Time for me to fess up

Well, AmyAm and all, I had to quit Femara last Monday as I was virtually lifeless.  My mind was so sluggish, I dropped significantly in production at work.  Napping became a ritual at lunch time and after work.  Then the waves of nausea hit and it was the kind that makes one crawl into bed. 

 I have a few doc appts scheduled to beg for Provigil to give me the energy to get my day's chores done.  Maybe then, I will try one more time.  As it is now, i have a medicine cabinet filled with tamoxifen, evista and now femara.  This is a powerful drug, that is for sure.  And such a tiny pill.  I am now a firm believer that estrogen is the fountain of youth.

Very interesting info here ladies.

I was on Tamoxifen post double mast, yet still managed to get brain met 14 months later (which I guess doesn't have a lot to do with Tamox as it doesn't get through the blood/brain barrier.

Just saw my oncologist today having just started Tykerb and Xoloda and he said that one of the reasons I am sleeping better and just feeling better in myself is because I am no longer taking Tamox. It sort of startled me that an onc would know how bad Tamox makes us feel, and yet still prescribes it. All I can assume is that statistically it is still more beneficial to take it rather than not.... BUT I fully support you ladies who have weighed up the pros and cons of this medication. Sometimes in life we have to make some decisions for ourselves. I agree that some doctors are seriously STOOPID!!

Good luck to you all.

I have a question what is DIM? I have heard the term alot lately and would like more info. I also quit taking tamoxifen a while back. I just had an oopherectomy Tuesday, I feel the effects of sudden estrogen loss, not fun at all!

Glad to hear of everyone's experiences. I also suffered a lot with Tamoxifen but it took me a long time to figure out that was the reason. It would be nice if someone would warn us! The leg pains and hot flashes subsided after a few months, and I was fine with it, but towards the end of my two years I became really unstable emotionally. Again, I didn't realise it was the Tamox until I went off it (it was planned, since they switched me to Arimidex after two years.) Now that I'm off it I feel healthy and sane for the first time since all this started. The Arimidex also caused very annoying SEs for a while -- mostly joint stiffness, aching muscles, and I was so fed up with feeling like an old lady I was ready to go off it. But I perservered and now all those symptoms are pretty much gone. I guess it's a very individual thing -- we have to believe what the studies say-- that these drugs protect us from recurrence,-- but there is so much that medical science doesn't know about -- like the long-term effects! It all seems like scatter shot therapy.

I refused tamoxifen from the start.  What I read about it, and my own personal history, there was no way I was taking that.  My own choice was what I did and I have never had any regrets.  I can see why someone would want to take it and I could see why someone would not.  I had a lot of grief from women when I said I am not taking the tamoxifen.  If anyone has ever watched Seinfeld when Kramer does the AIDS walk, but dosn't wear the ribbon...that's what I felt like.  So much that I stopped seeking support online.  It was just more of an attack every time I mentioned my situation.  And let me say I also refused the chemo.  The choices were mine, I made them and I have no regrets.  My point is we are still all here, we've all been dx with some form of cancer.  We still need to provide support to one another no matter what choices we have made or will make in the future.  Both sides of the story are great to hear, but support is the bottom line.  I wish us all well. I'm glad this site is here and I'm glad we can share in the ups and downs of all of this.  Aletha..best of luck to you and I hope you stay feeling well!

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Wow!  What a discussion!  I haven't been to this site in a while, but I've been struggling back and forth with this very same issue.  I knew from reading this site before that others had gotten their doc to let them take a break from tamox, so I talked to my doc in early June to take a break.  I talked to her again earlier this month, and she encouraged me to get back on, but really left it as my choice.  So my original question that I was planning to ask is this; For those who have taken "breaks" before, how long can you be off of it and still have it considered a "break" and not just "quit taking it"?  If you've taken a break before and can give me your thoughts on that, I would appreciate it.

I planned to post that question in a new thread, but I think it fits in with this one, so I posted here instead.  When I first started my break, I felt like I had more energy, but now I'm not so sure.  Also, I have noticed my eyes don't seem to bother me as much as they did when I was taking it.  I think this is a tough decision for almost anyone, and there are pro's and con's either way.  I have said a few times before, I should just get off the meds and let my body naturally heal itself, but as someone pointed out to me, isn't that basically what I was doing when I got bc in the first place?  I saw the argument that God put estrogen in my body for a reason, and that is a good point.  But didn't God also put the medical scientists who invented tamoxifen on this earth for a reason?  Spiritually, I believe that God wants me to do my best to preserve my life, I just can't figure out which route that would be, and I know none of you can tell me.  I I keep reminding myself that I know I don't want this to come back.  I know how scared I was when I was first diagnosed, and I can only imagine that to hear those words again would be even scarier.  But, I know from other meds I have taken through years that I tend to susceptible to medicinal side effects, so does that increase my odds of getting blood clots, uterine cancer, or cataracts by taking the tamox?  I'm sure no one can really answer that.  I hate playing a numbers game with my life, but it seems like that's what it comes down to.  I remember saying that I would do everything I could to beat this, so am I a quitter for not wanting to take it?  I know it was such a relief for me when I got the permission to take a break.  Many nights, I just really stressed out about having to take the pill, and it seems that either route I take I will beat myself up if I later find out I made the wrong decision.  I was only stage 1 with no positive lymph nodes so there is a good chance that I wouldn't have a recurrance anyway.  But my tumor was 1.9cm, and I believe 2.0 is stage 2, so I wasn't that far from a stage 2.  I guess I'm just thinking out loud.  We have so many things to consider when we make this decision.

I do have a couple more questions.  Does anyone know if the AI's also have blood clots as a side effect?  I believe someone told me any kind of hormone therapy would.

Also, I was wondering if anyone has read the book, What Your Doctor May Not Tell You About Breast Cancer, by John Lee, David Zava & Virginia Hopkins, and if you've read it what you thought of it?

Thanks for sharing your thoughts.

I know we have discussed this on other threads, but make sure you understand the stats correctly. For instance, in my case, after surgery and rads, my chance of recurrance was statistically 10%. So when they say that the drugs cut recurrance in half, that only means 5% in my case. It seemed to me like a hell of a lot to go through for a measly 5%. I was having all kinds of panic attacks about taking Arimidex, and every time I tried to talk my doctors or nurses about it, they just said, try it. I could not understand why and since I never got a straight answer, or had the side effects fully explained, I decided not to go the drug route. I was already feeling great with all the supplements I was taking and my improved diet so I felt I was on the right track. I had very little effects from rads, and I know it is because I was eating right and exercising. That was proof to me that there is another way. Like many of you, I just could not understand why getting rid of all our estrogen is the answer. We are woman. Woman have estrogen. Yeah, it is a major factor in BC, but so is the excess fat I had that was producing the excess estrogen. I decided to get rid of the fat instead of take the drugs. I was having such a hard time with the idea of taking a drug that affected my bones, my memory, and my heart. Then when I saw Arimidex being used as a steroid by body builders,  I really freaked out. I studied steroids in athletes and I know how bad the long term effects can be. Arimidex has not been around long enough for a study on the long term effects.

I know that when they do their studies, they rarely include diet and exercise as part of it. So I don't always believe that the stats are reliable. I wish there was someone who would start a web site for those of us choosing alternatives, where we could go and put in our info, and do our own study. There isn't any money in it for anyone, so no one else will.

And I would also like to encourage you who are going the natural route to take indole 3 carbinol. My holistic doctor swears by it. I don't understand all the specifics, but it basically inhibits the bad estrogen and builds of the good, as opposed to the SERMS which totally block estrogen. Plus it is a lot cheaper, and I have not noticed any side effects. It is the active ingredient in DIM.

Sorrry, for the long ramble. Many of us are very passionate about this issue on both sides. We each need to hear from both sides, weigh the pros and cons, and do what we feel is personally right for ourselves.

I am one of those crazy? people who turned down advjunct chemo.  I have learned that saying that usually is followed by stunned silence, and people changing the subject.  It seems to be taboo to admit that in any forum.  There must be others out there who made that decision, and I'd love to hear from them, especially if they are long term survivors because the OncotypeDX statistics had to come from somewhere.  According to all the guidelines, I should have had chemo followed by a year of herceptin but to me, the risks far outweighed the benefits.  I had a bilateral mastectomy with immediate reconstruction with the gummy bear implants.  I had clean lymph nodes, and no evidence of vascular spread, and a higher risk of cardiac issues due to other health issues.  Even the short, easy recovery time after surgery showed me that I don't do well as an invalid dependent on others, and that I wanted to avoid that if I could.  I knew that my immune system had been compromised due to stress and fatigue during the year before my diagnosis, and I felt strongly that losing weight, repairing my immune system rather than destroying it, and taking Tamoxifen to ward off any escaped cells from my highly estrogen driven tumor rather than delaying it for more that a year until after chemo and herceptin is my best bet for a long healthy life.

My experience taking the Tamoxifen has not been a big issue for me...most of the side effects I've gotten, like the hot flashes, lighter and unpredictable periods, headaches that seem more intense and painful than before (though not more frequent or unexplained) and more intense PMS are things that I would have expected to happen in the next few years as a result of menopause anyway since I am 50. 

I saw my sister-in-law stop taking the Tamoxifen that she had been on in a clinical trial shortly after it became FDA approved, and suddenly went from being provided to her for free as part of the trial to costing hundreds of dollars a month that she couldn't afford.  I think of her every time I get that prescription filled and only have a small copay and wonder if she would still be here if she had been able to continue on the medication instead of having to choose between feeding the family or filling her prescription.  A few years after she stopped taking it, she developed a recurrence that had spread by the time it was discovered.  The Tamoxifen seems like my best chance for a future with NED, so at this point, I'm embracing those side effects as a sign the stuff is working. 

Until the time when someone comes up with a definitive "cure", we each have to cobble together what we believe will be the most effective treatment that we can live with, not merely survive. 

I was 41 when diagnosed with IDC in Oct 05, 4 cm tumour, grade III and 3 positive lymph nodes.  As far as treatment I had a lumpectomy with clean margins, 6 months of chemo (a/c and taxol - 8 treatments), 5 1/2 weeks of radiation and then 1 1/2 years of Zoladex injections along with Armidex.  Two months ago I got my ovaries removed at age 44 so that I could remain on Armidex and not to take Zoladex injections anymore.

With my stage at diagnosis, cancer being invasive and my age I didnt feel I could risk not taking Armidex to hopefully prevent a reoccurance.  In the beginning when I first started the drug I never dreamed I would think about quitting it, but somedays now the thought is a "fleeting thought" and then goes away.  I am too chicken to not take it....The side effects has been hotflashes, tiredness and very disturbed sleep despite taking a sleeping med.  I do have some achiness but not too bad with taking Glucosimine three times a day.  The one s/e that drives me crazy is my short term memory is shot, I cant remember anything....in one side of my brain and out the other...

Some days I wish I didnt have to worry about this breast cancer crap and what happens once the magical 5 years comes up.  I wish these drugs would come with a "no cancer return guarantee" for all the s/e's that we have to put up with but I know that is just wishful thinking on my part....

For those ladies just starting out on the hormonal route, please give them a try as everyone is so different in how they react to the meds.   With all that has been said I am happy that there are a few drugs out there to help prevent reoccurance.

Michele 

I finally had the tamoxifen metabolizing test and filled the 5 month old prescription.  I was really hopeful, but reigned myself in to trying 1/2 a pill a day. 

The first day was fine.  Day 2-I started getting jumpy.  Day 3- I was ready to flip people off. By Day 4, I said that is enough. 

I might try the 1/2 pill every third day as others have or I might just say, "Adios" to the anti-drugs. 

I had already led a very healthy lifestyle and have since upped the organic food and supplements.   Also take DIM.

Hi everyone..i took Tamoxifen for a year and then Arimidex for almost four years...then I had just had enough already...that was two years ago now...keeping my fingers crossed..my onc tried to persuade me to do more, but I do not think that more is necessarily better!!!

I have been on tamoxifen for 7 months.  Usual SE, hot flashes/night sweats/lower back pain but now I am starting to get pelvic pressure so I am going for a endometrium biopsy.  After my rads, I decided to give Tamoxifen a try but I am not too sure I made the right decision.  After my biopsy, I am seriously considering stopping it.

Sorry I meant August 2014 i crashed after steroid

I am one that decided not to take Tamoxifen. The thoughts of all those nasty SE and who really knows if you do take tamoxifen there won't be reccurence .