on tamoxifen 1 month, going crazy help

So is there anyone out there taking tamoxifen and not having problems? I am suppose to start soon. What are the other options? I have appt with ongologist to get prescription and will talk to him too. All this is so scary!  I hope those of you having problems find relief very soon!!!!

I took Tamox for 8 months.  I was depressed, angry and anti-social. I had gained almost 40 lbs (since dx, surgery, chemo, etc...) and had absolutely no energy.  I stopped taking tamox after my first post tx appointment (had finished 12 months of Herceptin) and started feeling better, emotionally, almost immediately.  I was also able to think more clearly. 

In Oct I was dx'd with a new cancer (Thyroid), had a partial thyroidectomy and started taking natural supplements.  I am so tired of cancer and all the gifts that it brings,

I  just saw my onc a few weeks ago and had to tell her I quit taking the tamox.  She was very upset with me. The first thing she did was pull up the online tool and advise me that without tamox I had a 11% change of recurrence, with tamox my rate of recurrence would drop to 6%.  I asked her if those figures included the fact that I had a year of Herceptin and she said 'no' we don't have statistics yet for early stage bc and Herceptin. I think she is more worried that I am going to skew the trial results for the clinial trial I am on  then she is about my quality of life. 

I do not believe that 5% decrease in recurrence is worth living with the depression, aches and weight issues.  I am at peace with my decision to stop the tamox. My husband and family support me as well in this decision.  I am now trying to lose weight, improve my diet and exercise as a way to fight recurrence.  I am also researching bio identical hormones and finding a way to balance my hormones naturally rather then depriving my body of hormones that it needs to stay healthy.  

robyn - I had heard an interview by the author of 'Hormone Harmony' on one of my FB support group forums.  I was really intrigued by what she had to say about bio identical hormones  and BC. I looked up a physician through a website she recommended http://www.bodylogicmd.com/

I am saving up for the initial consult and lab work (they run saliva, urine and blood tests to determine where you are hormonally and have a compound pharmacy on site). The initial appointment in my area is....gulp...$395 and it is not covered by insurance.  I was never real big on alternative medicine (my mom is very 'alternative' and had really turned me off).  However I am now more open. We actually found my thyroid cancer through thermography since I wanted some kind of scan to verify my onc's NED dx and she would not order a PET or CT scan. 

I think the dx of thyroid cancer immediately after finishing BC tx really made me sit up and take notice that maybe I should be looking at a more natural approach, I'll let you know how it goes. My 40th birthday is next week and I plan on being around another 40+ years

Hi Letlet:  I'm so sorry that this board scared you but please know that the SE's we have experienced happen to a very small % of women.  Please give the medication a chance...the odds are on your side that the med won't be a problem for you.  If it is, you can always decide to stop taking it or try taking a med to counteract the SE's.

Crazykitties, I completely related to your comment about menopause going on forever.  I'm 53, going to be 54 next month, and I'm still getting my periods regularly.  My ovaries are just chugging along and don't want to stop.  Like you, I know someone who got her period til she was 58.  My goodness though...60!  That's a long time.  

Di

Letlet- My SE's from the tamox were not 'horrible' I am just choosing to look at alternatives since I have been dx'd with a 2nd cancer (thyroid). The thyroid and our hormones work in a delicate balance and I feel that I would benefit from looking at a more balanced approach.  There are many, many women who have little to no SE's on Tamoxifen.  I think that on this thread you will find more negativity as we come here to commiserate and talk about alternatives.

MHP70 -  I am not sure what your specific markers/dx is however many statistics come directly from the research provided by the manufacturer of Tamoxifen. So if anything, it may exaggerate the benefit and downplay side effects.

You can go to this site  http://breastcancerchoices.org/tamoxifen which explains how the manufacturer's studies came up with the numbers.

or here where they just give you the numbers http://www.druginfonet.com/tamoxfen.htm

I found both to be helpful in making my decisions regarding risk/benefit re Tamoxifen

edited to thank and acknowledge mathteacher for the links to these studies

Thanks for those links, they were interesting.  These findings pre-date Oncotype, which is a good thing for some of us, and not so good for others.  The survival reviews were everyone lumped in, regardless of genetic idiosyncrasies revealed now by Oncotype for ER+ patients.  How Oncotype arrives at a "50% reduction in recurrence" by taking adjuvant hormonals is a mystery to me.  It's also totally odd to me that it would be straight across the board--equally effective in those with high and low Oncotype scores.

If we use some common sense, the answer is probably somewhere in the middle.  Tamoxifen probably gives me somewhere between 3.5 and 8% advantage over 10 years.  But there is another factor, and that is Tamox/AIs also are preventative in new primaries.  And unfortunately, BC patients have a whopping cumulative 1% a year risk of a new primary. Everyone's so focused on recurrence they often overlook that little secret.

Robyn to give you a pointer what to research before you meet the oncologist next week, the likely alternatives to tamoxifen which the onc may suggest in combatting oestrogen, are Arimidex or other Aromatase Inhibitors (AI's) combined with a monthly injection to suppress your ovaries temporarily I think that's called Zoladex, or else knocking out the ovaries permanently either by surgical removal (oopherectomy) or destructive radiotherapy (ablation). I willing to bet a silver sixpence he won't mention any natural ways to reduce your oestrogen, but that's the course I personally have chosen - diet & exercise. My feeling is that any synthetic way to reduce my body chemistry, will have the same effect that Tamox had on my brain. Even if i get a recurrence doing this i still won't regret having fought to get my brain and my quality of life back. But that's just my pig-headed choice. If you're interested, have a look at the Natural Girls thread and the Alternatives & Complementaries area. Also if I do now get a recurrence, i figure it's likely to be ER+ again, whereas any recurrence you get while on oestregen blockers is much more likely to be ER- and harder to treat. Just my disordered thinking!

While I'm generally of the mind that diet can't keep us from getting cancer in and of itself, I do believe exercise is super-important.  I'm trying to do physical activity every day, has anyone else found fitting it in difficult?  I am really trying.  1/2 hour a day, nothing crazy.  Just something:  walking, swimming,running, biking, weights, pilates.  The studies seem to indicate that cardio (that usually won't include things like yoga and pilates) regulates hormones.  It also does a million other great things.

If I had to step off Tamoxifen, I would feel like I was doing something protective with exercise.  I'm not convinced that cutting all sugar and alcohol, for instance, is going to cut it.  I was a long-term vegetarian who ate pretty incredibly for 20+ years.  Sadlly, that didn't seem to help when compared to the life I've lead (exposure to 9/11; grew up in worst toxic landfill nationally--perhaps these were part of the trigger).

and Robyn, good luck with the onco. The cynic in me says they push pills because there is profit in them and because they don't beleive you will stick with the exercise diet thing. Feels like If it works for more than 50% of patients they prescribe it for nearly all and maybe 40+% of us might be really struggling for no benefit.. Well, if I know that I personally will struggle to a level that stops me personally from functioning the way I need to (and he hasn't seen the dire state of my house, had to live with my moods and outbursts or heard the latest opinions of my boss!) then I can make a choice for the one that matters to me, which is me! I see mine again in a few weeks and I just KNOW he will say, And now lets talk about stamping out these hormones of yours....,. Well i decided i don't want to be part of their big experiment, I know how i felt before and Im not going there again. But do give it a fair lookover before you reject a drug that does work for some poeple.

Hallo Chevyboy! Yeah, I found the other thread and it's 348 pages long, I can't even find my own posts there! Glad to see there are so many women over there doing so well on this drug though, we may well be in the minority, struggling here. Tamoxifen doesn't have the same effects on all of us, and for some the mental side-effects of knocking out the natural hormones is just unbearable. Maybe the AI's woudl be less bad in this respect who knows, but Robyn and I and several others here are too young for them without additional messing around; you can come back to tamoxifen but we can't get forward to the AI's. Tamoxifen may feel gentler for older ladies and I respect that and am very glad to hear it, but it runs chaos through your hormones if you are premenstrual. That's partly why I take my approach that if i do get an ER+ recurrence well i will probably be post-men by then and less upset by tamoxifen.