Starting tamoxifen tomorrow

jennytwist
jennytwist Member Posts: 896
edited March 2014 in Breast Cancer #1
I'm 55 and pre-menopausal, although with the chemo I've just completed (a month ago) the Dr. says I'm in "clinical menopause". In reading all the info on tamoxifen I'm wondering, who out there is in the 50-60 group using or has used tamoxifen and how did it effect you? The side effects sound pretty serious - esp. if you are older. When I asked the Dr about not taking it she said that wasn't an option. I'd appreciate any feedback. Thanks much!

Comments

  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Welcome, Jenny.
    I'm in your age group but I'm still doing my chemo and have rads to do. My oncologist hinted that I would not be taking Tamoxifen but another drug. I don't recall the name. I really just wanted to welcome you. I'm sure you'll be hearing from one of these amazing women shortly and she'll be able to answer your questions.
  • Lily.L
    Lily.L Member Posts: 2
    Hi Jenny
    I was very worried about having to take Tamoxifen too but it's supposed to reduce my cancer risk by half, so I knew I had to take it in spite of the possible side effects. I'm 51 and have been taking Tamoxifen for more than half a year now. I do not experience any of the side effects. Although there are no rules to follow with Tamoxifen, I've set up my own which I think may have helped me. I stay somewhat active, that is, I move about doing chores, walk around the house during TV commercials, and walk for at least 30 minutes most days of the week. I also take the Tamoxifen around mid-day after I've eaten something, or by early afternoon and not late at night. As to the possibility of developing uterine cancer, I visit my gynecologist every six months for a check-up. I hope this helps and I wish you the best of health!
  • jennytwist
    jennytwist Member Posts: 896
    MyTurnNow said:

    Welcome, Jenny.
    I'm in your age group but I'm still doing my chemo and have rads to do. My oncologist hinted that I would not be taking Tamoxifen but another drug. I don't recall the name. I really just wanted to welcome you. I'm sure you'll be hearing from one of these amazing women shortly and she'll be able to answer your questions.

    Thank you
    Thanks so very much for the nice welcome! I hope you are doing well. I was told because I was pre-menopausal when I began my chemo I'd be put on tamoxifen first - at least a year so they know I'm post-menopausal. I'm just very anxious about starting it with all the warnings/possilbe side effects I've read. I didn't need radiation so I'm thankful for that. Take care and thanks again for your kind comments.
  • jennytwist
    jennytwist Member Posts: 896
    Lily.L said:

    Hi Jenny
    I was very worried about having to take Tamoxifen too but it's supposed to reduce my cancer risk by half, so I knew I had to take it in spite of the possible side effects. I'm 51 and have been taking Tamoxifen for more than half a year now. I do not experience any of the side effects. Although there are no rules to follow with Tamoxifen, I've set up my own which I think may have helped me. I stay somewhat active, that is, I move about doing chores, walk around the house during TV commercials, and walk for at least 30 minutes most days of the week. I also take the Tamoxifen around mid-day after I've eaten something, or by early afternoon and not late at night. As to the possibility of developing uterine cancer, I visit my gynecologist every six months for a check-up. I hope this helps and I wish you the best of health!

    Thanks so much!
    Thanks so much for your quick response and very helpful info. I work in a library so I tend to do information overload. The Dr. says I'm late for menopause and that's why I need to use the Tamoxifen (that's what they use for pre-menopausal women) - and then all the info on the older you are just seems to make it worse. I was never so paranoid before my diagnosis. I hope you are doing well and thanks again so very much!
  • outdoorgirl
    outdoorgirl Member Posts: 1,565

    Thanks so much!
    Thanks so much for your quick response and very helpful info. I work in a library so I tend to do information overload. The Dr. says I'm late for menopause and that's why I need to use the Tamoxifen (that's what they use for pre-menopausal women) - and then all the info on the older you are just seems to make it worse. I was never so paranoid before my diagnosis. I hope you are doing well and thanks again so very much!

    Yes,
    if you are pre-menopausel,and your cancer was ER,PR positive,tamoxifen is the standard meds.I know,unfortunately every med comes with it's own side effects and they can be pretty scary sounding!I've been on it for a little over a year now and my onc has decided to keep me on it until I've taken it for 5 years since the se's so far havn't been bad for me.
    I'm 47..
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    drugs
    I'm 56 and surgically menopausal *before* breast cancer. I had a lumpectomy in January, 33 radiation treatments and have been taking tamoxifen since April. I have had some leg cramping & hot flashes. But I started breaking the pills in half and taking half in the morning and half at night and that seems to help.

    Maureen
  • tgf
    tgf Member Posts: 950 Member

    drugs
    I'm 56 and surgically menopausal *before* breast cancer. I had a lumpectomy in January, 33 radiation treatments and have been taking tamoxifen since April. I have had some leg cramping & hot flashes. But I started breaking the pills in half and taking half in the morning and half at night and that seems to help.

    Maureen

    tamoxifen
    I'm 65 ... had the lumpectomy 1/21 ... finished taxol/herceptin end of May ... finished radiation first part of July ... and am now in "transition" from zoloft/wellbutrin to effexor ... so I can start tamoxifen in a week or two. My oncologist also said it is NOT and option ... it is something I must do ... for at least 2 years.

    hugs.
    teena
  • jennytwist
    jennytwist Member Posts: 896
    tgf said:

    tamoxifen
    I'm 65 ... had the lumpectomy 1/21 ... finished taxol/herceptin end of May ... finished radiation first part of July ... and am now in "transition" from zoloft/wellbutrin to effexor ... so I can start tamoxifen in a week or two. My oncologist also said it is NOT and option ... it is something I must do ... for at least 2 years.

    hugs.
    teena

    Thanks to everyone!
    Thanks so much for all the comments about tamoxifen - I'm not sure why I was so paranoid about starting it - I knew I had to take it!
    Since I've first logged onto this site (this past Wed) - I'm so amazed at all the wonderful caring and sharing there is. I've been reading almost nonstop whenever I've had a chance. I wish I hadn't waited so long - I knew about the site last April when I had my surgery but I guess I was still in denial thining I could handle it alone. Some mornings I still wake up thinking it's all a bad dream - then when I see my bald head and get in the shower (I had a mastectomy - one side) I know it's real. I've had great support from my family - and friends but it's different reading the caring and sharing from all you who are going through it, have been through it, or are going through it again. I'm so thankful for all of you -
    -Jenny
  • susie09
    susie09 Member Posts: 2,930

    Thanks to everyone!
    Thanks so much for all the comments about tamoxifen - I'm not sure why I was so paranoid about starting it - I knew I had to take it!
    Since I've first logged onto this site (this past Wed) - I'm so amazed at all the wonderful caring and sharing there is. I've been reading almost nonstop whenever I've had a chance. I wish I hadn't waited so long - I knew about the site last April when I had my surgery but I guess I was still in denial thining I could handle it alone. Some mornings I still wake up thinking it's all a bad dream - then when I see my bald head and get in the shower (I had a mastectomy - one side) I know it's real. I've had great support from my family - and friends but it's different reading the caring and sharing from all you who are going through it, have been through it, or are going through it again. I'm so thankful for all of you -
    -Jenny

    Jenny, this site is great!
    Jenny, this site is great! I am so happy that you found comfort here too. I am not in your age group, nor, am I taking tamoxifen, but, I wanted to wish you good luck with your tamoxifen!

    ♠♣ Susie ♠♣
  • Alexis F
    Alexis F Member Posts: 3,598
    susie09 said:

    Jenny, this site is great!
    Jenny, this site is great! I am so happy that you found comfort here too. I am not in your age group, nor, am I taking tamoxifen, but, I wanted to wish you good luck with your tamoxifen!

    ♠♣ Susie ♠♣

    Hi Jenny! I want to say
    Hi Jenny! I want to say good luck with tamoxifen. Post and keep us updated on how you are doing with it.

    Lex♥
  • jennytwist
    jennytwist Member Posts: 896
    susie09 said:

    Jenny, this site is great!
    Jenny, this site is great! I am so happy that you found comfort here too. I am not in your age group, nor, am I taking tamoxifen, but, I wanted to wish you good luck with your tamoxifen!

    ♠♣ Susie ♠♣

    Thanks!
    Susie,
    Thanks for your note - everyone is so wonderful here - full of support and caring no matter where we seem to be in our journey - I hope you are doing well!
    take care
    -Jenny
  • jennytwist
    jennytwist Member Posts: 896
    Alexis F said:

    Hi Jenny! I want to say
    Hi Jenny! I want to say good luck with tamoxifen. Post and keep us updated on how you are doing with it.

    Lex♥

    Thank you!
    Lex,
    Thanks for your comments also - as I said, everyone here is so caring and kind - all the encouragement helps! I hope you are doing well!
    -Jenny
  • mimivac
    mimivac Member Posts: 2,143
    Tamoxifen
    Welcome, Jenny. I am ER negative, so Tamoxifen is not an option for me, but I know many who are on it. Side effects vary, and some do not have any at all. I hope this is the case for you. Your doctor may choose to switch you to aromatase inhibitors at some point. These reduce estrogen in the body. Tamoxifen, on the other hand, blocks your body from using estrogen to make breast cancer cells. For many the regimen is Tamoxifen first, and aromatase inhibitors afterwards. I wish you luck.

    Mimi
  • jennytwist
    jennytwist Member Posts: 896
    mimivac said:

    Tamoxifen
    Welcome, Jenny. I am ER negative, so Tamoxifen is not an option for me, but I know many who are on it. Side effects vary, and some do not have any at all. I hope this is the case for you. Your doctor may choose to switch you to aromatase inhibitors at some point. These reduce estrogen in the body. Tamoxifen, on the other hand, blocks your body from using estrogen to make breast cancer cells. For many the regimen is Tamoxifen first, and aromatase inhibitors afterwards. I wish you luck.

    Mimi

    Thanks!
    Hi Mimi,
    Thanks for your note - yes, the nurse did say once I've been memopausal for a year they may switch my medication. I've been taking the Tamoxifen since Friday and I'm not sure if I'm having regular hot flashes or hot flashes from the Tam. I guess it doesn't matter. I had just started having them (since being through chemo) a few weeks ago. I'm trying not to be paranoid about every little ache & pain. (Does that ever stop?)
    Thanks again for your kind note - I hope you are doing well.
    -Jenny
  • HillBillyNana
    HillBillyNana Member Posts: 107
    Tamoxifen
    Hi Jenny,

    I am now 64. I was diagnosed at 58 with ER positive breast cancer. I had a lumpectomy, then half my chemo, then radiation, then the rest of my chemo. I lost my hair twice. It grew back during the radiation period. I had a hysterectomy when I was 32, so I had not had a period for many years. I did still have my ovaries and apparently they quit me in my mid to late 40s because I started haveing hot flashes and it disturbed my sleep till I had to do somethign so I took Premarin for about 10 years. Of course I stopped that the day of diagnose. And the hot flashes came back. They were terrible. And after my chemo and radiation was done I started on Tamoxifen and the doctor warned me the hot flashes were one of the worst side effects. Again my sleep was disturbed. One thing I did was take ativan before bed to get me to sleep. The doctor told me it did not stop me from having hot flashes but I would be able to sleep through them. That worked for me. I took the Tamoxifen for 5 years as recommended and the doctor gave me the option of taking no medications for 6 months, then start on Femara in November. I have been off the Tamoxifen for over 4 months and still have the hot flashes. So I don't know if that was even a side effect for me. I do hope these hot flashes stop soon. I still take the ativan to get to sleep. It is addictive and i would like to stop it. I have cut it in half and only take half a pill which is working most of the time. I think a good nights sleep cuts down on many other problems, like mood swings. But then I am only one person. Maybe I just didn't experience the other side effects. I have to say I did not read the list of side efffects. Those warnigns are scary to me but getting breast cancer was more scary. So I just took it. Let me know how you do on the Tamoxifen.
  • jennytwist
    jennytwist Member Posts: 896

    Tamoxifen
    Hi Jenny,

    I am now 64. I was diagnosed at 58 with ER positive breast cancer. I had a lumpectomy, then half my chemo, then radiation, then the rest of my chemo. I lost my hair twice. It grew back during the radiation period. I had a hysterectomy when I was 32, so I had not had a period for many years. I did still have my ovaries and apparently they quit me in my mid to late 40s because I started haveing hot flashes and it disturbed my sleep till I had to do somethign so I took Premarin for about 10 years. Of course I stopped that the day of diagnose. And the hot flashes came back. They were terrible. And after my chemo and radiation was done I started on Tamoxifen and the doctor warned me the hot flashes were one of the worst side effects. Again my sleep was disturbed. One thing I did was take ativan before bed to get me to sleep. The doctor told me it did not stop me from having hot flashes but I would be able to sleep through them. That worked for me. I took the Tamoxifen for 5 years as recommended and the doctor gave me the option of taking no medications for 6 months, then start on Femara in November. I have been off the Tamoxifen for over 4 months and still have the hot flashes. So I don't know if that was even a side effect for me. I do hope these hot flashes stop soon. I still take the ativan to get to sleep. It is addictive and i would like to stop it. I have cut it in half and only take half a pill which is working most of the time. I think a good nights sleep cuts down on many other problems, like mood swings. But then I am only one person. Maybe I just didn't experience the other side effects. I have to say I did not read the list of side efffects. Those warnigns are scary to me but getting breast cancer was more scary. So I just took it. Let me know how you do on the Tamoxifen.

    Thanks for your story...
    Hello HillBillyNana,
    Sounds like you've been through it! Have you asked your Dr. if the hot flashes will stop soon - I would think once you stopped the Tamoxifen those would stop. I did take Ativan when I was doing chemo to help me sleep - it was wonderful being able to sleep! These hot flashes are something else! I took a small desk fan to work today and that helped! I hope you continue to get good sleep - it's good only 1/2 Ativan is working - I agree, a good nights sleep cuts down on many other problems. Take care and thanks again for sharing your story and giving me encouragement - keep me posted on your hot flashes - hopefully they will be over soon and I'll let you know about the Tamoxifen.
    -Jenny
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