Does anyone say no to Tamoxifen

Tamoxifen doesn't cause new primaries that are er-, it simply does nothing to stop them.  So if you get a new primary while taking tamox it will most likely be er-.  You would have gotten it regardless.  But you may avoid a new er+ cancer and, more importantly, mets from your original cancer.

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You're right - but only partially so.  It doesn't actually cause new primary cancers to occur...but when they DO occur in those who have been on tamoxifen, there seems to be a significantly higher incidence of that cancer being ER negative in those who have been on tamoxifen as compared to those who haven't. 

Please read this information from following research from back in 2003 - Better yet, read THE WHOLE THING very closely.

http://www.nature.com/bjc/journal/v88/n5/full/6600746a.html

...In this analysis of ER status in CBC patients, we found a greater proportion of ER-negative second cancers in tamoxifen-treated patients than in patients without tamoxifen treatment. The stage of these ER-negative CBCs was more often node positive, but this result did not seem to have a major impact on survival after the diagnosis and treatment of contralateral disease. This finding is in agreement with Rutqvist et al (1991) who Q2reported 47% of ER-negative CBCs during and after tamoxifen use vs 12% in nonusers. In the recent report of Li et al (2001) also an increase was found in ER-negative CBCs after tamoxifen use: 26 vs 4% in nonusers. Rutqvist et al (1991) did not find differences in tumour size or nodal status in the CBCs of tamoxifen-treated and non treated patients. In the present study, the proportion of early-stage CBC (stage 0+1) was slightly, but not significantly (P=0.33), lower in the tamoxifen-treated group (74%) compared to the nontreated group (82%); if a difference at all, sensitivity of mammography (NKI/AvL data not shown) cannot explain this, because sensitivity was 87% in both groups.

BRCA 1 gene mutation carriers have been reported to develop ER-negative tumours more often (Loman et al, 1998). In the present study, no identified carriers were present among the tamoxifen users. Only one of three ER-negative patients of the tamoxifen-users group had a weak positive family history. In the nonusers group, two patients were known BRCA 1 mutation carriers; both had negative ER of first and second breast cancer. Thus the greater proportion of second ER-negative breast cancers cannot be explained by a difference in family history.

Radmacher et al (2000) found more ER-negative tumours in the second and third year of the tamoxifen treatment. And Rutqvist et al (1991) found slightly more ER-negative tumours during tamoxifen treatment or within 3 months after cessation. In the present study, a significant time dependency for ER-negative tumours was not established, but a trend for more ER-negative CBCs was seen 5 years or more since the start of the tamoxifen treatment. This is somewhat paradoxical, assuming that ER-positive tumours, occult at diagnosis of the first breast cancer, are treated by tamoxifen, whereas the ER-negative tumours can grow. In the first 5 years after diagnosis of the first breast cancer, in both treatment groups 21% of ER-negative tumours is seen. But after these 5 years, a difference becomes apparent: of the CBCs in the nonusers, only 10% has a negative ER, whereas 44% of the CBCs in tamoxifen users has a negative ER. This could mean that tamoxifen not only cures but also prevents ER-positive CBCs. This apparent selection of ER-negative breast cancer after tamoxifen use is more surprising as Tarone etal (2002) established that the increase in the incidence of breast cancer after 50 years of age is largely because of an increase in ER-positive breast cancers, while the incidence of ER-negative cancers remains constant..."

Skippyrcis~ this is a excellent source of information on these pages.  I have read on some of the other sites about Tamoxifen took anti-depression pills.  I know a few ladies at work that took Tamoxifen and 1 took anti-depression pills no only for her sadness but for the hot flashes  and was just fine.  Anti-depression pills seem to be a pill for a lot of stuff.  One lady is on them for her back pain.  Maybe you should talk to the Dr...

SkippyCris

Are you seeing a therapist who has experience with young women who have had a BC Dx? Some of the anger may be a physical SE of the Tam and some of it could be about how much dealing with this stinks.

When I was DX in 2002 my breast surgeon had a program where he would match you, by age diagnosis marital status, etc, with someone who had been diagnosed at a similar stage in life, and that person was there as a touch stone and a resource that you could talk to and lean on. It helped me more than a message board (as great as this is) as I was able to reach out and talk to her and ask all the questions that I needed to have answers to.

Also, since you had to try different antidepressants to get to a good place before hand maybe you should meet with a pharmacologist and go over what you are taking and how the tam might unbalance the scales and if anything can be done to reduce your risk and keep you in a good place.

Sometimes our doctors don't really examine interactions and individual body chemistry and just focus on fixing the medical problem that is at hand.

I am so sorry that you are going through this.

Bigapple09 - I just read your post and it brought tears to my eyes!  I live in upstate NY and had gone to Sloan for a 2nd opinion.  Ultimately I chose to stay upstate I think because Sloan stressed me out (the size, all the patients, the drive down there, etc.).  I finished radiation 2 days ago and had an appointment with my onc this morning.  Originally she led me to believe she was going to put me on Lupron to put me into menopause & Tamox.  I wasn't too happy about the menopause thing and questioned her about the benefit as my Onco DX was low risk and I was worried about the menopause thing.  She said her plan was to start with the Tamox and that might put me into menopause on it's own, but if not she wanted to talk about the Lupron in 6 months since I am only 45 yrs old.  I've noticed she's been very cautious which after reading your post I have a new appreciation of!  I don't want to do this again and I'm fortunate enough that they caught it early and I do have options!  My heart goes out to everyone dealing with this.  Thanks for reminding me that I can't take anything for granted.  Start my Tamox in 2 weeks.

Sue

After having total panic attacks about arimidex, I decided to look into balancing my hormones naturally. There are lots of things you can do with no side effects, such as nutrition, weight loss, exercise and supplements such as I3C or DIM, and biodentical hormone replacement. Check out our discussion on the natural girls and the Suzanne Somers threads for more info.

Hi Ladies, there was a post a few weeks back by bigapple about the views on tamoxifen for pre men being different than for post men women.  Does anyone have any info or insight on that?

Sydney 6/ Sue

I'm so sorry that Sloan made you feel so overwhelmed, but i understand it. I have been going there since 2002 and its only in the last year that I am able to sit in the waiting room without blasting my IPOD and pretending I am not there.

I hope the Tam works well for you.

There was just an article in the NY Times about the stats on dealing with cancer one it has spread, I emailed it to my BF for him to show it to me anytime I question the decision I made or feel bad about the BIMX, it was a scary article, but in a way it re-centered my head.

My daughter turned 15 yesterday, and its kind of nice to have done everything I can deal with doing to be here for her next 15 years.

Wendy 

GTS-tamox is usually prescribed for premenopausal women and arimidex for menopausal women, which is what I was prescribed. I refused them both and will continue to do so. There is continuing evidence mounting that these drugs are not any more successful than more "natural means" for early stage survivors like me. I have chose lifestyle changes, including daily exercise, a healthy diet, and many supplements such as I3C, which has been proven to be just as effective at lowering the sex hormone binding proteins as tamox or arimidex. I took a blood test that proved this after a year on I3C and since it is just a plant based substance, it has no side effects. There are other things such as adding iodine and bioidentical hormones that are showing to be very effective at preventing recurrances. Start looking at the other threads here, and all the info out there and you will be surprised at how promising it looks. I think these drugs will be phased out as more and more women refuse to be subjected to the side effects when alternatives are out there. We have nothing to fear, but fear itself. I am fearless!

Kryptonite-one of my doctors has a case study on a treatment he did with one of his patients with I3C and cervical papiloma virus. I know it is not the same as cysts, but you might be interested in looking at his treatment because it enabled a women to avoid surgery:

http://www.drnick.net/index.php?catID=1&pageID=11744

Good luck to you all!

Skippyrcis - 

 I am so glad you started this thread because I too am stuggling with the side effects of this drug.

I am very short (4' 11") and sit comfortably at around 100 lbs. In the past 2 months I have managed to gain 7-9 pounds. I am a Nurtritionists dream when it comes to eating. No sugar, organic veggies galore, and zero processed foods. Yet, I am unable to loose this weight and have had to go out an buy all new pants for work.

In addition to the above I have also had the following:

1. Embarassingly Thin Hair - After chemo it was beautiful, but this stuff has made if horrible for me. I have to spray a powder on the top of my head to hide my scalp.
2. Constipation and Gas at uncomfortable proportions - basically this has screwed up my digestive system.
3. Thin brittle nails
4. Vision Issues - I rarely had to use readers, but on the Tamoxifen, I was always straining and had to buy additional readers to keep all around the house and at work.
5. Muscle Weakness - They told me this was from the chemo. It is not.
6. Decrease In Energy and Motivation
7. Negative Attitude - Quick to Anger - This is not me at all. I am super positve and always cheerful.
8. And a whole host of other issues.

I called my oncologist and complained to him about all of the above. I went into see him on April 9th and have been OFF the Tamoxifen since. He agreed to take me off for one month to see if things would change. Almost immediately, my digestive system settled down, my attitude got much better and my vision improved 100%!!

 The weight has gone back and forth and my hair has not improved. These things took time to happen and will take time to get back to normal.

It is very controversial to go off this drug, but what I have read about it outside of the "medical community" scares me and I have no desire to go back on it. It is AMAZING to find out what our doctors do not tell us. Sadly, the are tunnel visioned when it comes to drugs and know very very little about natural alternative solutions.

 Please stay in touch and everyone else too! It is so hard to find support on this. I have never been a follower just because "everyone else is doing it". I want to do the right thing for me, for by body and my body is telling me it hates this stuff!!

 Smiles and Hugs!

Hi Kyrpto:

I had cysts when i was on the Tam, they were complex cysts, but after a few months my ovo doc figured out that it was an issue of the timing of my TV ultra-sounds, if they were within the first 10 days of my cycle they were there. He said they were ovulatory cysts and that the ovary makes simple cysts which push the ovum into the Fallopian tubes, and that the tam was making mine complex, but they always resolved. To be safe, if he saw one, we always did 6 week follow ups, and inevitable on the 6 week appointment the one he saw would be gone and there would be a new one forming on the other ovary and back and forth etc.

They cyst thing started almost right away for me. My ovo doc also said that there are countries where tam is actually used instead of clomid to induce ovulation, so it seemed to make sense, needless to say back up birth control was a priority as I really did not want to be an octo mamma.

Once I ended the tam (last may after 5 years) vola no more cysts.

And my hair did get thicker again once I was off the tam for about 6 months, it never got thin, but was not as thick as it always had been.

My weight, well its not where I want it, but the truth is I need to move my but a little more, the appetite from the Tam is gone, but until I get moving, I think the extra pounds are gonna hang around

If I had not been ER+ BRCAI, I might not have taken the tam, but it really was my best hope to buy a little time and because of my family and personal risk factors none of the doctors even the doctors I had who were very pro holistic alternative meds were willing to try anything other than protocol on me. Tam can be very hard on a body and it really effects each person differently and with different intensity. I was luck a few cysts, my hair was not as thick and I was blue for a few weeks, oh and crazy hungry, but nothing compared to what some people experience.

I agree with Sussers, you have to be the captain of your own ship, do research, be careful of what info you accept and always question who funded the study or the website and talk to your doc, and if you can't talk to him or her because he/she wont listen, find a qualified doc who you click with.

Sometimes its amazing to realize how many brave women there are in this world and how incredibly strong we all are.

vivre what is I3C and where do you get it? What is the proper dosage?

Lydia,  Here is a link with info on 13C and DIM, I take 200mg of DIM  per day.

 http://www.dimfaq.com/site/breasthealth.htm

Lorraine

Hi Donna!

I have a ton of info on DIM and 13C, I have avoided 13C as it seems from my research that it is unstable and DIM is a lot more potent.  I am on my way to physical therapy oh fun!! however I will send you all of my links later today so you have the full picture.  I have chosen not to do Tam, for some reason it scares me too much, but thats just me.  I didn't ever even try it. I will send the info later, hang in there!

Lorraine ox

I just started Tam on Friday (5/1) 20 mg.   After reading the posts I'm fearful this is too much, possibly I should be on 10mg.   My dr. never went into detail with this.  So far (and it's only been a few days), no side effects yet but I feel like I'm waiting for the bomb to drop.

Is it too early to start feeling effects?   I will also be on a clinical study with Bisphosphates starting soon, anyone doing this along with Tam? 

Sandy