Results of Pet/scan----not good

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clamryn
clamryn Member Posts: 508
edited February 2012 in Ovarian Cancer #1
Well my CA125, which showed a 2, must have been a fluke. My pet/scan shows progression. I am pretty much devastated. They are switching me now to topecan (sp?). I will have to do it every week. I just don't know what to think anymore. I wished that I knew what to do. Most of the time I am pretty positive but this kind of kicked me in the gut.
Please say a extra prayer for me.

Linda
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  • whiterose
    whiterose Member Posts: 89
    #2
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    Prayers for you. I hope
    Prayers for you. I hope your new regimen works.....
  • mom2greatkids
    mom2greatkids Member Posts: 528
    #3
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    Hi Linda,
    That has to be
    Hi Linda,

    That has to be discouraging. Now I will be cautious of my CA-125. It was 7.5 in December. Pet Scan and CT's were clean in December. I have been in remission since late August, after surgery in May 2011.

    Have you been in remission? Praying that the new plan will work!

    Carla
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #4
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    Sorry to hear your news
    Sorry to hear your news. I find it hard to fathom if your CA 125 is only 2? Regarding Topotecan, I finished it 6 weeks ago and it really brought my numbers down as mine were 1,727. I will get my CT scan results on Thursday so I will report back on how effect it has been. Topotecan was easy to take. I had very little nausea but it did make me tired. Another plus - I kept my hair. It thinned and my eye lashes and eye brows thinned too. Take care love Tina xxxxx
  • kikz
    kikz Member Posts: 1,345 Member
    #5
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    Tina Brown said:

    Sorry to hear your news
    Sorry to hear your news. I find it hard to fathom if your CA 125 is only 2? Regarding Topotecan, I finished it 6 weeks ago and it really brought my numbers down as mine were 1,727. I will get my CT scan results on Thursday so I will report back on how effect it has been. Topotecan was easy to take. I had very little nausea but it did make me tired. Another plus - I kept my hair. It thinned and my eye lashes and eye brows thinned too. Take care love Tina xxxxx

    Sorry for your news, Linda,
    sending prayers and good thoughts your way.

    Karen
  • karen1951
    karen1951 Member Posts: 103
    #6
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    linda....it's always hard to
    linda....it's always hard to hear bad news. you will be in my thoughts and prayers.....i hope the topotecan does the trick for you....side effects should be pretty mild...it was for me....please keep us posted...we are all in this together....karen
  • mopar
    mopar Member Posts: 1,972 Member
    #7
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    HUGS TO YOU, LINDA
    Not the news you wanted to hear. But what do they mean by 'progression'? I realize there are very few diagnostic tests available to tell us what's going on, and that progression indicates that the current plan wasn't working. But, don't give up hope! Two is still an extraordinarily good number, one I wish I would have had these past 12 years! So I think that even though there's 'progression', doesn't necessarily mean it's a lot, just enough to rethink the plan.

    Lots of Hugs and Prayers to you, Linda.

    Monika
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #8
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    mopar said:

    HUGS TO YOU, LINDA
    Not the news you wanted to hear. But what do they mean by 'progression'? I realize there are very few diagnostic tests available to tell us what's going on, and that progression indicates that the current plan wasn't working. But, don't give up hope! Two is still an extraordinarily good number, one I wish I would have had these past 12 years! So I think that even though there's 'progression', doesn't necessarily mean it's a lot, just enough to rethink the plan.

    Lots of Hugs and Prayers to you, Linda.

    Monika

    Dear Linda
    So sorry you got bad news but hoping and praying that the new chemo kicks your cancer's butt!

    Kelly
  • JoWin615
    JoWin615 Member Posts: 150 Member
    #9
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    That sucks
    But look at it as just another bump in the road there to test your endurance. Ha! You will prevail.

    I had a down day too. When I went for the 2nd part of my gemzar, my platelets were already so low they had to cut back the amount of drug by 25%. This is only the first cycle. It is so frustrating to feel so helpless.

    Sending good energy your way, Jo
  • VictoriaSF
    VictoriaSF Member Posts: 165
    #10
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    JoWin615 said:

    That sucks
    But look at it as just another bump in the road there to test your endurance. Ha! You will prevail.

    I had a down day too. When I went for the 2nd part of my gemzar, my platelets were already so low they had to cut back the amount of drug by 25%. This is only the first cycle. It is so frustrating to feel so helpless.

    Sending good energy your way, Jo

    sending prayers
    Linda! sorry to hear your news - i will say prayer and send good energy! please stay optimistic - topotecan should help.
    hugs
    Victoria
  • Mwee
    Mwee Member Posts: 1,338
    #11
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    Dear Linda
    You are one of the strongest and most positive warriors I know! I was so pleased for you that you would be getting time off from chemo, but you know what to do... you'll dust yourself off, start up on the topecan and kick that progression in the gut. You'll do it because you love your life and your family and we'll be right here.
    ((((HUGS)))) Maria
  • antcat
    antcat Member Posts: 270
    #12
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    Dear Linda
    I'm so sorry to hear about your news. I know how it feels to hear your CA 125 is coming down and then hear there's tumor progression. That recently happened to me, although it didn't go down as low as yours. I dropped a whole 11 points and I said to the doctor, this makes no sense, the CT scan showed tumor progression and my CA 125 is coming down. I tried topotecan, but unfortunately it didn't work for me. The only thing I found with topotecan was that it greatly affected my blood counts and I was very tired. I'm now on an oral pill Hexalen, which is just used for ovarian cancer. It isn't widely used so I don't know if that's good or bad, I'll see with the next CT scan. But, please try to keep the faith, I know it's hard and I don't always feel this way. Keep us informed about your status. Take care.
  • clamryn
    clamryn Member Posts: 508
    #13
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    mom2greatkids said:

    Hi Linda,
    That has to be
    Hi Linda,

    That has to be discouraging. Now I will be cautious of my CA-125. It was 7.5 in December. Pet Scan and CT's were clean in December. I have been in remission since late August, after surgery in May 2011.

    Have you been in remission? Praying that the new plan will work!

    Carla

    Carla, I had ovarian in 1991. Returned in 2008. So that was a long remission. Took chemo in 2008 and I was NED all of 2009. Returned in 2010 and have been fighting it ever since. Please don't judge by my CA125. I truly believe that someone made a mistake. I am a firm believer in the pet/scan...not the CA125.

    Linda
  • clamryn
    clamryn Member Posts: 508
    #14
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    Tina Brown said:

    Sorry to hear your news
    Sorry to hear your news. I find it hard to fathom if your CA 125 is only 2? Regarding Topotecan, I finished it 6 weeks ago and it really brought my numbers down as mine were 1,727. I will get my CT scan results on Thursday so I will report back on how effect it has been. Topotecan was easy to take. I had very little nausea but it did make me tired. Another plus - I kept my hair. It thinned and my eye lashes and eye brows thinned too. Take care love Tina xxxxx

    How often
    Hi Tina, I was wondering how often you took the topotecan. They are putting me on it every week. They said it is about an hour drip. Good luck with the CT results.

    Linda
  • clamryn
    clamryn Member Posts: 508
    #15
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    Mwee said:

    Dear Linda
    You are one of the strongest and most positive warriors I know! I was so pleased for you that you would be getting time off from chemo, but you know what to do... you'll dust yourself off, start up on the topecan and kick that progression in the gut. You'll do it because you love your life and your family and we'll be right here.
    ((((HUGS)))) Maria

    thanks Maria
    You know, during my time off from chemo, I didn't really gain a lot of strength back. My daughter and I was talking about that. Makes me wonder too if I wouldn't have had the break from chemo, maybe I wouldn't have had the progression. It sure did come on fast.

    Hind sight....20/20

    Linda
  • clamryn
    clamryn Member Posts: 508
    #16
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    antcat said:

    Dear Linda
    I'm so sorry to hear about your news. I know how it feels to hear your CA 125 is coming down and then hear there's tumor progression. That recently happened to me, although it didn't go down as low as yours. I dropped a whole 11 points and I said to the doctor, this makes no sense, the CT scan showed tumor progression and my CA 125 is coming down. I tried topotecan, but unfortunately it didn't work for me. The only thing I found with topotecan was that it greatly affected my blood counts and I was very tired. I'm now on an oral pill Hexalen, which is just used for ovarian cancer. It isn't widely used so I don't know if that's good or bad, I'll see with the next CT scan. But, please try to keep the faith, I know it's hard and I don't always feel this way. Keep us informed about your status. Take care.

    CA125
    I have to take my CA125 on Friday and will find out on Tuesday the results. I am very anxious to find out what it will be. I am going to go to the same lab that took the last one that reported the 2. If it is really high....that will tell me that someone did probably make a mistake.
  • carolenk
    carolenk Member Posts: 907 Member
    #17
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    clamryn said:

    CA125
    I have to take my CA125 on Friday and will find out on Tuesday the results. I am very anxious to find out what it will be. I am going to go to the same lab that took the last one that reported the 2. If it is really high....that will tell me that someone did probably make a mistake.

    CA-125
    From what I've observed by following the posts on the discussion board, the CA-125 could stay low if the cancer is mainly in lymph nodes. Do you have a copy of your PET/CT scan report?

    I am so sorry you have to deal with all of this.
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #18
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    carolenk said:

    CA-125
    From what I've observed by following the posts on the discussion board, the CA-125 could stay low if the cancer is mainly in lymph nodes. Do you have a copy of your PET/CT scan report?

    I am so sorry you have to deal with all of this.

    Linda
    Every time I come to this site and see your beautiful face and kind words..I am grateful . You always have such inspiring words for us with a bit of humor. I hope you can find a tx. that works and kicks cancer out. You have been chemoing for a long time, ,,,val
  • karen1951
    karen1951 Member Posts: 103
    #19
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    clamryn said:

    How often
    Hi Tina, I was wondering how often you took the topotecan. They are putting me on it every week. They said it is about an hour drip. Good luck with the CT results.

    Linda

    tina...i took topotecan once
    tina...i took topotecan once a week for three weeks and then had a week off...then the whole process starts again....drip is short....less than an hour if i remember....2 10 minute meds first.....i had no side effects to speak of...maybe just a little tired....good luck...karen
  • lulu1010
    lulu1010 Member Posts: 367
    #20
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    poopergirl14052 said:

    Linda
    Every time I come to this site and see your beautiful face and kind words..I am grateful . You always have such inspiring words for us with a bit of humor. I hope you can find a tx. that works and kicks cancer out. You have been chemoing for a long time, ,,,val

    Hugs and Prayers!
    I too wonder what they meant by progression. Maybe it just meant it didnt seem to go away or just grew a little. Give the topecan a try and if that is not effective try another. I empathize with you having to wait for test results to see if it is helping. At least they are rechecking your CA 125 later this week. My ca 125 was only 149 when I was diagnosed with cancer all thru my abdomen so that test does not give me much comfort and I do know that they do make mistakes with it at times.
    I am sending prayers and hugs and hope this stops it and puts you in a long remission. Please keep us posted. Just like family we worry when we do not hear how you are doing.
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #21
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    Sorry you have to do more chemo
    This is so strange to have such a low ca125 but you can do this and I hope you get a long break this time. I am halfway thru my treatment of carbo/gemzar/avastin and I am tired and need a break after this. I cry for you and also for me, the tears tell me I am run down and need to rest. Wouldn't it be wonderful if all our problems could have such an easy solution (sigh)
    Best wishes to you, you are in my thoughts.
    Colleen

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