Head in the sand

ggggsister
ggggsister Member Posts: 38
edited March 2014 in Ovarian Cancer #1
Hi Everyone, It's been a while since I've been logged in. My sister went into remission in December so I've been praying/pretending that she is just fine, fine, fine from here on out. However...her CA-125 had been at 21 (after the all-time high of nearly 10,000 at diagnosis last April 18th). Her most recent CA-125 is at 28--still within the limits, but worrisome all the same. Her doctor said that he'd be lying if he wasn't worried too, but is not doing another blood test until the beginning of May. My questions to you are: Is it wise to wait that long? I know the blood tests are expensive, and I guess her insurance wouldn't cover another one before May...Would it be out of line for me to give my sister the money to have another test sooner? How would any of you feel if a relative gave you money to pay for a test that the doctor hasn't even requested?

Any help you can give me.

Thanks.

Gail

Comments

  • green50
    green50 Member Posts: 312
    #2
    MY CA125 over18000
    I have been as others on chemo off and on for almost 7 years. My count has not been low as far as below 4000 In over a year yet my tumors are small and in lymphnodes. CA is the protein that the tumors can give off and everyone is different. MIne gives off a lot of protein. If her CA125 is in the 20s I would assume it will be safe to wait until May. I am not a dr. but everyone is different but that is a low number and for 2 or 3 weeks of waiting she should be fine. If it were me I would defineately want a big break if mine was that low, but again I don't know how fast hers grew in the past or how big her tumors were. And other things can cause a higher count. I would safely say May is fine for the blood test, but go by the dr he knows her history. Mine was slow growing and only the size of the end of my finger except the one at my spleen which is two fingers and my count was still 18000. I am waiting after 3 rounds to see if mine went down. Others may tell you the same. Its no fun waiting for results. But as I had to make it a part of life. I hope and pray she is stablized with the next count and forever. For me I would say wait until May but again I dont know her history. I will be praying she stays stable and you have a piece of mind.
    Prayers and Hugs as Always
    Sandy
  • ggggsister
    ggggsister Member Posts: 38
    #3
    green50 said:

    MY CA125 over18000
    I have been as others on chemo off and on for almost 7 years. My count has not been low as far as below 4000 In over a year yet my tumors are small and in lymphnodes. CA is the protein that the tumors can give off and everyone is different. MIne gives off a lot of protein. If her CA125 is in the 20s I would assume it will be safe to wait until May. I am not a dr. but everyone is different but that is a low number and for 2 or 3 weeks of waiting she should be fine. If it were me I would defineately want a big break if mine was that low, but again I don't know how fast hers grew in the past or how big her tumors were. And other things can cause a higher count. I would safely say May is fine for the blood test, but go by the dr he knows her history. Mine was slow growing and only the size of the end of my finger except the one at my spleen which is two fingers and my count was still 18000. I am waiting after 3 rounds to see if mine went down. Others may tell you the same. Its no fun waiting for results. But as I had to make it a part of life. I hope and pray she is stablized with the next count and forever. For me I would say wait until May but again I dont know her history. I will be praying she stays stable and you have a piece of mind.
    Prayers and Hugs as Always
    Sandy

    Thank you, Sandy
    Thanks, Sandy, for your reply. Waiting is so hard. But that's what I'll do. I wish you happiness, peace and serenity.

    Gail
  • saundra
    saundra Member Posts: 1,370 Member
    #4
    May soon enough
    Mine has been at 50 for the last three months...another test tomorrow. This is Ok with my onc. because it is staying at this range for now which he calls "stable". The CT is not showing anything yet. I will have another one of those in May or June. The CA125 is just one of three test they consider...CT scan and physical exam are the others. I think there has to be a positive sign on at least two of these before they do anything except watch it for awhile. Don't worry, the next test could be lower. Lots of thing can cause a rise in the number (infection/inflamation) and even the labs make a mistake now and then. Saundra
  • kayandok
    kayandok Member Posts: 1,202 Member
    #5
    I agree
    Hi Gail, I agree with Sandy and Saundra. Once a month is the most that you really need to test, and some docs actually test every 2 or 3 months. In that month the count can fluctuate before it levels out. Most docs want to see it double up twice, and see something on a scan in order to call it a recurrence. Trying not to focus/think about the numbers is very difficult, especially if they are creeping up.

    My NED numbers are 5 or 7. So, when it began to creep up, I pretty much knew the recurrence was happening. But they would not do a scan until it doubled up twice. I get mine every month.

    Hang in there and live each day to the fullest! That is always my goal, although sometimes I just break down and have a little pity party for myself. Those are good too, as long as you close down the party when the tears run out and look up again.....

    Hope that helps,
    Warm hugs,
    Kathleen
  • kris43
    kris43 Member Posts: 275
    #6
    Your Sister
    Gail - it is so good to hear from you again. And your sister is doing well now? Besides the rise in numbers? My numbers have been below 10 for about 15 months and my doctor said she would probably wait until I got to 50 or even higher before they really started to investigate - they would just have me come in more often again. Everything is so hard - the numbers game, the waiting for results, twinges, pain, weight gain, fatigue.....it's never ending. So hang in there. May is just a couple of weeks away, and Saundra was right - the number can fluctuate for all sorts of reasons - even stress.

    Take good care! Send a hug for you both.

    Kris
  • groundeffect
    groundeffect Member Posts: 639 Member
    #7
    Hi Gail,
    You've gotten good
    Hi Gail,

    You've gotten good advice about the CA-125 already.

    I have been taking tamoxifen (anti-estrogen drug) for a while now, and a couple of women in my support group have been prescribed tamoxifen by their doctors. I'm just throwing that out as a thought for her. It has little in the way of side effects (hot flashes, dry fingernails for a while), and it took my CA-125 from 284 to 56 (where it's stayed for a few months now). One of my support group friends has a very low CA-125, the other high, and we all go to different doctors in different states, so there must be something to be said for taking it.

    If I hadn't had such a dramatic drop, I wouldn't even mention it.
  • JanQ
    JanQ Member Posts: 236
    #8
    advice
    I agree everyone has given great advice. My CA-125 in the past three months has gone from 240-177-211, so it can vary so much and there are so many things that can contribute to the varitation- virus, stress ect...I hope it doesn't continue to rise.
    God Bless and have a wonderful Easter! He is risen.
    Jan
  • Unknown
    Unknown
    #9
    This comment has been removed by the Moderator

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