Alternatives to Tamoxifen?

Options
catlover44
catlover44 Member Posts: 160
edited May 2015 in Complementary and Holistic Medicine and Treatment

Hello all,

I am 2/3 through with 6 tx of TC, and I know my onc. and my surgeon are going to strongly recommend Tamoxifen, based on what they told me at my original dx.  Thing is, I DO NOT want to take it.  I've had a uni-mast with clear margins, 2 nodes had "footprints" but the ones after them were clean, I'm having the second mast. done whenever I get the all-clear from the chemo.  I would agree to an oophorectomy rather than put my body through 5 years of more chemicals.  I know I'll get an argument about refusing Tamoxifen and MD's tend to poo-poo natural treatments....so I'm trying to get myself informed!  Have any of you made the choice to refuse Tamoxifen?

· Share on FacebookShare on Twitter

Comments

  • Wintermoon623
    Wintermoon623 Member Posts: 119
    edited August 2008

    I am at tx 30 of 35 radiation with 5-8 boosts to follow.  This is after two surgeries (second one to get clean margins...which we did) and 4 A/C, 4 Taxol, dose dense.  I have a prescription for Tamoxifen which I have not filled.  I do not want to take this drug either.  I want to try and balance my hormones naturally if possible.  I know my onc is going to object and my rad onc keeps asking me when I'm going to start Tamoxifen.  I keep side stepping the question. I did the chemo, I'm doing the rads...but in my gut I just have a bad, bad feeling about doing the Tamoxifen.  I know the concensus seems to be "try it" but I just can't bring myself to fill the prescription.

    · Share on FacebookShare on Twitter
  • FEB
    FEB Member Posts: 552
    edited August 2008

    I opted out of hormone treatment, feeling just as you did. It is a tough decision but there are alternatives out there. I advise finding a doctor in your area who will help you balance your hormones naturally. I found a wonderful chiropractic doctor who is monitoring my blood and hormone levels while helping me through the process. While I am post menopausal, and was told to go on Arimidex there are similar ways to handle this. I did a lot of reading. You can check out many of the books that have helped me and others on the forums here. You can also read a lot about what many of us are doing on the alternative care threads. I personally feel that nutrition, exercise, (which has led to my 30 lb weight loss), and the proper supplements have done more for me than a prescription drug. Since my IDC was stage 1, I probably am safer going this route than those who have had positive nodes or margins.  While I would never advocate anyone to make the same choices I have made, I do hope that anyone who is faced with this decision will educate themselves, and do what they feel will make them feel safest. Since taking a drug would only decrease my chances of recurrances by 5%, I did not think it worth the risk. I do feel that the lifestyle changes I have made give me even better odds. As you will find by reading the other threads, Vit D supplements are important and I take indole 3 carbonal which is a naturaly hormone balancer. I also take more supplements, have cut out sugars and junk food, and exercise daily. I feel so strong and healthy. Even my skin is softer and my hair is thicker.

    Just keep searching for the answers, and you will find the one which is right for you.

    · Share on FacebookShare on Twitter
  • anondenet
    anondenet Member Posts: 715
    edited August 2008

    Oopherectomy does have far less side effects than the drugs. There is a study on that.

     But remember the ovaries do produce some thyroid hormone. In the 50s they were getting good results with even advanced disease with oopherectomies and dessicated thyroid supplements. The report was women did best when kept a little hyperthyroid rather than hupo. Today, we would add lugol's iodine tablets. Thyroid hormone contains some iodine.

    · Share on FacebookShare on Twitter
  • SherriM
    SherriM Member Posts: 179
    edited August 2008

    Ditto everything Linda said!  I'm still having chemo, so haven't had to make an official decision yet, but I have no intention of taking either tamoxifen or AI's.   Like Linda, hormone therapy will only improve my chance of recurrance by 5 %, and I feel very strongly that I can more than offset that number with weight loss (6 lbs so far!), exercise and a good nutrition/supplement program. I'm also looking into iodine.  But then, my cancer was stage 1, we cleared margins, there was no nodal involvement, and I'm post-menopausal, so all that is a huge factor in my decision.  Doing these things make sense to me, while wiping out all estrogen and/or estrogen uptake with it's subsequent, cascading side effects just doesn't make any sense to me at all.  Follow your heart...it will lead you true!

    · Share on FacebookShare on Twitter
  • priz47
    priz47 Member Posts: 470
    edited August 2008

    Those who have answered are post menopausal. What abt those of us who are hesitant and are still pre menopausal? I am also researching alternatives to taking Tamoxifen.

    D

    · Share on FacebookShare on Twitter
  • SherriM
    SherriM Member Posts: 179
    edited August 2008

    D, I bumped a thread entitled "iodine link to..." for easy access...lots of good info there on iodine as an alternative tx to tamoxifen or AI, also another the thread near the top "iodine as an adjuvant..."  

    The most frustrating thing, the thing I hate most about bc, is that the decisions we have to make sometimes feels like a crapshoot.......

    · Share on FacebookShare on Twitter
  • priz47
    priz47 Member Posts: 470
    edited August 2008

    SherriM,

    You are so right, it is a crapshoot! I'm trying to decide if chemo will benefit me or not. The onc says its up to me to make that decision. What happened to 'This is the disease, and this is the treatment"? The options are unbelievable to me and we all want to do what is right. I wish I felt confident in all I've been choosing! I do know a unilat was MY choice and I will stick by it. Yes, I have to worry every year, but to keep my one breast is worth it to me! Now, I need to work on my chemo decision and Tamoxifen decision.

    Thanks for the iodine link. I will look it over.

    D

    · Share on FacebookShare on Twitter
  • catlover44
    catlover44 Member Posts: 160
    edited August 2008

    Thanks so much for the info--I'm also pre-menopausal (well, I was until chemo conked out my ovaries....I'm 44 so don't know if they'll come back or not...).  I'll look into the iodine info too. 

    My onc. actually used the word "crapshoot".  So nice to hear that from a medical professional!  I haven't informed her yet that I'm not doing Tamoxifen;  I expect that stern look and some kind of warning, but I want to be prepared (I have about one month until my last !!Laughing!! chemo treatment so that's when the discussion will happen)!

    · Share on FacebookShare on Twitter
  • bmwol
    bmwol Member Posts: 7
    edited August 2008

    anybody here on chemo because of the oncotype dx testing?  I was told when I had my bilateral mastectomies on July 15th (had to go back for bleeder next day and lost 750 ml blood, which left me anemic) that i would not need chemo because I was ER/PR + and HER2 - with no node involvement.  Now, 5 weeks later, I get back my oncotype testing,w hich my docs said they were sure wouldbe negative, that I fall into the low end of the high recurrence rate for testing.  Bingo--now I need chemo.  I'm scared.  I have bad rections to medication.  I'm afraid of what the chemo will do to me.  And I don't want to do tamoxifen, either, but they say I have to.  I've had a history of small clotting (ischemic colon and the current mast) and Tamoxifen's side effect is blood clots.  I also have chronic hives and a bad back and osteoporosis.  I'm 57 and just stopped menstruating last March.  So they dont' know if I'm menopausal or not.

    · Share on FacebookShare on Twitter
  • alittlebird
    alittlebird Member Posts: 30
    edited August 2008

    I had very similar dx info and bilateral mastectomies, though I'm Pr-neg. Originally I was to need only Arimidex, used for postmenopausal ER+ which I was at age 59. Then my OncotypeDx recurrence score came back at 27 and my oncologist strongly encouraged chemo .I was also in shock and cried more over that news than the original breast cancer diagnosis. I finished 4 cycles Cytoxan and Taxotere in mid March, tolerated it well for the most part. I'm back on the Arimidex for 5 years. Ask your oncologist about Arimidex, I think the risk of blood clots is less than Tamoxifen. However, with osteoporosis that may mean you'll need a bone strengthener (bisophosphate) like Zometa which I just began. It's one IV infusion every 6 months. So far no problem with that either though there are some rare but scary side effects. Lots of options to discuss with your oncologist.

    · Share on FacebookShare on Twitter
  • Bliz
    Bliz Member Posts: 507
    edited August 2008

    My sometimes irregular heartbeat has started again with Tamoxifen.  I only take the tamox, twice a week.  On that day and the day after, I have the irregular beat. 

    When I had my six month visit with my surgeon she asked about it, but refused to relate it to the tamoxifen.  I have been previously tested for the irregular heart beat with my cardiologist saying, that it is not harmful and probably hormone related. 

    I love my surgeon, but it is aggravating when they drop a bombshell like, "do you realize you have an irregular heart beat" and then refuse to attribute it to the hormone therapy.  I got the same response when my BP was temporarily high during and after treatment.

    The docs seem oh so quick to negate any side effects and just prescribe another pill or send you to another doctor.

    If it gets too bad, I will probably stop the tamox.

    · Share on FacebookShare on Twitter
  • catlover44
    catlover44 Member Posts: 160
    edited September 2008
    I've been doing more reading, and am still unconvinced to take Tamoxifen.  My onc said she would "fall on her sword" to get me to take it, but I'm not going along (let's hope her sword isn't too sharp).  If anything, I'm thinking strongly of having an oophorectomy and then taking an AI rather than Tamoxifen, since they seem to have fewer life-threatening side effects.  Has anyone done that?  I have my last Smile chemo treatment in 2 weeks (never thought I'd be through with 6 of them!), and I know the subject will come up again at that visit.  I so wish the drs. would also tell us about non-horrible-drug alternatives, but thankfully I'm a big reader.
    · Share on FacebookShare on Twitter
  • saraaa
    saraaa Member Posts: 2
    edited May 2015

    hi there, i was diagnosed with bc 2 weeks ago and was told i have to go on Tamoxifen for 5 years. even the name of this drug sounds like poison!! just curious to c how it turned out w/ u? did u end up taking tamoxifen at last or no. hope u r doing well.

    · Share on FacebookShare on Twitter
  • saraaa
    saraaa Member Posts: 2
    edited May 2015

    hi there, i was diagnosed with bc 2 weeks ago and was told i have to go on Tamoxifen for 5 years. even the name of this drug sounds like poison!! just curious to c how it turned out w/ u? did u end up taking tamoxifen at last or no. hope u r doing well.

    · Share on FacebookShare on Twitter
  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2015

    saraaa,

    The last post to this thread,before yours, was in 2008. The op hasn't signed in since 2011. If you use the search function, you should be able to find more current threads on tamoxifen alternatives.

    · Share on FacebookShare on Twitter

Categories