Does anyone say no to Tamoxifen

rgiuff

I've seen the 2010 NCCN guidelines.  For those of you who have seen the 2011 guidelines, where did you find them?

voraciousreader

Just google nccn 2011 guidelines. Then register for the physicians guidelines.

Luna5

Ilove choc....  I'm catching up on posts while scarfing Dark 85% Green & Blacks Organic Choc.

I don;t know about lobular cancer...but 3.8 mm grade 1 stage 1 with Oncotype of 1 seems really good to me.  You may be able to accomplish anything Tamox might do with Natures Way DIM Plus  and  Melatonin (natural aromatase inhibitor).  So far the only study I've seen (if there is a more recent one...someone please point me to it) is many years old and says Tamox increased the lack of recurrence from 1 in a 100 to 2 in a 100.  "They" called this a 50% reduction in recurrence.  To me it is just a negligible difference of an increase in non-recurrence from 1% to 2%.

Luna5

I get regular e-mails from NCCN.

I signed up a couple of years ago as one of their medical professional options so I could access info which is how I figured out my onco was not up to speed.

Chocolaterocks

Luna 5 _ how cool you are an onco 0!!!! You  beat me- yes it is my understanding that if there are 100 people, 98 will not get a reoccurance and 2 will. If you use tam, 1 person will be spared. My question has been-  and others have said: less stress, lots of exercise.. good diet and good weight..... Dont know anything about dim.... but willing to consider other options.

Regarding NCCN= Annette recommended these guidlines and I accidently printed out 140 pages worth but the bottom line if for my type it is recommended but not strongly agreed on. So I suggest that you all make yourself medical practicioners and access the data.

Luna were you also brca positive?

thanks for the help

I really enjoy dark chocolate

Luna5

Ilove choc...  I didn't have the brca test so don't know.  Haven't had the test because at this point having it wouldn't tell my daughters whether or not they have it unless they do the test themselves.  If I came out positive, it would just mean they should have the test and wouldn't really change anything I'm doing.  I've already cut out all my parts and quit most things that taste great.

Chocolaterocks

Luna

You haved gone through a great deal. It sounds like you have altered your food choices a great deal,

Hang in there.

Chocolate

ScaredInSnoqualmie

Hi!  I am brand new to the board and actually this is my first post... I just had a biopsy and was told I have LCIS. Knowing my family history, naturally, I am freaking out, and I have been on the Internet pretty much continuously for the past 24 hours.  Like you, I like Naturopaths and overall, have been leading a very healthy lifestyle: eating no meat, all-organic diet, no smoking, etc., so, yeah, thus the rage... Tamoxifen was the first thing my surgeon started discussing with me at the very first appt, so Tamoxifen is what I have been researching.  Came across this article:

http://www.all-natural.com/tamox.html

Based on this, I don't want to take it.  Had my MRI today.  Going to be a long weekend, but, I think I have made up my mind: even  if I don't have cancer at the moment, but my genetic test comes back positive, I am going for a prophilactic bilateral mastectomy...

bluepearl

I am considering quiting because of the heart pounding...and I have had two atrial fibrillations in the last 6 years which, if I have one on tamoxifen, could increase stroke. AI's have an even worse profile than this! I have post mastectomy pain syndrome to deal with too and have had some charlie horse's in my feet since taking tamoxifen....who needs more pain? There's a clinical trial going on in Canada regarding metformin (do a search on metformin and breast cancer) so I put myself in the non-placebo group and take a half dose a day...and aspirin and breast cancer, just three baby ones a week have surprising results. Add exercise and a low glycemic diet and hope for the best!

dreaming

I am a long term survivor, the side effects I had with Tamoxifen and Arimidex were hard on me, my oncologist told me that in my case my survival went from 70% to 73%, I opted out.

It was ages ago, I think it depends on each case.

orangemat

I'm taking my chances without Tamoxifen. I'm 49 and have been having hot flashes and other similar symptoms for several years now, so why make it worse? As my husband says, my mood swings and other craziness would be made worse just KNOWING that I'm on a drug, so he fully supports my choice not to take it. It's a very personal choice, and not a one-size-fits-all issue.

sweetcorn

After I completed chemo and rads this year, my med onc wanted me to take Tamoxifen for three years and then Arimidex for 2.  I have friends who have had terrible side effects with tamox, one of whom quit it after six months and did not replace it with anything.  I had been on Evista for a couple of years for my bones and I suggested that I could just remain on that.  He agreed!  I do not have any side effects with Evista and it offers bone protection as well.  I figured that I fought the chances of any recurrence very agressively with the chemo and rads, so maybe I can do without the tamox.

Jane

breastcancerfighter

I am new to this wall.  The reason I got to researching again was because my oncologist found out that I stopped taking the Tamoxifen he suggested I take and was very concerned about me.  I stopped taking it because I don't feel like it is necessarily what is right for my body, plus I had some SE's that were making me feel crazy.  I was reading MarieKelly's first post.  MarieKelly, how are you doing?  I currently see a naturopath here and am trying to do what I can to keep myself healthy.  I feel like I need support with the decision to not take it, because the medical field is pressuring me so much, sometimes I wonder if I am the crazy one for not listening.  Ladies, any advice?

Asya

www.holisticmed.com/toxic/tamoxifen.shtml

Luna5

bump

dropjohn

Tamoxifen cuts your risk of recurrence by half but if your risk is low to begin with it may not be worth it for you - there's a huge difference between a 20% reduction and a 2.5 % reduction.

I went through chemo & radiation; am struggling with the lasting effects of chemo; and have refused Tamoxifen. Quality of life issues are equally important to me as length of life - but I don't have children or a live-in partner; I don't have to suffer.

kal21

 I am close to being on tamoxifen for a year.. I have a foggy mind? I start a sentence and than forget what I was saying.Is that tamoxifen or from radiation? Also I was having a period at 56 but tamoxifen stopped that.. so should i not be on somethng else?

RM2012

kal21, I had the same symptoms, I couldn't think clearly and felt spaced out,  it was really hard as I consult for a living!! I quit Tam after 6 months, and the onc agreed since I had had a bilateral mastectomy, and low rish of recurrence so there wasn't alot to 'prevent' and I had alot of SE's, I suspect I'm allergic to it. Tamox causes a long list of SE's, mine were - brain fog, headaches, liver pain (yes - to a previous post, Tamox can cause Liver cancer), uterine pain, UTI's, and very swollen throat, so much so that I couldn't speak, even if by some miracle I could remember the words.  And the hot flashes, oh my, the hot flashes! They were infernos, nothing like I had before Tamox. My sister went through chemical menopause, and she said my symptoms were extreme compared to what she had (a few hot flashes for a year or so). It's been 2 weeks, and I'm just starting to feel like my normal self again. Peace to all, and be well!

andreamia

Very old post, but has anyone ever experienced cysts on tamoxifen? I had developed three the one month I was on it. Two were complex Very painful. No issues with cysts before tx.

jojo68

I said no to tamoxifen...I am on Dr. Wong's herbal Tamoxifen and doing very well so far

andreamia

Well my cysts have resolved ! Pretty sure it's because I stopped tamoxifen and had a period. I don't think I will be going back on tamoxifen. The 8% chance it's supposed to help with preventing recurrence isn't worth two years of side effects unfortunately At least I gave it a try.

I don't think ill do lupron with an AI inhibitor either. If I have already had kids I would, but I just don't want to keep messing with my ovaries when I still need them. Ugh

WifeWBC

not a very active topic but I though I would throw this question out there.  Are their any premenopausal ladies with luminal B type, or ER + / PR - cancers, ever been told by their OM that their cancer might not respond to Tamoxifen and to stop taking it, or perhaps to take something else?

My cancer was low PR positive 10% high ER 95%.  I am told this is basically PR negative.  I see a few posters on here with ER + / PR - who have used tamoxifen, with varying results.  I am wondering if they ever even had this conversation about tamoxifen being ineffective for negative PR cancers.  That other drugs might be better options.

I start tamoxifen this week.  Wondering if I should be on something else, or even bother taking it if it has no effectiveness.

andreamia

did your onc discuss your adjuvant results with you? This is an online program oncs use to determine the effectiveness of different therapies (chemo and hormone) related to your specific diagnosis. After they enter your information it compares you to others who have had the same diagnosis as you (age, type, stage, tumor, etc). Results are shown as a percentage. For example, for my type of cancer hormone therapy is supposed to reduce my chance of recurrence by 8 percent and improve overall survival by 3 percent. Chemo reduced my chance of recurrence by 20 percent, etc. everyone's numbers are different but it helps give you a better idea of how a certain therapy will work specifically for you. The only thing it does not calculate correctly is HER positive cancers because it does not take into account herceptin yet since it's a newer option. I am HER positive so my onc said my scores should be even better than they gave me cause I had herceptin.

Tracym12

hi--I was wondering if you would share with me how u r doing since diagnosis, having declined tomoxafin?  I am still questioning my decision to not take it...thanks so much...

Tracy

Tracym12

hi? Did you end up taking the tomoxifin?? How are you doing now in 2014?

Thanks for sharing!

tracy

Meow13

Bilat mast only reduces your risk of local reoccurence I thought. It is the distant reoccurence you need to worry about.

rose13me

I am 63 and have had ER/PR positive Her2Neu negative breast cancer. I am finishing my chemo light and am going to decline taking any AI's due to their toxicity. Am seriously looking into Iscador injections which are used in Europe and have been very successful.  Suzanne Somners, who had BC, has been on them for many years and has had no reoccurrence.  Also, I would like to see more pressure put on Big Pharm to put some clinical trials out there on a drug used in Europe for Osteoporosis that has been found to be effective in reducing ER/PR positive BC from reoccurring.  It is called Bezadofilene and sold as Conbriza and has very little toxicity as does Tamoxifin and AI's.  Phizer was experimenting with it at one time and then threw it out to the outrage of many women, probably not wanting to interfere with the existing drugs on the market already here in the U.S. Would love to hear some feedback.

Moderators

Hello Rose,

Welcome to breastcancer.org. This is a wonderfully supportive community, and we're sure that others will chime in soon with their responses.

In the meantime, you may want to take a look at this article about BZA on our main site.

Warmest regards,

The Mods

Jennie93

On this subject, came across this article, kind of interesting. 

http://marnieclark.com/why-i-chose-against-hormone-blocking-drugs/

rosecal954

After looking at all the possible side-effects from Taxmoxifen especially those with the eyes (I already have mild cataracts probably from radiation) I decided not to take it.  My recurrence rate in 5 years without it is about 18%-22% which I know isn't the greatest, but I am willing to take the chance.  I exercise and trying to eat an organic and non-hormone diet as much as possible. Taking Tammoxifen lowered the percentage of recurrence to around 13% (score of 21) This month is my one month anniversary of my breast cancer diagnosis.