Afraid to start Tamoxifen

2

Comments

  • lintx
    lintx Member Posts: 697
    NJMom10 said:

    Took tamoxifen for 1 year then switched to anastrozole
    Hi Linda,
    Thanks to the 'experienced' ladies on this board, it sounds like you have the info you need to make this decision. I too, struggled with the Tamoxifen issue. Ordered the drug, then let it sit for 2 weeks before I started taking it. I was more worried about the risk of uterine cancer than anything else, because I was already experiencing pre-menopause SEs anyway. I took the drug for a year, then had my oncologist switch me to anastrozole, the generic of Arimidex, as I was fully menopausal then and this was one of the drugs of choice for my that stage of life. (I am 55 now, btw.)

    At my oncologists suggestion, before I started Tamoxifen, I had a check up with my gynecologist and an ultrasound to establish a baseline by which to watch for the 'thickening uterus' and possible cancer there. I had a second one done a year later and there was no change. My gynecologist will continue to monitor this.

    When I switched to Anastrozole, I experienced an increase in hot flashes at first, but those have lessened. I do daily exercise also, which helps lessen hot flashes in general.

    Let us know how you make out. Best of luck to you. Barbara

    Barbara
    It was so sweet of you to take the time to write me. Thanks so much. I do value everyone's suggestions. Who knew we'd ever be here in the first place, huh? Life!!!
  • Attygirl
    Attygirl Member Posts: 121
    I'm 49 years old
    and was diagnosed in April with small stage 1 IDC tumor which is hormone sensitive. I have had a lumpectomy and just finished 36 rads, no chemo. Tamoxifen is next up and I seem to have a mental block about it. Keep forgetting for schedule appt with medical onc and gynecologist for uterus baseline. Like you, I have lost sleep worrying about SEs, so these responses were very helpful. I want to do all that I can to reduce my chances of recurrence, so I am going to try it and see how I do...if I can just remember to call the doctor!
    Best wishes for a successful run with it!
  • lintx
    lintx Member Posts: 697
    Attygirl said:

    I'm 49 years old
    and was diagnosed in April with small stage 1 IDC tumor which is hormone sensitive. I have had a lumpectomy and just finished 36 rads, no chemo. Tamoxifen is next up and I seem to have a mental block about it. Keep forgetting for schedule appt with medical onc and gynecologist for uterus baseline. Like you, I have lost sleep worrying about SEs, so these responses were very helpful. I want to do all that I can to reduce my chances of recurrence, so I am going to try it and see how I do...if I can just remember to call the doctor!
    Best wishes for a successful run with it!

    Attygirl
    Mine is in the mail to me. So afraid I'll stare at the bottle for awhile! One person says she takes hers in the evening to avoid hot flashes during the day. I think I'll follow her lead. Lots of great advice on this site. Good luck to you, as well.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    lintx said:

    C Cynthia
    I will!

    I am so happy! You're two
    I am so happy! You're two word response has meant more to me than you will ever know. Please keep fighting. You are so worth it!
  • Faith1122
    Faith1122 Member Posts: 46
    Hi!
    I also was diagnosed with minimal stage 1 & decided on having a bilateral mastectomy. I also did not have to have chemo or rads but the Dr. Recommended Tamoxifen & I have been terrified to take it for fear of it making me emotional & gain weight. I finally filled the script 5 weeks ago after my implant exchange. My oncologist told me to try it & if I decided not to take it he would not fight me on it but if I was his daughter/wife or mother he would highly recommend me taking it as a precaution. I have 2 yound kids & it is already difficult for them to see their mom sick & in & out of hospitals having all of these surgeries. I am already struggling emotionally from having cancer & losing my breasts, I don't need a pill making me feel these emotions any more. At first I was really tired & my skin has been breaking out really bad but is finally getting a little better. Have been on the verge of tears the past 2 weeks but my 7 year old daughter has been really giving me a hard time which is just as upsetting as the cancer. I figure I have to tough it out for at least 5 months. Good luck with whatever you decide!
  • lintx
    lintx Member Posts: 697
    Faith1122 said:

    Hi!
    I also was diagnosed with minimal stage 1 & decided on having a bilateral mastectomy. I also did not have to have chemo or rads but the Dr. Recommended Tamoxifen & I have been terrified to take it for fear of it making me emotional & gain weight. I finally filled the script 5 weeks ago after my implant exchange. My oncologist told me to try it & if I decided not to take it he would not fight me on it but if I was his daughter/wife or mother he would highly recommend me taking it as a precaution. I have 2 yound kids & it is already difficult for them to see their mom sick & in & out of hospitals having all of these surgeries. I am already struggling emotionally from having cancer & losing my breasts, I don't need a pill making me feel these emotions any more. At first I was really tired & my skin has been breaking out really bad but is finally getting a little better. Have been on the verge of tears the past 2 weeks but my 7 year old daughter has been really giving me a hard time which is just as upsetting as the cancer. I figure I have to tough it out for at least 5 months. Good luck with whatever you decide!

    Faith
    You must be very young. I'm so sorry for what you've gone through. I truly know because I did it, too. That was some surgery, and I had immediate reconstruction, not implants. Plus, I had eight wks of itchy hives because I was given something w/penicillin, and I'm allergic. They checked my arm band 1,000 times and still gave it to me. Made recovery more difficult. I just had revision surgery, which was nothing in comparison. I still go through the teary stages, too. It seems like the medicine side effects are different for everyone, and I have to figure out how to be the glass half full person! It has been easier to be the half empty one since April when I first heard the news after my annual mammogram. I swear to you that I do not even remember driving home from the appt. There are so many women on here with wonderful stories and advice for us. We have to pick ourselves up when the low times hit us. I would give you a hug if I could! Take care.
  • lintx
    lintx Member Posts: 697
    mamolady said:

    It is scary at each stage of
    It is scary at each stage of treatment. I was the same way with the anastrazole. It took a couple of days to work up the courage to take the stupid pill. That was over a year ago. I had mild side effects that are mostly gone now. You could always try it and if you even have side effects, cross that bridge when you get to it. You should give yourself the best chance at staying cancer free.
    Cindy

    Cindy
    You're right. I ordered the med, and it is in the mail to me. We shall see. Seems everyone has doubts, but it helps to hear from other women in the same boat. Thanks, Linda
  • Frankie Shannon
    Frankie Shannon Member Posts: 457
    Hi i have been on Tamoxifen
    Hi i have been on Tamoxifen for 2 years and Gabapentin for the hot flashes and to help me sleep at night,i have only gained 17 pounds and still have hot flashes but they are minimal i am 69 years old have a bit of fatigue but thats the side affect of both drugs so is the weight gain.I have no other side affects.You can always try it and if you can't handle it then you can always stop.Every one reacts different to drugs so that is up to you.I am sure there are some that refuse to take it.Hope this helps on making up your mind.
    Hugs Frankie
  • sdukowitz
    sdukowitz Member Posts: 250
    Linda,
    It is so kind of you

    Linda,
    It is so kind of you to post replies to each individual you heard from ... good luck with the tamoxifin and every time I have a hot flash time I am just so glad it is working and think of it as a mild side effect now.... After a month or so, the daytime hot flashes got better and for night time I take my little fan with me when i travel to hotels or anywhere otherwise i keep it by my bedside .... wearing cotton clothing helps as well ..... sometimes I wear a tank top under clothing that soaks up any sweat and keeps your other clothing fresh ..... can always take off the sweaty tank top if you need to....... good luck! Sue D
  • sdukowitz said:

    Linda,
    It is so kind of you

    Linda,
    It is so kind of you to post replies to each individual you heard from ... good luck with the tamoxifin and every time I have a hot flash time I am just so glad it is working and think of it as a mild side effect now.... After a month or so, the daytime hot flashes got better and for night time I take my little fan with me when i travel to hotels or anywhere otherwise i keep it by my bedside .... wearing cotton clothing helps as well ..... sometimes I wear a tank top under clothing that soaks up any sweat and keeps your other clothing fresh ..... can always take off the sweaty tank top if you need to....... good luck! Sue D

    HI
    Wow it is so awesome to see all the support from everyone. Unfortunately we all have to be here, but we are not alone. I have 16 more rads treatment, have done 18. Then I will be taking arimidex. I do not know anything about it, so I am open to hear people's suggestions

    Thanks
    Patricia
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    sdukowitz said:

    Linda,
    It is so kind of you

    Linda,
    It is so kind of you to post replies to each individual you heard from ... good luck with the tamoxifin and every time I have a hot flash time I am just so glad it is working and think of it as a mild side effect now.... After a month or so, the daytime hot flashes got better and for night time I take my little fan with me when i travel to hotels or anywhere otherwise i keep it by my bedside .... wearing cotton clothing helps as well ..... sometimes I wear a tank top under clothing that soaks up any sweat and keeps your other clothing fresh ..... can always take off the sweaty tank top if you need to....... good luck! Sue D

    I was 62
    I was 62 when dx in 2009.I had a 2 lumpectomies(the cancer and one benign(found when they were prepping me).I was dx as being Stage 0 DCIS.Clear margins.Tumor was 1/2 centimeter.I was told I didn't need chemo or radiation but very important to take tamox.I'm like you.I pondered.I had the pills a couple months.Saw my surgeon and told him my worries.He said it helps keep the cancer from possibly spreading to other areas. Not long after that I had my husband take me for a ride while I took the pill all along worrying about a instant side effect(like my heart racing which I've had taking other meds). It will be 3 years in Dec for me.I have missed more than I want.I just Pray it works.

    I've also felt comfortable having a Total Hysteroctomy since tamox can cause some female problems.

    I'm like you small and very active.I do alot of my walking just around the house.I seldom sit down. On the go all the time.

    One thing that seems to bother me is food doesn't have a good taste.I think that can happen taking tamox.My husband thinks I forget more but I always have something to do and on the go.I go in so many different directions. Still though at 65 I feel pretty good except for the BC and that worry.Also my sister was just dx the same age as me(62) but hers is Stage 2 and the doctor thinks it may have spread.Will know more later after more tests.

    I suggest try it.You have no idea how much I was worried about it.Anytime I try new meds I feel uncomfortable when I read those side effects.

    Lynn Smith
  • lintx
    lintx Member Posts: 697

    I was 62
    I was 62 when dx in 2009.I had a 2 lumpectomies(the cancer and one benign(found when they were prepping me).I was dx as being Stage 0 DCIS.Clear margins.Tumor was 1/2 centimeter.I was told I didn't need chemo or radiation but very important to take tamox.I'm like you.I pondered.I had the pills a couple months.Saw my surgeon and told him my worries.He said it helps keep the cancer from possibly spreading to other areas. Not long after that I had my husband take me for a ride while I took the pill all along worrying about a instant side effect(like my heart racing which I've had taking other meds). It will be 3 years in Dec for me.I have missed more than I want.I just Pray it works.

    I've also felt comfortable having a Total Hysteroctomy since tamox can cause some female problems.

    I'm like you small and very active.I do alot of my walking just around the house.I seldom sit down. On the go all the time.

    One thing that seems to bother me is food doesn't have a good taste.I think that can happen taking tamox.My husband thinks I forget more but I always have something to do and on the go.I go in so many different directions. Still though at 65 I feel pretty good except for the BC and that worry.Also my sister was just dx the same age as me(62) but hers is Stage 2 and the doctor thinks it may have spread.Will know more later after more tests.

    I suggest try it.You have no idea how much I was worried about it.Anytime I try new meds I feel uncomfortable when I read those side effects.

    Lynn Smith

    Lynn
    You sound like me in that we never stop and rarely sit down! I'm very hyper. Thanks so much for taking the time to correspond. It helps so many of us to share. I just don't like meds of any sort. I hope I can report good progress soon. Have a great day!
  • lintx
    lintx Member Posts: 697

    Hi i have been on Tamoxifen
    Hi i have been on Tamoxifen for 2 years and Gabapentin for the hot flashes and to help me sleep at night,i have only gained 17 pounds and still have hot flashes but they are minimal i am 69 years old have a bit of fatigue but thats the side affect of both drugs so is the weight gain.I have no other side affects.You can always try it and if you can't handle it then you can always stop.Every one reacts different to drugs so that is up to you.I am sure there are some that refuse to take it.Hope this helps on making up your mind.
    Hugs Frankie

    Frankie
    You're right to say that we all react differently to drugs. I'm praying for minimal SE's. Thanks so much for sharing with all of us. Linda
  • lintx
    lintx Member Posts: 697

    HI
    Wow it is so awesome to see all the support from everyone. Unfortunately we all have to be here, but we are not alone. I have 16 more rads treatment, have done 18. Then I will be taking arimidex. I do not know anything about it, so I am open to hear people's suggestions

    Thanks
    Patricia

    Patricia
    I'm sure you'll hear as much info as you can handle! I feel better listening to other women in my shoes rather than DR's most times. I will always think that exercise and eating right should play a huge role. Go up to Sue's advice on hot flashes. She takes her med at night to avoid daytime flashes. I've already decided to do the same. I wish I could sit down and have a face to face conversation w/these women. Everyone is so caring and kind. Linda
  • lintx
    lintx Member Posts: 697
    sdukowitz said:

    Linda,
    It is so kind of you

    Linda,
    It is so kind of you to post replies to each individual you heard from ... good luck with the tamoxifin and every time I have a hot flash time I am just so glad it is working and think of it as a mild side effect now.... After a month or so, the daytime hot flashes got better and for night time I take my little fan with me when i travel to hotels or anywhere otherwise i keep it by my bedside .... wearing cotton clothing helps as well ..... sometimes I wear a tank top under clothing that soaks up any sweat and keeps your other clothing fresh ..... can always take off the sweaty tank top if you need to....... good luck! Sue D

    Sue
    No, you are kind for replying! Look at all of the useful info you've given to us. I have a friend with one of the little fans that fits in her purse. She pulls it out all day long. She says Target sells it in the hardware section. I'll buy that before the first pill is swallowed..ha I live in hot TX, so I know about light clothing and tank tops, as well. I remember in my 40's, after my hysterectomy, how I'd open the freezer and stick my face in for a few minutes. Whatever works. Linda
  • Kylez
    Kylez Member Posts: 3,761 Member
    lintx said:

    Scary at ea stage
    Yes, it is scary. I hadn't considered the SE's may subside over time, if they even present themselves. Thanks for your input. Linda

    I was scared of taking tamox
    I was scared of taking tamox too and still haven't and probably never will. I got the pills here at home, but, doubt I will ever take one. I've been doing great without it, and, pray I continue. So many with recurrences took the hormone therapy and it didn't work and there is just a lot that I don't like about tamox.

    You do what is best for you, and, only you.


    Hugs, Kylez
  • sdukowitz
    sdukowitz Member Posts: 250
    lintx said:

    Sue
    No, you are kind for replying! Look at all of the useful info you've given to us. I have a friend with one of the little fans that fits in her purse. She pulls it out all day long. She says Target sells it in the hardware section. I'll buy that before the first pill is swallowed..ha I live in hot TX, so I know about light clothing and tank tops, as well. I remember in my 40's, after my hysterectomy, how I'd open the freezer and stick my face in for a few minutes. Whatever works. Linda

    Ha ... I live in Alaska
    Ha ... I live in Alaska ....opposite of you .... In the winter it doesnt matter, I still need the fan or a snowbank to sit in! GOTTA LAUGH ABOUT THIS STUFF SOMETIMES! Sue D ... take care!
  • lintx
    lintx Member Posts: 697
    Kylez said:

    I was scared of taking tamox
    I was scared of taking tamox too and still haven't and probably never will. I got the pills here at home, but, doubt I will ever take one. I've been doing great without it, and, pray I continue. So many with recurrences took the hormone therapy and it didn't work and there is just a lot that I don't like about tamox.

    You do what is best for you, and, only you.


    Hugs, Kylez

    Kylez
    I know what you're saying, and I've said the exact same. There is so much pressure to try it, so I will do that at the very least. I'm more than afraid of it. I've never been a medicine friendly person! They all have side effects. A friend just went through horrible chemo for 5 mos and thinks I'm crazy for not wanting to swallow a simple pill for 5 yrs. She wished for the option. My Onco didn't want to follow me, unless I agreed to try the therapy. I reluctantly said I would. If I see or feel anything crazy, I'll stop. Several women posting in reply have had good experiences. I hope to be one of them. If not, I'll be jumping over to your team, quickly!! Then I'll have to find a new DR. Thanks for your input. Hugs to you! Linda
  • Kylez
    Kylez Member Posts: 3,761 Member
    lintx said:

    Kylez
    I know what you're saying, and I've said the exact same. There is so much pressure to try it, so I will do that at the very least. I'm more than afraid of it. I've never been a medicine friendly person! They all have side effects. A friend just went through horrible chemo for 5 mos and thinks I'm crazy for not wanting to swallow a simple pill for 5 yrs. She wished for the option. My Onco didn't want to follow me, unless I agreed to try the therapy. I reluctantly said I would. If I see or feel anything crazy, I'll stop. Several women posting in reply have had good experiences. I hope to be one of them. If not, I'll be jumping over to your team, quickly!! Then I'll have to find a new DR. Thanks for your input. Hugs to you! Linda

    I wish you the best of luck
    I wish you the best of luck Linda on tamox and pray you have no side effects. It is always our choice whether we take it or not. I am just one of the ones that chose not to.


    Stay in touch and keep us updated,


    Kylez
  • Attygirl
    Attygirl Member Posts: 121
    lintx said:

    Attygirl
    Mine is in the mail to me. So afraid I'll stare at the bottle for awhile! One person says she takes hers in the evening to avoid hot flashes during the day. I think I'll follow her lead. Lots of great advice on this site. Good luck to you, as well.

    Finally made my appointments.
    Will see MO on Monday morning and have baseline uterine ultrasound same afternoon. I, too, plan to take it at night. Be well!