Tamoxifen and CA-125

groundeffect
groundeffect Member Posts: 639 Member
edited March 2014 in Ovarian Cancer #1
Hello to all,

As I've posted before, I've been prescribed tamoxifen because my CA-125 started rising in September last year. It peaked at 284 about two months after I started taking tamoxifen, and has been going down since. My October reading was 114, still high, but not causing me much concern.

Since the CA-125 started going up (it was out of the normal range on my five-year checkup anniversary, darn it), I've had three CT scans and a PET scan that haven't shown any disease. Of course, I monitor all little aches and pains diligently, but that's just a routine I think we all get into.

I wanted to drop in and give a little positive report about this. A nurse in my oncologist's office told me I'd get hot flashes, and I was truly doubtful - I told her I hadn't had any of any real significance since my surgery. She assured me again I'd get them, and boy, do I ever! I guess it's a small price to pay for the effectiveness of the drug.

Comments

  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #2
    thanks for sharing
    Hi Sue,

    Thanks for sharing and WOOHOO on the continuation of lower CA125 numbers. I know your post will help other women be a little less anxious of changing numbers. I am the opposite of you, I can have a ca125 of 7 and still have lots of measurable disease. Just goes to show you need to use all the tools out there. Hugs N Prayers Bonnie
  • floridajo
    floridajo Member Posts: 480
    #3
    Great News
    This is good news for you..and you have made the 5 year mark which deserves much celebration!!
    My Onc is talking of putting me on Tamoxifen after I finsh this current chemo I'm on,so I hope you don't mind if I ask some questions regarding the tamoxcifen. How does it affect you?? Any nausea,vomiting or hair loss?? What about fatique?? What is your dose and what is the schedule?? Again i hope you don't mind all the questions and thanks for coming on and reporting some very much needed good news!!!(((hugz)))~~~Joanne
  • groundeffect
    groundeffect Member Posts: 639 Member
    #4
    floridajo said:

    Great News
    This is good news for you..and you have made the 5 year mark which deserves much celebration!!
    My Onc is talking of putting me on Tamoxifen after I finsh this current chemo I'm on,so I hope you don't mind if I ask some questions regarding the tamoxcifen. How does it affect you?? Any nausea,vomiting or hair loss?? What about fatique?? What is your dose and what is the schedule?? Again i hope you don't mind all the questions and thanks for coming on and reporting some very much needed good news!!!(((hugz)))~~~Joanne

    Not bad at all
    Hi Joanne,

    I've been taking 20mg of Tamoxifen once a day, with minimal side effects. Absolutely no hair loss, nausea, or fatigue that I can attribute to the tamoxifen. I was warned about having hot flashes, which I doubted I'd have, but I've had them now for at least a few months.

    Three of us in my support group are taking tamoxifen - one, who has some evidence, takes 20mg twice a day, and the other (who has a level of less than 5, I think) takes 20mg/once a day.

    The three of us did a five-mile walk in September for the National Ovarian Cancer Coalition, and we all did it on our own two feet. I guess we could all be a lot worse off!

    If you have any more questions, ask away!

    Sue
  • groundeffect
    groundeffect Member Posts: 639 Member
    #5
    BonnieR said:

    thanks for sharing
    Hi Sue,

    Thanks for sharing and WOOHOO on the continuation of lower CA125 numbers. I know your post will help other women be a little less anxious of changing numbers. I am the opposite of you, I can have a ca125 of 7 and still have lots of measurable disease. Just goes to show you need to use all the tools out there. Hugs N Prayers Bonnie

    Just so they keep dropping!
    Hi Bonnie,

    Thanks for positive reinforcement. This problem we all have just keeps opening so many new avenues of drugs and treatment, it's hard to digest it all.

    There's new technology being explored in our area - treating cancer by using radio waves. A man who was involved with local television started investigating the possibility (he has non-Hodgkin's lymphoma), and it's shown some promise. This is a link for more about John Kanzius and his radio frequency therapy - http://en.wikipedia.org/wiki/John_Kanzius. M.D. Anderson in Houston did some research with it, and it's moving forward.

    I'm always glad to share!

    Sue
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #6
    groundeffect said:

    Just so they keep dropping!
    Hi Bonnie,

    Thanks for positive reinforcement. This problem we all have just keeps opening so many new avenues of drugs and treatment, it's hard to digest it all.

    There's new technology being explored in our area - treating cancer by using radio waves. A man who was involved with local television started investigating the possibility (he has non-Hodgkin's lymphoma), and it's shown some promise. This is a link for more about John Kanzius and his radio frequency therapy - http://en.wikipedia.org/wiki/John_Kanzius. M.D. Anderson in Houston did some research with it, and it's moving forward.

    I'm always glad to share!

    Sue

    Radio Waves
    Hi Sue, I saw this man and heard his story on dateline or one of the news shows. Really promising, I think it would work for ovca once they have it available or what I have read and heard about it. Hugs Bonnie

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