Tamoxifen...HELP

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luna20
luna20 Member Posts: 13
edited March 2014 in Breast Cancer #1
Hello Ladies,
I need some help, of course what else do we come here for. Well I finished my chemo about 2months ago, and have been saying nasty words to the bottle of Tamoxifen that has been sitting there. I am so afraid of it. I heard so many horror stories. I am ER +, and 28 years old. So pretty much this is my only option. So I finally took for straight days of Tamox, and by the 3rd day I woke up and I felt terrible my back hurt, knees, neck, my glands were sore, and a headache. So I stopped for 3 days to see if maybe I was sick, but the first day I didn't take it I felt great again. So I started to hate it even more. I know I need it but I am not sure if its really living you I feel like that all the time. I just need help. I was so positive during chemo and this whole thing, but this is kicking my butt. I am very young still and want to live long, but I am just not sure what to do. It is hard being 28 and sick. I feel 100% physically since chemo. I just don't want to be sick anymore. I have been researching some holistic medicine, if anyone has any advice that would be great. I hope evryone is staying well. I have Faith in God that he will help me make the right decision, I just wish he would talk louder, because right now I can't hear him!!!! God Bless all of you wonderful people out here...

Comments

  • iris48
    iris48 Member Posts: 92
    #2
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    Hi,
    I too am on Tamoxifen and not happy about it. I found a non-profit org that has some pretty interesting documented research material. The website is: www.lef.org. I discovered that the cruciferous vegetable, i.e., brussel sprouts, kale, etc can do what the tamoxifen is doing but instead of at 60% effective at 90% effective. Now since we all can't consume that many brussel sprouts, they have a capsule called: Indole-3 Carbinol and come 200mg. I am in conversation with my oncologist and explained I wish to take this food supplement which enhances the effect (positively this time) of tamoxifen. My ultimate goal is to just take the Indole-3 Carbinol (also called I3C) and not take Tamoxifen. I just don't want to tick off my oncologist, so I am trying to work with him. Look up the website and read for yourself. I decided to join LEF or Life Extensions and its a tax right off. Now I can get better pricing on the I3C instead of $28 a bottle, I got 4 @ $19.50. You take two if 120 lbs, since I weigh more than that I will be taking 3 a day. Another interesting site is: jm@mercola.com
    The is Dr. John Mercola and he writes a newsletter that I get via e-mail. Like all this info, you take it with of salt. He gets pretty extreme in his diet approach but I like some on his ideas. Check it out.
    Lots of warm fuzzies and hugs,
    Iris
  • jmears
    jmears Member Posts: 266
    #3
    Options
    A lot of women on this site mention Arimidex as an alternative to Tamoxifen. Ask your Oncologist. You are very young and I personally believe you should use everything possible to live that long and healthy life! Good luck. Jamie
  • nasa2537
    nasa2537 Member Posts: 311
    #4
    Options
    Please talk to your doctor. It may have been a freak thing that you reacted that way. If it really is the tamoxifen, your doc can help. I've been on it a year, and aside from the hair loss and breakage, and the hot flashes which Vitamin E is helping, I had no problem. But, we are all different, and the docs know that. So, talk to him/her, and let us know what you find out. God bless, Cyndi
  • martiux
    martiux Member Posts: 1
    #5
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    Hi, I have been on Tamoxifen since September 1999 after I finished my chemo and at first I also felt the bone and joints ache, but it passed, now sometimes I'm dizzy, some others I feel like throwing up but I have not stopped taking it not even one day, I am 47 yo and the only real big effect I had is that I no longer have menstruation and have those damn hot flashes day and night, I think I've grown used to them, but sometimes they are so unconfortable.
    I live in Mexico City and have check ups every 4 months with the same Oncologist that did the surgery, I guess this is the only way to keep cancer away. The treatment has to last for 5 years and aftwerwards honestly I don't know what will happen, I can tell you I'm a bit scared of a recurrence, so far I haven't had no problems, maybe because I was on stage 2 when I had the mastectomy, I don't know.
    I guess what I want to say is that is better to take the small discomforts that the Tamoxifen gives you but keep away that big cancer monster.
    God bless you.
  • kim43
    kim43 Member Posts: 4
    #6
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    Hi! I am on Tamoxifen also. I hate it also. My back has been hurting me so bad that I can only clean one room and have to sit down. The pain gets unbearable. After hearing your story I believe it is the tamox.
    I have gained all kinds of weight on it also. I feel as if I could eat all the time. Do you feel the same way? I wish there was another drug we could take. I have had breast in our family and I have had it twice. I have to take it for precautions. My husband doesn't want me to quit on it.
  • monkeyboymommy
    monkeyboymommy Member Posts: 14
    #7
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    iris48 said:

    Hi,
    I too am on Tamoxifen and not happy about it. I found a non-profit org that has some pretty interesting documented research material. The website is: www.lef.org. I discovered that the cruciferous vegetable, i.e., brussel sprouts, kale, etc can do what the tamoxifen is doing but instead of at 60% effective at 90% effective. Now since we all can't consume that many brussel sprouts, they have a capsule called: Indole-3 Carbinol and come 200mg. I am in conversation with my oncologist and explained I wish to take this food supplement which enhances the effect (positively this time) of tamoxifen. My ultimate goal is to just take the Indole-3 Carbinol (also called I3C) and not take Tamoxifen. I just don't want to tick off my oncologist, so I am trying to work with him. Look up the website and read for yourself. I decided to join LEF or Life Extensions and its a tax right off. Now I can get better pricing on the I3C instead of $28 a bottle, I got 4 @ $19.50. You take two if 120 lbs, since I weigh more than that I will be taking 3 a day. Another interesting site is: jm@mercola.com
    The is Dr. John Mercola and he writes a newsletter that I get via e-mail. Like all this info, you take it with of salt. He gets pretty extreme in his diet approach but I like some on his ideas. Check it out.
    Lots of warm fuzzies and hugs,
    Iris

    Hi, I was diagnosed with DCIS in April 2002. I had two lumpectomies and radiation for 28 sessions (which I hated, because I got a nasty burn and on top of that a yeast infection). Needless to say, it wasn't pretty. Since the end of my radiation therapy I have been taking tamoxifen. I too stared at the bottle and felt frightened and apprehensive. I am trying to take the prescribed dosage for the 5 years that they want me to, but my life has been hell. I went into it thinking that perhaps I wouldn't get the side effects, but I wasn't that lucky. Well, I'm on the tamoxifen for 6 months now. As a premenopausal woman, it hasn't been fun. I have been having night sweats, hot flashes and mood swings. My period that was supposed to vanish hasn't, what is worse is that now I am having the worst period pains, mood swings, pms, etc. I am very unhappy. I feel my body changing and I although I am trying to stay with it I find it hard at times.

    I know that a diagnosis of DCIS is nothing compared to some women who have had to have chemo and lost their hair, etc. I have been able to work full time (I have to because I have no choice), take care of my son (6 years old) as a single parent, etc. But sometimes (often) I just don't feel good. Especially during my period. I have never in the 30 years I have been menstruating had such a bad time. My head is all messed up and I can't think, its awful. I realize that I am just complaining, but I am also trying to get information. The five years seems like its gonna be 5 years of hell. I have gained weight and water weight too. Now the doctor has me on Lasix, with potassium every other day. He and I agreed that as long as he keeps giving me bandaids, that I would do my best to keep on keeping on.

    Also, I need to share this, I haven't had any support like a group. Seems that around these parts if you wish to go for a support group you have to attend in the afternoon, not good for me, I work full time. So I haven't shared before. Any info, support would really be appreciated.
  • JAlymer
    JAlymer Member Posts: 1
    #8
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    nasa2537 said:

    Please talk to your doctor. It may have been a freak thing that you reacted that way. If it really is the tamoxifen, your doc can help. I've been on it a year, and aside from the hair loss and breakage, and the hot flashes which Vitamin E is helping, I had no problem. But, we are all different, and the docs know that. So, talk to him/her, and let us know what you find out. God bless, Cyndi

    This is my first visit to CSN, and I hope you can provide me some insight or information. My wife is a 50-year old breast cancer survivor. She had a lumpectomy last fall, followed by chemotherapy and radiation. She started Taxoxifen about three weeks, and in the last 7-10 days noticed that she seems to be losing eyelashes. Is this just a natural thinning of her eyelashes (they came back thick following chemo), or could this be side effect from the Tamoxifen? If it's a side effect, are there other options or alternatives?
    Thank you for being out there, and for any insight you can provide.
    Jim
  • solive1088
    solive1088 Member Posts: 1
    #9
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    JAlymer said:

    This is my first visit to CSN, and I hope you can provide me some insight or information. My wife is a 50-year old breast cancer survivor. She had a lumpectomy last fall, followed by chemotherapy and radiation. She started Taxoxifen about three weeks, and in the last 7-10 days noticed that she seems to be losing eyelashes. Is this just a natural thinning of her eyelashes (they came back thick following chemo), or could this be side effect from the Tamoxifen? If it's a side effect, are there other options or alternatives?
    Thank you for being out there, and for any insight you can provide.
    Jim

    Jim, I have also had the lumpectomy, chemo and now the Tamoxifen. I have been on it for about four months now and I have just started noticing that my eyelashes and eyebrows are thinning again. My lashes had been so thick, almost like little brooms after the chemo but now they are almost gone and I noticed that I can very easily pull out eyebrows. I know you had posted this a while ago but I was wondering if your wife's lashes came back eventually while on the Tamoxifen. I have also been having some strange vision problems as well - intermittnet blurred vision, large "blob-like" appearances off to the side of my vision, dizziness and some nausea not to mention the weight gain. A friend of mine who is 2 months furhther along in treatment for breast cancer has also been having the visual changes. I know that I need to take this medication. I want to be there for my four kids when they grow up so I know that I need to take the Tamoxifen but my hair (on my head) has finally started growing in and I have been searching the cancer sites trying to find out if anyone else is having hair loss with the drug. Have your wife's lashes come back yet? Thanks and I hope your wife is doing better now.
  • PMK
    PMK Member Posts: 1
    #10
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    JAlymer said:

    This is my first visit to CSN, and I hope you can provide me some insight or information. My wife is a 50-year old breast cancer survivor. She had a lumpectomy last fall, followed by chemotherapy and radiation. She started Taxoxifen about three weeks, and in the last 7-10 days noticed that she seems to be losing eyelashes. Is this just a natural thinning of her eyelashes (they came back thick following chemo), or could this be side effect from the Tamoxifen? If it's a side effect, are there other options or alternatives?
    Thank you for being out there, and for any insight you can provide.
    Jim

    Eyebrow and Eyelash Thinning
    After chemo my eyelashes and eyebrows grew back quite thick but maybe not so long as before and I was so delighted. I am into my seven week of Tamoxifen and they have thinned considerably. At first I thought nothing of it but in the last few days it has become noticeable and I am so disappointed to put it mildly. My question is does this reslove after a while and the lashes and eyebrows return to their normal thickness?
  • Mandoleen
    Mandoleen Member Posts: 1
    #11
    Options
    Tamoxifen
    Hi,
    I'm a 3 year BC survivor and have also been taking Tamoxifen for over 2 years. I had night sweats that went away after about 6 weeks and that's pretty much it. I guess I lucked out. I am also premenopausal and was very worried about taking it. But in regard to your dilemma, I think you should try it for at least a month or two to see if the symptoms go away. If they don't and you are miserable then I think you should not take it. Instead, take the Indole 3 Carbinol supplement and adjust your diet as mentioned in another reply. Tamoxifen is preventative not treatment. I know another woman who had BC twice and she just couldn't tolerate it. If you can't do it, you can't. You have some other options so you won't feel like it's the Tamoxifen or nothing. There is no reason to be completely miserable.

    Good Luck,

    Mandie
  • tasha_111
    tasha_111 Member Posts: 2,072
    #12
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    Mandoleen said:

    Tamoxifen
    Hi,
    I'm a 3 year BC survivor and have also been taking Tamoxifen for over 2 years. I had night sweats that went away after about 6 weeks and that's pretty much it. I guess I lucked out. I am also premenopausal and was very worried about taking it. But in regard to your dilemma, I think you should try it for at least a month or two to see if the symptoms go away. If they don't and you are miserable then I think you should not take it. Instead, take the Indole 3 Carbinol supplement and adjust your diet as mentioned in another reply. Tamoxifen is preventative not treatment. I know another woman who had BC twice and she just couldn't tolerate it. If you can't do it, you can't. You have some other options so you won't feel like it's the Tamoxifen or nothing. There is no reason to be completely miserable.

    Good Luck,

    Mandie

    tamoxifen
    I read on BBC news this morning that they have found that tamoxifen is failing in quite a large percentage of women, Seems we build up a resistance to it and it switches off, but they have found the problem. BBCnews, health.
  • JAAL
    JAAL Member Posts: 10
    #13
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    tasha_111 said:

    tamoxifen
    I read on BBC news this morning that they have found that tamoxifen is failing in quite a large percentage of women, Seems we build up a resistance to it and it switches off, but they have found the problem. BBCnews, health.

    Tamoxifen side effects
    After my segmental mastectomy in April of 2008 I completed radiation therapy by Sept. and then was started on Femara. I had terrible joint pains and was actually unable to get out of bed some mornings, and unable to exercise. The oncologist changed me to a similar medication called Aramisin, (probably misspelled). Same side effects. Stopped that and was started on Tamoxifen. Since my sister had no side effects from Tamoxifen, I was confident that I wouldn't either. I have been on it now for about ten months. The only thing I am concerned about is vaginal pain, may be urinary tract infections, or the side effect. At any rate it gets so uncomfortable that I end up in a hot tub, and then take Naproxyn. It is particularly disturbing because I am having marital problems and just cant have any more problems that interfere with my love life. I have a Gyn appt.in Dec. So, hope the doctor can determine something to ease this up. Any one have a treatment that really works with this?
  • Chellebug
    Chellebug Member Posts: 133
    #14
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    kim43 said:

    Hi! I am on Tamoxifen also. I hate it also. My back has been hurting me so bad that I can only clean one room and have to sit down. The pain gets unbearable. After hearing your story I believe it is the tamox.
    I have gained all kinds of weight on it also. I feel as if I could eat all the time. Do you feel the same way? I wish there was another drug we could take. I have had breast in our family and I have had it twice. I have to take it for precautions. My husband doesn't want me to quit on it.

    Tamoxifen and the Munchies
    Hi, Kim! I feel as if I could eat all the time, too. I worked really hard at losing 30 pounds during the initial part of my treatment. I watched what I ate and lost about 1 pound per week. It took about 7 months. In the last 3 weeks I've gained 10 of it back. I've been on Tamoxifen for about 2-3 months. I feel like I did when I was pregnant and had the munchies ALL THE TIME. And my self-control on second helpings has flown out the window!!! It's very disheartening after all the effort it took me to take the 30 pounds off.
    Chelle
  • JAAL
    JAAL Member Posts: 10
    #15
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    JAAL said:

    Tamoxifen side effects
    After my segmental mastectomy in April of 2008 I completed radiation therapy by Sept. and then was started on Femara. I had terrible joint pains and was actually unable to get out of bed some mornings, and unable to exercise. The oncologist changed me to a similar medication called Aramisin, (probably misspelled). Same side effects. Stopped that and was started on Tamoxifen. Since my sister had no side effects from Tamoxifen, I was confident that I wouldn't either. I have been on it now for about ten months. The only thing I am concerned about is vaginal pain, may be urinary tract infections, or the side effect. At any rate it gets so uncomfortable that I end up in a hot tub, and then take Naproxyn. It is particularly disturbing because I am having marital problems and just cant have any more problems that interfere with my love life. I have a Gyn appt.in Dec. So, hope the doctor can determine something to ease this up. Any one have a treatment that really works with this?

    Up-date re side effect from Tamoxifen
    The Nurse Practitioner in my oncology unit said UTI's are not side effects from the Tamoxifin. Just thought I would share that with you all.
  • calico_264
    calico_264 Member Posts: 1
    #16
    Options
    Tamoxifen
    Hi,

    I am also on Tamoxifen and have been for about 5 months now. Haven't noticed too much. Still have the hot flashes that I had during Chemo. I was really scared of taking it also. After the chemical cocktail of chemo, and after being diagnosed with BC, I have become a nut about what goes into my body and about my environment. I love Dr. Joseph Mercola's newsletter as well as a website, www.dtlg.com (Dying to Look Good). There is a lot of information on both these websites that make you realize the dangers that lurk in our everyday lives from cosmetics to laundry detergents to shampoos, etc.

    Has anyone on this forum every heard of a test called a Tamoxitest? According to the website, www.tamoxitest.com, approximately 10% of women taking tamoxifen have DNA that is unable to produce the enzyme, CYP2D6, essential to tamoxifen activation. Another 35% have reduced functioning. This DNA testing identifies both classes of patients. I asked my oncologist about taking this test but he flatly refused to sign off on it stating that there was no other medicine he could offer me. My point is that I really don't need to take a drug that isn't going to work for my body. I don't know why the resistence to this, I would just like to know for my own peace of mind and it is not an expensive test (comparitively).

    God bless all of you and strengthen you through this journey back to health!
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #17
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    sorry such reactions to the med
    I have been on it for just over 18 mths and really only ISSUE for me is thickening of uterus. Night sweats & night leg cramps-

    Recently I did start to bleed after 4 yrs of not (menopause)I went to my gyno -he did more biopsies and all ok..Happy to Say-

    I go back to my oncologist in 4 wks...and see if she changes anything. (had 2 d & c past 6mths)

    I wish I had some advice...keep us updated...

    Denise W
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #18
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    Chellebug said:

    Tamoxifen and the Munchies
    Hi, Kim! I feel as if I could eat all the time, too. I worked really hard at losing 30 pounds during the initial part of my treatment. I watched what I ate and lost about 1 pound per week. It took about 7 months. In the last 3 weeks I've gained 10 of it back. I've been on Tamoxifen for about 2-3 months. I feel like I did when I was pregnant and had the munchies ALL THE TIME. And my self-control on second helpings has flown out the window!!! It's very disheartening after all the effort it took me to take the 30 pounds off.
    Chelle

    munchies huh?
    I must say I have not had that at all....and have been on it for over year and half..

    perhaps it is STRESS...I am opposite-I can't eat when stressed..but could be other way around..

    I wish you luck...

    I LOVED keeping journal.....helped me

    Denise W
  • sal314
    sal314 Member Posts: 599 Member
    #19
    Options
    Hi Luna20...
    I can certainly relate to what you're feeling. I was 35 and pre-menapausal when diagnosed so Tamoxifen was my only option as well. I started it and quit it after 2 months. I then decided to not take it for four years! Then, after being tired of hearing my oncologist more or less beg me to try it again, I did. I was miserable for the first 3 or 4 months again, but stuck with it. All the crappy side effects lessened after awhile. They didn't completely go away, but I was able to just stick it out.

    So...I know it's hard. You can always wait a bit (even years) and then try it again. Or, if you think your up for it, try it again and stick it out a bit longer to see if the side effects will diminish. You can ALWAYS quit it if you can't stand it.

    Ultimately it's your decision. And...I've known several women who have chosen not to take it and are still cancer-free and healthy 15, 20 years later!! It's not a miracle drug. Just because you may decide not to take it, doesn't mean your cancer will return :)

    Blessings,

    Sally

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