• betty's Avatar

    betty started following

    User: kalindria

  • FLGardenGirl's Avatar

    FLGardenGirl wrote on betty's wall

    I’m new to this site & wonder how you’re doing on Arimidex. My gyn/onc indicated he’d prescribe this medication indefinitely. My f/u post chemo visit is this week, so I have numerous questions for him.

    1 Comment
    • betty's Avatar
      betty

      Sorry I didn't get back with you . It's been a while since I have been on the site.. I am doing Ok with the Arimidex. I have been taking it for 11 months now and my CA 125 has gone down from 787 to 196.. I have my yearly CT scan Dec 11th, I guess that will tell me more. The doctor told me that the pill doesn't work for everyone but it's working for me.. I hope that you are doing well and if you are taking Arimidex it is working for you..

      about 1 month ago
  • betty's Avatar

    betty started following

    Question: Arimidex

  • betty's Avatar

    betty asked a questionOvarian and Fallopian Tube Cancer

    Arimidex

    • Tinaweebe's Avatar
      Tinaweebe

      Hi Betty. I took it for about 6 months. During that time, I didn't grow any body hair back and my joints killed me. Especially my knees. It's been 6 months now that I've been off of it and my knees still hurt.
      I know this doesn't happen to everyone and I hope it doesn't to you.

      about 1 year ago
    • cllinda's Avatar
      cllinda

      I have been on it for over five years. No real problems. A few hot flashes but no big deal.
      My doctor wants me on it for ten years. It is thought to keep breast cancer away.

      about 1 year ago
  • betty's Avatar

    betty asked a questionOvarian and Fallopian Tube Cancer

    CA 125

    12 answers
    • kalindria's Avatar
      kalindria

      I'm with Sblacksbear! I'd want a second opinion. Of course my CA 125 is very reactive and very indicative of the state of my disease which isn't true for everyone.

      How often is your CA 125 being tested and has the rise been fast or slow? If you're not being tested monthly, perhaps more frequent tests are in order. This may be a fluke brought on by infection rather than a disease recurrence.

      I had a recurrence of my stage IV ovarian cancer in the summer of 2016 and one indicator was my slowly rising CA 125. It got to 84 before the cancerous nodules (of 1 and 2 CM) were visible on CT scans.

      Don't worry too much about the difference between stage 3 and 4; you and I are both considered "late stage" and neither is great. But with the help of our medical teams, we can still live a great life and enjoy ourselves.

      Ask about a second opinion or perhaps getting your CT scan sooner. For your peace of mind if nothing else.

      over 1 year ago
    • lhobbsn99's Avatar
      lhobbsn99

      Dear Bettty,

      My experience is that when my CA 125 came in at 40, the Dr ordered CT Scan, saw some activity, then ordered PET confirming recurrence. Started chemo within 3 days... the new cocktail is Carbo-Platin and Doxil (the red drug) every 28 days. Next treatment is scheduled for next week.

      I'm in the corner with the other ladies, a second opinion is always a good idea. If that isn't a good option because of where you are located, then I'l request a new CA125 as soon as possible. Assuming you've already met your deductible for the year... what is the downside to new scan?

      Best wishes, your concerns are valid. Sometimes you have to be your own advocate. Wishing us all the best...

      Linda

      over 1 year ago
    • kalindria's Avatar
      kalindria

      Hi Betty - checking in to see if you've had any news or made progress? We care.

      over 1 year ago
  • betty's Avatar

    betty started following

    Question: CA 125