reoccurrences and tamoxifen?

alexlib_mom
alexlib_mom Member Posts: 46
edited March 2014 in Breast Cancer #1
I see in a lot of the posts that people are having re-occurrences. I'm so sorry to hear it.

Can I ask whether or not any of you experiencing this were taking tamoxifen? My dr is recommending it and I have typically gone with their recommendations, but the side effects sound pretty miserable. I'd appreciate anyone's thoughts on this.

Stephanie
«1

Comments

  • chenheart
    chenheart Member Posts: 5,159 Member
    #2
    I took Arimidex for the 5
    I took Arimidex for the 5 years post treatment,and finished it almost 18 months ago. A month ago I was dx with a recurrance, and my oncologist now has me taking Tamoxifen. Who knows?! LOL We do what we can and hope for the best!

    Hugs,
    Chen♥
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #3
    chenheart said:

    I took Arimidex for the 5
    I took Arimidex for the 5 years post treatment,and finished it almost 18 months ago. A month ago I was dx with a recurrance, and my oncologist now has me taking Tamoxifen. Who knows?! LOL We do what we can and hope for the best!

    Hugs,
    Chen♥

    You need to find out if you
    You need to find out if you metabolize tamoxifen I would say. They have a test for that. If you don't, then it won't do you any good. Some say if you have side effects, then you are, and, others say that means nothing. I don't know. Talk to your oncologist about the test and I pray that whatever he prescribes for you will do its magic!


    Good luck,

    Sue :)
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #4
    I started Tamoxifen 4 months ago
    And it hasn't been too terrible. The most difficult side effect for me has been the hot flashes. There are things you can take to help with those, including vitamin E. I do also have just a bit of bone pain, and have been taking Chondroitin and Glucosamine as well as Calcium to help minimize any bone loss. Nothing has been debilitating or even interferes with my ability to enjoy my life.

    Of course it is your choice, and if you're concerned you should talk to your doctor about your cocerns.

    Best wishes,
    Cindy
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    I've taken Tamoxifen for over 4 years...
    The first 2 months were adjustment time....hot flashes, etc...but other than that, I have had no problem. The biggest advantage is that Tami is less likely to cause bone density decline. I am osteoporotic, so this is good. But, there is a higher risk of uterine cancer. But I don't have a uterus, so it's easier for me.

    I had a total hysterectomy during surgery for my rectal cancer. So, I was eligable for any of the hormone-reducing drugs. I have not had a reoccurance.

    The literature with scripts says it all "Your doctor has determined that the risks associated with this drug are outweighed by the benefits to you....."

    Share your fears with your onc...talk it over...knowlege is power!

    Hugs, Kathi
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #6
    tamoxifen
    I was diagnosed in 1987 with Stage IIIA ( and was treated with tamoxifen for 7 yrs (they weren't sure how long I should take it back then). The textbooks at the time said that I had a 75% chance of a recurrence before 5 yrs. I did not have a recurrence for 22 yrs. Now I'm on arimidex and zometa and doing fine again.

    Although I also had chemo, rads and a mastectomy in 1987, I think the tamoxifen is what has kept me going as my tumor is ER+ and tamoxifen was the "new" addition to my treatment at the time.

    Honestly though, I wasn't crazy about some of the side effects--maily being a little tired and having no sex drive at such a young age.

    But I'll take life any day!
  • waffle8
    waffle8 Member Posts: 234
    #7
    tamoxifen
    I am in same boat as you will be seeing the doc. tomorrow for the prescription...It is just another step in beating this bc beast....But the side affects really are enough to make you stop and think....
  • roseann4
    roseann4 Member Posts: 992 Member
    #8
    Hi Stephanie!
    I wouldn't compare your situation to others. The tamoxifen is designed to help keep any cancer cells from growing if your cancer is estrogen receptive. I believe that few who have been "cured" are still on this site because they are off living their lives. There are no guarantees so each of us has to make decisions based on our own judgement with the input of our doctors. I would recommend using every traditioal method available along with every alternative method that makes sense to you. I wish you great health and much happiness.

    Roseann
  • lolad
    lolad Member Posts: 670
    #9
    roseann4 said:

    Hi Stephanie!
    I wouldn't compare your situation to others. The tamoxifen is designed to help keep any cancer cells from growing if your cancer is estrogen receptive. I believe that few who have been "cured" are still on this site because they are off living their lives. There are no guarantees so each of us has to make decisions based on our own judgement with the input of our doctors. I would recommend using every traditioal method available along with every alternative method that makes sense to you. I wish you great health and much happiness.

    Roseann

    Stephanie
    I was totally against taking the tamoxifen because of the high side effect of getting cervical cancer, but yet it was very beneficial for me to take to keep the breast cancer from coming back. I even asked my onc if it was necessary and he said very necessary. Now, this is just my story and how the tamoxifen effected me. It caused me problems almost immediately. They found that the tamoxifen was overexpressing my endrometrial lining and uterus and i developed three tumors. Two tumors were benign, but the tumor the found on my cervix was early stage cancer and my gyn onc said it was probably from taking the tamoxifen in MY CASE!! I had a total hysterectomy and now i dont have to worry about the cervical cancer thing. Just the hot flashes and night sweets and mood swings!!! They are going to be switching my hormone therapy to something else next week. In my case my estrogen was 100%pos and so was my progesterine. So, my onc told me i basically had to take it. Remember, not everyone responds this way to the med. This is just how it effected me.

    Take care
    Laura
  • ecom1479
    ecom1479 Member Posts: 3
    #10
    tamoxifen
    i did have a recurrance but i was borderline stage 4 already. but tamonifen was not that bad to deal with and my aunt who took it is 12 yr and going. i just hit two yr mark. i went on fermera that is a hundred times worse for me then the tamoxifen.
  • ecom1479
    ecom1479 Member Posts: 3
    #11
    tamoxifen
    i did have a recurrance but i was borderline stage 4 already. but tamonifen was not that bad to deal with and my aunt who took it is 12 yr and going. i just hit two yr mark. i went on fermera that is a hundred times worse for me then the tamoxifen.
  • alexlib_mom
    alexlib_mom Member Posts: 46
    #12
    ecom1479 said:

    tamoxifen
    i did have a recurrance but i was borderline stage 4 already. but tamonifen was not that bad to deal with and my aunt who took it is 12 yr and going. i just hit two yr mark. i went on fermera that is a hundred times worse for me then the tamoxifen.

    thanks for all the thoughts
    I really appreciate everyone sharing their experiences with tamoxifen with me and others on this site. I had a very estrogen receptive tumor, so the oncologists suggest going with it and seeing if my body can handle it.

    So that's what we'll do. One day at a time!

    Stephanie
  • New Flower
    New Flower Member Posts: 4,294
    #13
    you need to try
    and see how your body will react to Tamoxifen. Some people do not have side effect or have minimal.
    Take care
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #14
    alexlib_mom said:

    thanks for all the thoughts
    I really appreciate everyone sharing their experiences with tamoxifen with me and others on this site. I had a very estrogen receptive tumor, so the oncologists suggest going with it and seeing if my body can handle it.

    So that's what we'll do. One day at a time!

    Stephanie

    just do it
    Everyone is soooo different. Your body is a unique set of thousands of chemical reactions and no one can tell you what, if any, side effects that you will have. But I would definitely do it in your case. It, in my opinion, is an excellent option that has saved so many, many lives.
  • lovs2decorate
    lovs2decorate Member Posts: 44
    #15
    alexlib_mom said:

    thanks for all the thoughts
    I really appreciate everyone sharing their experiences with tamoxifen with me and others on this site. I had a very estrogen receptive tumor, so the oncologists suggest going with it and seeing if my body can handle it.

    So that's what we'll do. One day at a time!

    Stephanie

    Thoughts on tamoxifen
    Hi Stephanie!

    My tumor was estrogen/progesteron 92% & 94% and was told I would do very well with the Tamoxifen as well.

    I discussed my concerns as far as being able to tolerate taking it with my oncologists. He has me taking 10mg every other day for a month (started 7/4). Then in Aug., I will go to 10mg everyday. In Sept., I will go up to 20mg daily. He is having me come in to talk to him mid September to moniter how I'm doing.

    Maybe you can discuss easing you on it as well if there are concerns of how your body will handle the medication?

    Justine

    I got myself this bc wine glass that was hand painted, I use it every morning with my meds . I figure I may as well take it with style!
  • sal314
    sal314 Member Posts: 599 Member
    #16
    Stephanie...
    Hi. I was diagnosed 8.5 years ago. My oncologist was adamant I take it. I tried and stopped after 6 months because of the side effects. I didn't try it again until a good 3 years later. I figured since he was still buggin' me about it, I'd try it again. I still had side effects, but they didn't seem to be as bad. Amazing how your body changes after a couple of years!
    So, I kept going. I now have 1 more month and I'm done! Whoo-hoo.

    I would at least give it a try. Everyone's side effects are different. Actually, I didn't feel much different until the 3 or 4 month on the stuff. And things just have ebbed and flowed. I'm now having really hot "hot" flashes that I haven't had before. I'm also getting older, so it could be the start of the "real" change.

    Anyway...I know as much as I hated being on it, I gave myself the best chance NOT to have a recurrance! So, I can look back and know I did all I was suppose to do:)

    All that is to say... I'd at least try it. You can always stop it if you think it's not for you!:) (sorry, I'm kinda of winded in my responses!:)LOL.)

    Sally
  • Pinkpower
    Pinkpower Member Posts: 437
    #17
    In my case, being HER2, E&P
    In my case, being HER2, E&P positive, my doctor highly recommended starting Tamoxifen. Since chemo thru me into a early menapause, I was not concern with hotflashes side effect since Im already going thru them, but I was very worried about the cervicle cancer part. my onc said if this was happening to his wife, he would want her to do it. Since I still have both my breast I decided I have to try everything out there to help prevent bc from coming back. I've been on Tamoxifen for a month, so far have only notice still very tired all the time, maybe just havent recovered from chemo, plus Im still on herceptin till Oct. Still having the hotflashes especially at night, severe mood swings, most of the same symtems when I was on Taxatere and carbo. Only new thing I've notice is a very light liquity vaginal discharge. Especially when I 1st wake up in the morning. Sorry for being so graphic.
    Lupe
  • crselby
    crselby Member Posts: 441 Member
    #18
    Pinkpower said:

    In my case, being HER2, E&P
    In my case, being HER2, E&P positive, my doctor highly recommended starting Tamoxifen. Since chemo thru me into a early menapause, I was not concern with hotflashes side effect since Im already going thru them, but I was very worried about the cervicle cancer part. my onc said if this was happening to his wife, he would want her to do it. Since I still have both my breast I decided I have to try everything out there to help prevent bc from coming back. I've been on Tamoxifen for a month, so far have only notice still very tired all the time, maybe just havent recovered from chemo, plus Im still on herceptin till Oct. Still having the hotflashes especially at night, severe mood swings, most of the same symtems when I was on Taxatere and carbo. Only new thing I've notice is a very light liquity vaginal discharge. Especially when I 1st wake up in the morning. Sorry for being so graphic.
    Lupe

    Side effects
    Hi Lupe,
    I had that too, for the first 2 weeks, and I went through a "dry feminine area" at the same time. Go figure. It itched for 2 days, then went away. Now (more than 8 months into it), all that remains are the hot flashes, which are diminished for me by taking Effexor. Good luck.
    ~~Connie~~
  • roxanne53
    roxanne53 Member Posts: 154
    #19
    chenheart said:

    I took Arimidex for the 5
    I took Arimidex for the 5 years post treatment,and finished it almost 18 months ago. A month ago I was dx with a recurrance, and my oncologist now has me taking Tamoxifen. Who knows?! LOL We do what we can and hope for the best!

    Hugs,
    Chen♥

    arimedix and reccurance
    Hello Chen!

    I am wondering how your reccurance was noticed initially?? I am on Arimidex and will be done in November after 7yrs post treatment. I am now experiencing rise in tumor markers for breast cancer. I will be at labs again on Wednesday for the recheck. I am stage 3A and Her2 positive and ER PR positive.

    I hope you are doing better with the tamoxifin.
    Have not seen you in csn chat. Still go in early morning before work.
    I was very saddened to hear you hade this reccurance. DANG

    roxanne53
  • Mariannemm
    Mariannemm Member Posts: 136
    #20
    Pinkpower said:

    In my case, being HER2, E&P
    In my case, being HER2, E&P positive, my doctor highly recommended starting Tamoxifen. Since chemo thru me into a early menapause, I was not concern with hotflashes side effect since Im already going thru them, but I was very worried about the cervicle cancer part. my onc said if this was happening to his wife, he would want her to do it. Since I still have both my breast I decided I have to try everything out there to help prevent bc from coming back. I've been on Tamoxifen for a month, so far have only notice still very tired all the time, maybe just havent recovered from chemo, plus Im still on herceptin till Oct. Still having the hotflashes especially at night, severe mood swings, most of the same symtems when I was on Taxatere and carbo. Only new thing I've notice is a very light liquity vaginal discharge. Especially when I 1st wake up in the morning. Sorry for being so graphic.
    Lupe

    I feel terrible
    I have been on Tamoxifen for about 5 weeks now and the two of us don't like each other! I feel worse now then when I was on Taxol. I have horrible pain in my legs and arms. I have weakness too. If something falls on the floor either I leave it or someone has to pick it up for me. Once I go down it is very hard for me to get back up. I am also so tired I sleep most of the day. I was hoping to go back to work now that I am starting radiation and thought I would be feeling better but I am feeling worse. I have joint pain too that is so bad at night I have to take pain pills to be able to fall asleep. I have been in contact with the onc regarding these symtoms and he has make some suggestions but they haven't helped! I have an appointment to see him on Monday and I have a list of questions for him! He too didn't give me a choice on taking it or not. He said I had to with my type of cancer. I am hoping we will be making some more changes next week at this appt I can't live like this for 5 years. I would rather not take it and take my chances. Marianne
  • kthomasamg
    kthomasamg Member Posts: 4
    #21
    Mariannemm said:

    I feel terrible
    I have been on Tamoxifen for about 5 weeks now and the two of us don't like each other! I feel worse now then when I was on Taxol. I have horrible pain in my legs and arms. I have weakness too. If something falls on the floor either I leave it or someone has to pick it up for me. Once I go down it is very hard for me to get back up. I am also so tired I sleep most of the day. I was hoping to go back to work now that I am starting radiation and thought I would be feeling better but I am feeling worse. I have joint pain too that is so bad at night I have to take pain pills to be able to fall asleep. I have been in contact with the onc regarding these symtoms and he has make some suggestions but they haven't helped! I have an appointment to see him on Monday and I have a list of questions for him! He too didn't give me a choice on taking it or not. He said I had to with my type of cancer. I am hoping we will be making some more changes next week at this appt I can't live like this for 5 years. I would rather not take it and take my chances. Marianne

    Mariannemm
    You sound just like me! I had terrible leg pain and took pain pills at night for them. My legs were weak also and I had a hard time getting up from a squat or even walking without looking funny! The hot flashes were terrible at night. HOWEVER, I have been on it for about 4 months and I have none of those symptoms now! I wasn't sure if the leg pain was residual from the chemo or not but I believe it was the Tamoxifen (I was a couple of months past chemo). So, for me, it was a little rough at first but now I'm not having a single side effect. Hang in there! Karla

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