Topic: Does anyone say no to Tamoxifen

Forum: Hormonal Therapy - Before, During, and After — This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Mar 28, 2009 08:43PM

Posted on: Mar 28, 2009 08:43PM

skippyrcis wrote:

I have been prescribed Tamoxifen by my oncologist.  I am not sure I want to take it.  I am told that not everyone has uncomfortable SEs.  My oncocyte score is a 13.  I have had BM and currently have the TEs.  Luckily I don't have to do chemo or rads.  I just wonder if it is worth the 4% decrease in reoccurance.  I probably sound idiotic for even thinking about not trying it.  Maybe I will wait until Wednesday.  I have my GYN appointment that day.

Dx 1/2/2009, IDC, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jan 23, 2011 09:17AM calamtykel wrote:

Thanks Member - I don't feel that I'm getting increasingly frantic--I'm trying to gather as much information as I can on this medication to make the decision that is right for me.  Tamox isn't in the same class as say, tylenol - it was deemed to be a carcinogen in 1998 by the FDA.  It has been shown to cause not only uterine cancer but also liver cancer in lab rats and other liver problems in humans.  It has also been shown to bind permanently to liver DNA - something other drugs that are processed through the liver don't do.  Every single day for five years is a long time and I need to be comfortable with my decision.    I'm not saying it's not for ANYBODY or even that it's not for me, but this isn't a decision I wish to enter into lightly and I want to be as informed as possible-that is why I posted on both the "bottle" board and this one as well.  
If I decide to go with the tamox, I am still interested in all the alternative therapies.  My naturopath cured my lyme disease three years ago when no other doctor could and he completely cured my six year of a chronic kidney infection - I was told she would need surgery for drainage, etc.  He fixed her in six days -when we went back to the urologist, her urine was completely free of blood and pus.

So as you can see, I do put a lot of faith in natural medicine.  HOWEVER that doesn't mean I've kicked chemical medicine to the curb - I went through an aggressive four months of chemo to prove it.  

I'm just trying to get as much info as possible.  What I do know is that I've had increased dizzy spells over the past four or five days and a ton of brain fog.  Yes, I can treat depression, but I also intend on finding out of this is the tamoxifen.  

"But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!” Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?” Matt. 14:28 Dx 6/12/2010, IDC, 1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Jan 23, 2011 09:30AM Member_of_the_Club wrote:

I hope you don't mind a bit of skepticism.  I know there is a link between tamoxifen and endometrial cancer, though with the current lower doses it is very rare.  I have not heard of a link with liver cancer.  Tamoxifen has been in use for many years, so I think the long term side effects are known (though initially it was given in higher doses and for longer periods than now, so the side effect profile would be greater for some long term studies).  I think all of this is a balancing of costs versus benefits and thats why a conversation with your oncologist is important.  Your cancer profile is similar to mine (though my tumor was much larger and unless they've changed the staging system I believe your positive nodes make you stage II) and for me the potential benefits far outweighed the risks.  Then again, I didn't have bad side effects.  I do urge you again to treat the anxiety and depression if you aren't.  I've seen too many women say "its because of the treatment,"  or "its because I have cancer,"  which all may be true but that still doesn't eliminate the suffering.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jan 29, 2011 03:48PM chevyboy wrote:

Hi Gals, could anyone please answer a question?  I have been on Tamoxifen for a little over a year.  My left ear has been "plugged up" for over 2 months.  I've been to the Primary Care Doc, & she wanted me to try a month of Claritin, the nasal rinses, humidifier, and the prescription nasal spray.  Didn't make any difference.  My ear is "clear"...the problem is in the inner ear...& I'm waiting for the referral to see an ENT....Is it possible it is the   Everything just sounds "muffled"...The PC Doc, said it "could" be a polyp...anyone heard of this?  Thanks....

Don't walk ahead of me, I might not follow. Don't walk behind me, I may not want to lead. Just walk beside me & be my friend. Dx 11/2009, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 9, 2011 03:25PM 07508125 wrote:

calamtykel, i felt the same way when i took tam.  Very spacey and like i was floating.  i called by dr and she told me to get off for a weak and then start back taking it.  i did just as she had told me and it got to the point that i could not function.  I called her back and told her that i had rather be dead than to feel the way i feel.  i got off and it has been 21/2 yrs, with no problems.  i may regret one day not finishing treatment but i could not handle the side effects.  this is a very personal decision for each person but i made my decision and i am living with it.  

Dx 11/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes
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Mar 10, 2011 09:27AM woodstock wrote:

I also felt the same way on the tamox.  After 21/2 months I stopped.  Felt better within the week. I stayed off for 3 weeks and felt great again.  No fogginess, minimal hot flashes, sleeping again, etc. My primary dr said I should consult my MO.  I did and he said that I was imaging the SE.  That my age,(50) dictates that I can only be on tamox and to deal with it.  Not the response I was looking for.  I did restart the pills last week at half dose and and within 7 days, I feel SE starting all over again with some new ones added.My ONCO score was 11 with a 7% chance of recurrance.  Not sure if I will stay on.  Feeling crappy is a constant reminder of BC.


Dx 7/16/2010, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Mar 10, 2011 07:55PM Nokomis wrote:

I was on Tamoxifen.  I began 25 years ago and was on it for 7 years.  At first they said I'd be on it always, but when heavy bleeding began, I was taken off the drug.

I did get uterine cancer after that...2001.

But I feel that the uterine cancer was at least able to be taken care of without much anxiety for recurrence as there is with Breast Cancer.  Of course I was already  61 years old, so it didn't matter about children, etc.

A friend of mine refused the Tamoxifen and had it in the opposite breast about 15 years later.

I'm glad I had the flashes and all!  

The decision, of course, is up to each patient.  I'm just giving my own personal experience.

  Good luck to all who are debating this right now!

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Mar 12, 2011 10:19PM CrazyKitties wrote:

I stopped tamox after 5 months with extreme side effects, I am pre-menopausal. I started on Lupron 2 months ago---I have no side effects except HOT flashes, DUH!! that's what we want!!! And I get migraines, which I had any way. Tamox made me suicidal and more!!! I was afraid of Lupron, and it turned out to be the best thing for me!!! I take Femara now as well-----no problems, I can't believe it!! Try something else, you will be shocked!! My love to you! xoxoxxo

Dx 4/2010, IDC, 1cm, Stage I, Grade 1, 1/20 nodes, ER+/PR+, HER2-
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Mar 12, 2011 10:22PM CrazyKitties wrote:

I hope, sincerely, that when some of you read this, you realize that I had the same issues with tamox. I tried a different route now, and so far, so good. Don't give up.

Dx 4/2010, IDC, 1cm, Stage I, Grade 1, 1/20 nodes, ER+/PR+, HER2-
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Mar 24, 2011 07:10AM angelfromabove wrote:


I am so happy to find this posting.  I has mastectomy in Feb for extensive DCIS, Grade 3,comedo necrosis.  Because deep tissue margin only cleared by half milimeter, surgeon sent me to radioloigist/oncologist to discuss radiation/tamoxifen.  I am 40 and my nodes were clear.  I did not have chemo.  Radiation will damage 10% of my lung so I don't think i'm signing up for that.  So, then tamoxifen was suggested.  Was told I have  a 5% recurrence rate.  I'm not terribly afraid of 5%.  I am much more concerned of all the side effects of the drug to get to the 1% recurrence rate.  Even if a body doesn't have terrible side effects, I feel the drug is still effecting the body in unnatural ways and may do more harm than good?  I totally understand why you didn't want to take the drug.  I am not sure if the beneift (a 4% reduction) outweighs the risks?  I too feel likes its a circular decision and can't make one!  I am right there with you with your hesitation...Suggestions from others/advice is greatly appreciated!  Confused and concerned.....

Dx 1/3/2011, DCIS, Stage 0, Grade 3, 0/3 nodes, ER+/PR+
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Mar 24, 2011 08:25PM Chocolaterocks wrote:

I should have been on this sight before.  Two months ago today was my bilatet masec for my 3.8mm ilc,grade 1 stage 1.... Oncotype 1!! still waiting for the results of my 2nd  vag ultrasound.  Needed to make sure there is no problem before starting tamo and I am still waiting.  I reviewed the 2011 NCCN guidelines which indicate that there is no clear direction on what to do adv therapy is recommended but not agreed upon by all.  I have been on the fence because I am sure whether the risks outweigh the benefits.  So for those of you who are on the fence like me, and think well I will give it a try but will see.  Thank you. My onco wrote me a rx for anti-depressants for my lack of compliance ( my friends laughed, since I am not depressed - yet).

Anyway thanks for letting me vent,


Dx 1/13/2011, ILC, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2-

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