tamox.....tamox.....help

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I have been on tamox for about three and a half weeks.  Yesterday morning I woke up incredibly dizzy and disoriented and had trouble walking and with coordination.  I went to the ER - they did a whole workup and found "nothing" wrong.  I felt better during the day and I'm fine now.

But I'm scared.  REALLY scared!  The more I read about tamoxifen now the more scared I am.  The case for liver damage is convincing - this seems far more than just the "hot flashes" that my doctor warned me about. 
I'm 41, ER+ and had chemo.  My naturopath is convinced that tamox is a really bad drug -- I haven't listened to him until my scare yesterday. 
I'm still waiting for my oncologlist to call me back.  I didn't take my dose yesterday or today- I'm scared to. 
I'm otherwise very healthy ---just extremely confused and scared.  I just don't know what to do.  :(

Comments

  • elmcity69
    elmcity69 Member Posts: 998
    edited January 2011

    Call the oncologist today. At best, you might be in for a debate about remaining on the medication, but you deserve nothing less.

    I was on Tamoxifen for a mere 2 months, and it was miserable. Horrible fatigue, weight gain that was almost laughable, and leg cramps that had me in tears. I switched to Arimidex once I had my oophorectomy in October, and it's smooth sailing. Is an AI a possibility (ie, are you having oophorectomy or....?)

    I also see a naturpath, and it's tricky, balancing the different specialties. The ultimate choice on this rests with you, but you need to be comfortable with whatever you choose.

    Good luck. I'm sure lots of the women here will post and give their experiences too! Lots of knowledge and support here.

    hugs-

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited January 2011

    Most of us do just fine on tamoxifen.  it is not a really bad drug, but some women do have bad reactions to it.  Discuss this directly with your onc.  I've got to tell you, the reaction you had doesn't sound like any kind of tamoxifen reaction I've heard about.  Could you have a middle ear infection?  Did they do a brain MRI in the ER?

  • rachel5738
    rachel5738 Member Posts: 920
    edited January 2011

    Hi Cal---I am now on Tamoxifen for a month--I haven't experienced any side effects of any note. All drugs have so many side effects. When I spoke to my onco about the drug--he recommended it for me due to my ER+ status and young age but he did warn that there are side effects that come with it.Hopefully your doc will give you some guidance--and then make the decision that is best for you. I hope you hear back soon. Take care.

  • calamtykel
    calamtykel Member Posts: 1,187
    edited January 2011

    Hi

    They did a CT scan - I was really unhappy about that - more rads.  :(  But since my symptoms could have been mimicking a stroke, they had to try to rule it out.  When I went looking for side effects of tamox, I ended up finding this forum regarding liver toxicity. I feel like I'm being forced to make a decision -contract another kind of cancer or reduce my chances of BC coming back??  At 41, does this really reduce my chances that much?  I thought tamox was mostly effective in post menopausal women.  My oncologlist says no, that it would be highly recommended for me. 

    I'm really active - I do an hour of aerobics a day, and am very into natural foods and treatments.  So this latest thing yesterday was scary to me!  

    http://ehealthforum.com/health/topic100241.html

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited January 2011

    Liver toxicity is a potential issue for any drug metabolized through the liver, including tylenol.  Thats why they test liver function at your checkups.  I've never heard of it actually happening to anyone on tamoxifen so it must be a pretty rare side effect.

    I really think you should give it some more time before you panic.  What you experienced does not sound like a tamoxifen side effect to me, more like a vertigo thing.  Hang on on wait.  If you really are concerned talk to your oncologist, don't dredge up random information on the internet.  I didn't pull up your link since it wasn't hyperlinked but I can tell you that I am an avid runner, did my full five years on tamoxifen, ran many races during that time, and am now (on arimidex) training for my first marathon.  So there's no reason not to continue being active. 

  • Janeluvsdogs
    Janeluvsdogs Member Posts: 242
    edited January 2011

    Wow Calam,

    That was an interesting website you gave http://ehealthforum.com/health/topic100241.html

    What concerns me is, even if you escape liver cancer, if you get a recurrence of breast cancer on Tamoxifen you are more likely to get an estrogen receptor negative cancer. They are more dangerous and harder to treat. It seems a lot of risk for a 3.5% benefit of Tamoxifen.

    I'm sure you will look at the evidence and follow your own common sense.

  • calamtykel
    calamtykel Member Posts: 1,187
    edited January 2011

    I guess what bothers me is that I can't seem to find anything about percentages - what is the 3.5% decrease that you mentioned?  My oncologist told me it was 15% decrease!  I'm totally confused.  If it's only 3 or 4% decrease, then I'm going to seriously reconsider taking it.  I can't seem to find answers. 

    I guess life itself is a "risk" - all foods carry "risks".  I don't know.  I've been through so much emotional and physical trauma these past few months that I can't seem to think straight about anything.  I had to have my port out in a hurry due to infection then I had a bone mets scare which turned out to be fine, and then I found a lump on my collarbone two weeks ago and had to have surgery to have it removed, then had to wait days for the path report.  It was BENIGN thank the LORD ---and then this ER scare yesterday!  I'm just so done - I feel emotionally and mentally scarred by all that has happened to me and I feel like I'm being rushed into Tamoxifen now and after seeing all of this, questioning it.  The fact that tamox binds with liver DNA permanently scares me.  BUT breast cancer coming back scares me too!  

    I think maybe I just need a couple of days to think on it and try to normalize a little bit.  

  • whitbyjet
    whitbyjet Member Posts: 23
    edited January 2011

    Hi-I too had trouble at first with Tamoxifen. Are you splitting the dose? I had to take a 45 day break from it after being on it for a year. During that time my onc put me on an antidepressant which totally has helped with most of the side effects (I still get foot cramps on occasion) I was resistant at first to try the antidepressant, but am so glad I did. It is ultmately a very personal decision, however since you had 2 lymph nodes involved I would seriously consider staying on the Tamoxifen as it also targets any cells that may have strayed.

  • whitbyjet
    whitbyjet Member Posts: 23
    edited January 2011

    oh, and I was 41 at diagnosis, too-Tamoxifen is for premenopausal women and AIs are for postmenopausal women. Tamoxifen is for preventio of distant and local recurrance. But again, I totally understand your hesitation and confusion regarding taking it. Good luck!

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited January 2011

    calamtykel, first to say that I do not believe in any cookie cutter approach. What might work for one person may not work for another. 

    If I wasn't feeling better, I would look for the cause rather assume it is one thing or another.  

    After my second dx of bc, I did just that and went to a naturalpath to see why my body was turning against me.  I learned then that I was hypothyroid and also had Hashi's.

    I've learned a lot in the last two years of research, I'm just now getting the real picture.

    I've learned that our problems can be complex. It's not just one thing that wacks out our body making it susceptible to cancer.

    I've learned after my second dx that I am hypothyroid and have hashi's (thyroid autoiummne disease). There is a lot of information about hashiminto and auto-immune disease connection to breast cancer.  Apparently, a lot of women who are dx with bc also have low thyroids.A low thyroid can cause dizzy spells. I had them before dx of bc. I also had bouts of vertigo this summer. I believed it was caused by candida overgrowth. For whatever reason, my thyroid hormones are still low. I suspect there maybe a connection between yeast and autoimmune disease...not sure.

    Where I'm going, I recently was dx again with bc. When the doctor associate learned that I have Hashiminto, she said that I could not take breast cancer inhibitor drugs (such as Al and Tx). I had no idea before then that these drugs could cause other problems for me (than the general side effects of liver damage, stroke and other cancers). I then wondered, how many women are prescribed these cancer drugs who have thyroid problems. Do oncologist check out our thyroids?

    Perhaps your dizzy spells has some type of thyroid connection. If you did have a hashiminto's and took bc drug inhibitors, maybe this is why you are not feeling well. I don't know...but if I were you I would check it out further.  

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