Rising CA125, Negative Scans, Letrozole

ohcici
ohcici Member Posts: 4
in Ovarian Cancer #1

Hi Ladies,

I was treated with Dose Dense Carobplatin/Taxol for Stage II cancer in 2015.  When I completed Chemo 9/15 my CA125 was 7 and stayed under 10 for almost 2 years.  My CA125 then went to 28, then a month later 268 and now 2 weeks later 470.  I have had 2 CT-PET Scans over the past 3 months and both were negative for cancer.  Because of the rapid CA125 increase my Dr. has prescibed an estrogen blocker in pill form - Letrozole 2.5 mg daily and will retest my CA125 in a month.  Has anyone with a negative PET-SCAN & a high CA125  gone back on Chemo?  Has anyone tried Letrozole - did it help lower you CA125?

I would appreciate your thoughts and comments.  

 

 

Comments

  • paddison
    paddison Member Posts: 8 Member
    #2
    I too have been having high

    I too have been having high CA125 levels.  In May, it was 12.  August, was 295, then 4 days later 460. CT scan showed nothing.  3 weeks later, it was 2640.  PET scan, showed no cancer, but some kidney stones and kidney inflammation.   Had kidney stones removed 2 weeks ago,  and we are waiting another week to check CA125.  I was convinced there was cancer, I haven't felt right in weeks.  Yesterday, I started bleeding like a normal period.  I will be calling Dr in morning. 

    I have heard that the CA125 level doesn't mean cancer, but it is hard when the numbers go up.  We automatically think the worse.  Stay positive.

     

  • Daffodil5
    Daffodil5 Member Posts: 2
    #3
    High CA125 levels

    I've just started second-line chemo of pegylated liposomal doxorubicin (the bright orangey-red one) after my Ca125 went up to about 825 but a CT scan showed no masses but a little bit of fluid in the abdomen. Also had a PET scan in August, which also showed nothing. It's too early for a follow-up CA125 test. I hope this information helps.

     

    I've not tried letrozole—how have others found this medicine?

  • ohcici
    ohcici Member Posts: 4
    edited November 2017 #4
    Update - I month Letozole

    Good news - After 30 days on Letrozole (generic for femara) my CA125 was retested and it dropped 82 points.  I am going to be retested at the end of December.  So far (fingers crossed) I have had no side effects that can be associated with this medication.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #5
    ohcici - question for you. 

    ohcici - question for you.  Was the Letrozole part of a trial?  Are you in the U.S.?  Can you tell us if you are working with a cancer center or a particular hospital?  This is great news and I am sure the other women would be interested in this.

  • ohcici
    ohcici Member Posts: 4
    #6
    NoTimeForCancer said:

    ohcici - question for you. 

    ohcici - question for you.  Was the Letrozole part of a trial?  Are you in the U.S.?  Can you tell us if you are working with a cancer center or a particular hospital?  This is great news and I am sure the other women would be interested in this.

    My doctor did not say this was a trial.  Just working with my oncologist who is not part of specific ancer center or hospital.  According to my doctor my cancer is a homone receptor (estrogen positive) and the Letrozole starves the ovairian cancer of estrogen.  I go back in a month for another CA125 test and will keep you posted.  

  • paddison
    paddison Member Posts: 8 Member
    edited November 2017 #7
    rising ca125

    I have been fighting my CA125 levels since August 2017. It went up and down, but my scans showed no cancer.  I was having stomaach issues and an ultrasound showed a polp in my gallbladder.  I went in for a gallbladder removal...the surgeon found fluid on my abdomen, and nodules on my peritoneum.  He had one boipsied and it is reccurent ovarian cancer.  He left the gallbladder and I am srarting Doxil next week.  I was pretty certain that the pain I was feeling was not gallbladder, but fluid on my abdomen.

    We all know our bodies...if I hadn't been scheduled for this procedure, I would have had my next appt and CA125 in 3 months.  If you are not feeling well about what the doctors say, keep trying.

     

     

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    edited November 2017 #8
    paddison said:

    rising ca125

    I have been fighting my CA125 levels since August 2017. It went up and down, but my scans showed no cancer.  I was having stomaach issues and an ultrasound showed a polp in my gallbladder.  I went in for a gallbladder removal...the surgeon found fluid on my abdomen, and nodules on my peritoneum.  He had one boipsied and it is reccurent ovarian cancer.  He left the gallbladder and I am srarting Doxil next week.  I was pretty certain that the pain I was feeling was not gallbladder, but fluid on my abdomen.

    We all know our bodies...if I hadn't been scheduled for this procedure, I would have had my next appt and CA125 in 3 months.  If you are not feeling well about what the doctors say, keep trying.

     

     

     

    paddison, yes, you have to be

    paddison, yes, you have to be your own advocate and push when things aren't right.

  • lettyboo1961
    lettyboo1961 Member Posts: 4
    #9
    Original Diagnosis

    I was first diagnosed with stage 3 Ovarian cancer in December of 2013. I was having horrible stomach pains, I went to my primary doctor who scheduled me for a CT scan. After the initial CT scan they sent me directly for an ultra sound which showed both my ovaries were the size of large grapefruits.December 26th I met with a surgeon who scheduled me for a total hysterectomy on January 2nd 2014. On January 30th I had a port put in. On February 4th I recieved my first of six chemo treatments. Once every 3 weeks for the next 18 weeks Carbo/Taxol combo. I weathered through the treatments pretty well and was"cancerfree" for 3 years. When I went for a six month check-up in March of 2017 my CA125 was on the rise. After pet scans CT,PET scans and many other tests it was determined that I had a tumor in the mesorectal region. Of coarse it was malignant. Because of the location of the tumor it was determined I have a Chryoblasion. The tumor was frozen and now I am having 18 treatments of chemo.After the first 4 I developed a horrible allergic reaction to Carbo,so now tomorrow I have my 16th treatment of just Taxol. After that 2 more and hopefully I am done.

  • ohcici
    ohcici Member Posts: 4
    #10
    CA125 - Dropping with Letrozole

    Update - I was retested at the end of December -  my CA125 has dropped to 261, down from from 461 in October.  Next CA125 test in March.  I know Letrozole is usually given for Breast Cancer but, has anyone taken for Ovarian?   So far I have been blessed with no side effects.

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