, words of wisdom, common experiences, jokes - anything! I'll keep you posted.

Thanks, Jo

Comments

  • Barneygirl
    Barneygirl Member Posts: 90
    Hi Jo,
    I understand the funk

    Hi Jo,

    I understand the funk that comes with the CA-125. Such a roller coaster ride. Sometimes an increase can be related to an infection or inflammation going on in the body. I hope that is the case for you. If not, there are many other treatment options out there. When I recurred the first time, after 2 years in remission, I went into a 5 year remission.
    Try to stay positive and I hope your PET/CT is clear!!

    -Laura
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member

    Hi Jo,
    I understand the funk

    Hi Jo,

    I understand the funk that comes with the CA-125. Such a roller coaster ride. Sometimes an increase can be related to an infection or inflammation going on in the body. I hope that is the case for you. If not, there are many other treatment options out there. When I recurred the first time, after 2 years in remission, I went into a 5 year remission.
    Try to stay positive and I hope your PET/CT is clear!!

    -Laura

    Sending you good thoughts, Jo
    As you wait for your PET/CT scan on February 3rd and I know that the waiting is torture. I too hope you have a clear scan. If not, there are many other treatment options, as Laura said. In the meantime, we're pulling for you!

    Kelly
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    Jo
    Thinking of you and sending healing prayers...

    Glad your test is coming up so you can get some answers...Please keep us updated on your progress...

    Laurie
  • kayandok
    kayandok Member Posts: 1,202 Member
    Hi Jo,
    and welcome to the club none of us signed up for. It is good that you are having a PET/CT, it will tell the best story of what is going on inside. Hang in there, take it one day at a time, and try to not jump into the pannic lane (I know that is easier said than done).
    Hugs,
    kathleen
  • Mwee
    Mwee Member Posts: 1,338
    Hi Jo
    Great call getting on the zoloft... First, I'm glad you have a good support system and second is that you responded very well to the original carbo/taxol. We'll be waiting to hear how your PET/CT scan turns out and right here to help in any way we can.
    (((HUGS))) Maria
  • clamryn
    clamryn Member Posts: 508
    Dear Jo
    Jo, I know how you feel. It is so hard to explain to others why we all feel the way we do. Being NED you are always waiting, expecting and wondering when the other shoe will drop. It is hard to enjoy when we are given a reprieve. Then we go for our CA125 and boom, that can just change our outlook yet again. I will be thinking of you and praying for a good Pet/scan. Actually I always feel better when I get the results of the pet/scan. For me, it is the thing that tells me the truth and then I know what I am up against. If I get good news from it, I feel pretty good. If I get bad news, then I plan my next attack. We are all here for you.

    (((hugs))))
    Linda
  • kikz
    kikz Member Posts: 1,345 Member
    clamryn said:

    Dear Jo
    Jo, I know how you feel. It is so hard to explain to others why we all feel the way we do. Being NED you are always waiting, expecting and wondering when the other shoe will drop. It is hard to enjoy when we are given a reprieve. Then we go for our CA125 and boom, that can just change our outlook yet again. I will be thinking of you and praying for a good Pet/scan. Actually I always feel better when I get the results of the pet/scan. For me, it is the thing that tells me the truth and then I know what I am up against. If I get good news from it, I feel pretty good. If I get bad news, then I plan my next attack. We are all here for you.

    (((hugs))))
    Linda

    This disease has a way
    of taking over our lives. Like the others have said, it is frightening when the news is bad and yet it is hard to ever relax even when the news is good. I am sending good thoughts to you as you wait for your scan. I am glad you came to us for support, Jo.

    Karen
  • JoWin615
    JoWin615 Member Posts: 150 Member
    kikz said:

    This disease has a way
    of taking over our lives. Like the others have said, it is frightening when the news is bad and yet it is hard to ever relax even when the news is good. I am sending good thoughts to you as you wait for your scan. I am glad you came to us for support, Jo.

    Karen

    THANKS!
    Thank you all so very, very much for your kind and encouraging words. As everyone well knows, they help tremendously.

    Jo
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    Jo
    Thinking of you...How did the PET/CT Scan go??

    Sorry if I missed the update!

    Laurie