Wife says no tamoxifen

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slees21
slees21 Member Posts: 1
edited March 2014 in Breast Cancer #1
My wife is about to undergo chemo treatment #5 out of 6. She is sick of it and wants to feel normal again. She is going to also do six weeks of radiation. She has heard horror stories about the side effects of tamoxifen and is saying she does not want to take it. Does anyone know the increase in recurrence without using tamoxifen? My wife is 36 and had lumpectomy with one positive node, 17 negative nodes, clear margins. She is taking TAC for chemo. Thanks for any info you can provide. My wife does not participate in any forum or support group other than friends and family.

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  • cruf
    cruf Member Posts: 908
    #2
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    Hi! I don't know any statistics but I took Tamoxifen for 5 years and can honestly say, I really had no side effects other than hot flashes! I can understand her fear and this is purely her decision but I would suggest to her that she try it and if she had issues, then stop it.I have since been on Femara then switched to Aromasin and have had major side effects and am looking foward to finishing for good in Oct. Good luck with her final decision. I wish her good health and happiness. HUGS!! Cathy
  • chenheart
    chenheart Member Posts: 5,159
    #3
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    I cannot comment on Tamoxifen, per se, but I do have a similar situation. I too had a lumpectomy, 3 positive nodes, TAC "cocktail", followed by radiation. As my BC was estrogen-positive, I take Arimidex . 1 mg, once a day for 5 years. I started taking Arimidex in 2003. Yes, I too was sick of the regimen, the hairloss, the fatigue...I am sure your dear wife is as well. The difference between us is I was and am willing to take a pill once a day for 5 years to stave off any chance of a recurrence! I had some side effects in the beginning; hot flashes, and joint pain and a bit of neuropathy as well in my fingers and toes. ALL of these side effects have disappeared, I am happy to say!
    I am saddened that your wife is not availing herself of support from other than family and friends. Who has been giving her the horror stories? To be sure, not every drug works for every person, and Tamoxifen is not the only one on the market should it not be the correct one for your wife. I take my Arimidex along with my daily multivitamin, and have been a Survivor, living a full and happy life since my surgery March 29, 2003.
    Perhaps she would be willing to at least START with the Tamoxifen and see how well she tolerates it. Wouldn't it be wonderful if she does NOT have any adverse reaction to the medication, and adds a protective layer as it were to her arsenal of cancer -fighting drugs?
    Should she change her mind about support groups, this site is beyond amazing! Not only is there this forum, but also live chat. Most of us in chat had never been part of a chat forum, myself included. But we are indeed Kindred Spirits~cancer warriors, survivors, caregivers, and friends.Which makes it is open to YOU, of course!
    I hope you and your wife get all of the information needed to make an informed decision. A word of caution. There is sooo much "info" on the Internet, not all of it reputable. This site, as part of the American Cancer Society, falls into a respected and honest site, thankfully. Cancer.gov is a good one as well.
    I wish you and your wife a long, happy and HEALTHY life together....with or without Tamoxifen!
    Claudia
  • Future
    Future Member Posts: 133 Member
    #4
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    Your wife's doctor can probably tell you what the recurrence rate with/without tamoxifen is. I think many of us can understand your wife's feelings, I know I felt like that but I did change my mind once chemo was over and I started to feel decent again. I know it's hard but you may have to wait until chemo is over and she's starting to feel better before you ask her to reconsider or at least "give it a try"
  • newboobs
    newboobs Member Posts: 121
    #5
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    chenheart said:

    I cannot comment on Tamoxifen, per se, but I do have a similar situation. I too had a lumpectomy, 3 positive nodes, TAC "cocktail", followed by radiation. As my BC was estrogen-positive, I take Arimidex . 1 mg, once a day for 5 years. I started taking Arimidex in 2003. Yes, I too was sick of the regimen, the hairloss, the fatigue...I am sure your dear wife is as well. The difference between us is I was and am willing to take a pill once a day for 5 years to stave off any chance of a recurrence! I had some side effects in the beginning; hot flashes, and joint pain and a bit of neuropathy as well in my fingers and toes. ALL of these side effects have disappeared, I am happy to say!
    I am saddened that your wife is not availing herself of support from other than family and friends. Who has been giving her the horror stories? To be sure, not every drug works for every person, and Tamoxifen is not the only one on the market should it not be the correct one for your wife. I take my Arimidex along with my daily multivitamin, and have been a Survivor, living a full and happy life since my surgery March 29, 2003.
    Perhaps she would be willing to at least START with the Tamoxifen and see how well she tolerates it. Wouldn't it be wonderful if she does NOT have any adverse reaction to the medication, and adds a protective layer as it were to her arsenal of cancer -fighting drugs?
    Should she change her mind about support groups, this site is beyond amazing! Not only is there this forum, but also live chat. Most of us in chat had never been part of a chat forum, myself included. But we are indeed Kindred Spirits~cancer warriors, survivors, caregivers, and friends.Which makes it is open to YOU, of course!
    I hope you and your wife get all of the information needed to make an informed decision. A word of caution. There is sooo much "info" on the Internet, not all of it reputable. This site, as part of the American Cancer Society, falls into a respected and honest site, thankfully. Cancer.gov is a good one as well.
    I wish you and your wife a long, happy and HEALTHY life together....with or without Tamoxifen!
    Claudia

    I finished Tamoxifen in March of this year. The biggest side effect I had was fatigue. It wasn't overwhelming...I just learned to pace myself. I must say, being on the back end of treatment, I'm so glad that I did take the TAM. I know now that I have done all I could to survive and live a great life. My energy bounced back within a month after I finished my meds. There can be sexual side effects as well, but you learn to live with them and know you'll be doing your part to survive.
  • cabbott
    cabbott Member Posts: 1,039 Member
    #6
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    Your wife is young for having cancer. Tamoxifen is not the only way to fight cancer, but for years it was the best thing out there to better the odds. My oncologist told me that most of the really bad side effects happened to the older patients (like 55 years old and older). It is a certified cancer causer for the uterus, but it is possible to keep monitoring that to catch it early if that should become a problem. While I was on it I had hot flashes, but it did not adversely affect my sex drive or health. I had some stubborn cysts and eventually had a hysterectomy, but everything was normal. Then I went on exemestane. That's an anti-estrogen that also ups my odds of survival. All of these drugs are useful in increasing your odds of disease-free survival and length of life, but there are other drugs out there if you don't like the side effects of them while you are on them. The idea is to give you a longer life, but that will be worth nothing if you spend the days being miserable. At 36, your wife is very young to have cancer. I personally would stay with an aggressive plan that is based on valid medical research, but she is the one that will have to decide what is best for her. Again, the side effects will be less for someone young like her and her cancer probably needs a more aggressive approach also because of her youth. But if she doesn't like tamoxifen, talk to the oncologist about drugs that might also work with premenapausal women. I am not a doctor, but I know that some are being researched.
  • bratgirl
    bratgirl Member Posts: 5
    #7
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    I understand your wife wanting her life back. I am 33 years old just finished my chemo from breast cancer and now have to do 33 radiation treatments then tamoxifen. When i was at my 5 out of 6 chemos i can honestly say i felt the same way. Tell her it does get better. My last chemo was June 22 and I feel alot better now. Im back to work and everything. Im really tired from the radiation but the effects from the taxotere has gone. Im going to take it, tell her to please take it so there is no reoccurance.....

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