Does anyone say no to Tamoxifen

brendy

I am conflicted about taking tamoxofin I know the positives yet I am afraid of the SEs.

Has anyone read  "Breast Cancer How Hormone Balance can Help Save your LIve?"  By John R. Lee M.D.?  He advocated getting tested for hormone levels with a saliva test and balancing the progesterone to offset the estrogen.  It is difficult to try something more alternative and not have a local M.D. there to monitor the hormone levels.

vivre

Brendy, Dr. Lee is the guru of hormone therapy. There is a lot of info on his website. If you check out the Suzanne Somers thread here, we have quite a long discussion on it, including links and information on testing estrogen levels. This is definitely a good thing to do if you forego the drug route. Those of us in the natural girls area, have found doctors who are testing our hormone and iodine levels, which we believe is important. Rather than rehashing it all again here. Please check out the threads in the alternatives section.

alli62

What are the worst side effects of Tamoxifen????

alli62

I've felt out of control since beginning Tamoxifen in Feb. '09. I, too, already have other issues that I'm maxed out on the meds for that. Sometimes I just can't stand myself, let alone my family around me. I don't know what to do- I can't take any more meds for the SE, and I don't want to stop the Tam. Any suggestions? 

vivre

alli-This is one of the best sites I have found about the alternative to tamox, I3C. Yes it is from a UK website. There is a lot more emphasis on studying alternatives in other countries because the only way a study can afford to be funded in the US is through drug companies. They have no vested interest in funding a study that will Cost them money.

http://www.iconmag.co.uk/page.php?n=1417

marlenet

I have known a few  ladies that have taken Tamoxifen, and all did very well on it.  I have been on it since March 30th and so far so good. Yes I am worried about the s/e but i'm more worried the cancer will show its ugly face  again. My decision to take it is based on if the cancer shows agai i can feel I did everything in my power to prevent it from returning.   As I look back at all i have been through, i was scared of each and every treatment i choose. The chemo has some scary s/e but i managed to get through. I choose to take the tamoxifen because i am only 45yrs.  I have a 16 yr yr old daughter and a loving husband.  I want to be around for them a long long time. My onco told me all about the s/e.  I understand why some may not want the drug, but i felt i had to. 

Merilee

I have been off tamoxifen for  week now. I feel like my old self again. Much more energy. I will get labs on Friday for hormone levels then I will start my DIM, and monotor them regualrly after that.

My DO orederd the tests for me, my ONC just wanted to argue with me about weather or not the Tamonxifen was making me feel poisoned and told me it  was not nessessary to monitor hormones. Hum...Sorry Onc gotta call ya wrong on this one.

Yazmin

lafinlady and lisasayers: I made the same decision for the same reasons.

One thing I just don't understand about the fact that a low Onco-Dx score only counts if one choses to take Tamoxifen: Tamoxifen is supposed to be an estrogen-blocker, right? that's why, supposedly, taking Tamoxifen makes low Onco-Dx recurence-rate accurate.

But there are other ways of blocking estrogen, out there. Like surgery if one choses to go that way (oophorectomy, which blocks estrogen near-completely, while Tamoxifen only works for a minority of people, if you use ABSOLUTE statistics instead of the RELATIVE statistics normally used); and lifestyle (there is no controversy whatsoever in conventional medicine about the fact that exercising reduces estrogen circulation DRAMATICALLY). So how come a Onco-Dx score is only true when Tamoxifen is administered?

Also: I have read somewhere on this Board a post by a usually well-informed participant according to whom the US happens to be one of the few contries where said test (the Onco-Dx) is recognized. And what makes the above theory even more suspicious to me is that Tamoxifen remains Astra-Zeneca's best seller despite the introduction of Aromatase Inhibitors. So......

HelenaJ

Hi all, I was up to 12 weeks on Tamoxifen until I pulled the pin on Monday and stopped taking it.  All was going good until about a week ago and I couldn't function.  Felt so isolated, depressed, heart pounding through my ears, thought all my friends didn't want to see me, doubted the love of my family, including my 2 daughters 7 and 9 years old and couldn't literally get out of bed.  And through it all I just couldn't care less.  Anyway a couple days down the track I am still feeling a little anxious but certainly not depressed.  I saw my Oncologist on Thursday and he was happy for me to take a 3 week break and if I wanted to then try again mid cycle (before I started Tamoxifen the day before my period was due).  He also gave me a script for a low dose antidepressant (Effexor).  That will be my last resort believe me as it is the Tamoxifen making me like this, I am not depressed I am just reacting to the side effects of a drug.

He did however mention that if my BRAC1 & 2 test comes back I should seriously consider ovary removal and possibly no AI's.  Got to say it sounded terribly tempting - no drugs!!!

I know this is a thread for saying no to Tamoxifen but has anyone said no and tried again?

very confused

Helena

vivre

Don't you just love it how doctors get out the pad, give us a script that causes problems, then give us more scripts for the problems their original script caused. We end up a walking pharmacy. A lot of the antidepressants are also estrogen producers, and compound our problems even more. I wish these doctors would look at the research on I3C and stop making women suffer on all these sythetics. I will say it again: if blocking estrogen was the answer, then why does the incidence of bc go up after menopause, when our estrogen levels are lowered naturally? An 80 year old women has a higher risk of of getting bc than a 40 year old. At 80, we produce very little estrogen unless we are obese or eat certain foods that contain phytoestrogens and things like sugar and alcohol that are estrogenic. Our whole systems can be balanced naturally with proper diet, and exercise, and the essential supplements. Yeah, it takes more diligence, but it sure feels great.

KEW

I think our risk for bc goes up over time because we are living longer than out bodies developed to live.  Throughout history, women generally died after menopause, if they made it that long, life expectancy in the early part of the 20th century was 30-40 years.  As life expectancy increases so does our chance of getting more disease. Right, the longer one lives the more likely they are going to get a disease. Also, I would be curious to know if more women in the 80's have ER+ or ER- cancers.  I have no idea. I'm not discounting what you are saying, but today we are dealing with many variables that didn't occur before.  Even those who exercise a lot  are practically sedentary compared to activity levels during evolution and even the last 2000 years.  We have more food available,  our environment is not healthy, and we are under tremendous stress.  I think all of these play a role in bc.  You do need to be careful about stating obese women are more likely to have have more estrogen, that is not entirely true, they may have the potential.  What converts fat to estrogen is aromatase, and like just about everything else in our bodies the amount of aromatase varies, a thin woman may have more aromatase and be at greater risk from her stored fat, even if it is small amounts, than an obese woman who has less aromatase but more fat.  Things are not always so easy.  I know many more thin women with bc than I do obese women.  I am not obese, not even close, so this isn't personal, just an inquiry I made with my onc, because I was worried about gaining weight during treatment, and he took the time to draw pictures and explain it very well.

Karen

KEW

I just finished signing up for a clinical trial that is looking to see if yoga helps reduce SE from breast cancer treatments.  I'm excited to be a part of evidence based research on something that is considered "alternative."  The research coordinator also informed me that there is a study to begin soon on flax seed and hot flashes, I think the Mayo Clinic might be the lead institution for that, but don't call them I may be wrong.  I think it is great the NIH and NCI are funding studies on alternatives because maybe in conjunction with standard treatment there will be a need for less medication for treatment of SE's if the alternatives prove reliable.

Study Title:  URCC U3905, Yoga for Persistent Sleep Disturbance in Cancer Survivors (IRB#06-156A) 

 

Karen

poolgirl

I am saying no. I have tried it and it was horrible. I never even took a full dose of it.That made me so depressed and the fatigue was so bad I was sleeping 16 hours a day. My cancer was small, slow growing, and early stage. I am not going to put myself through that for five years for that tiny cancer. The lord will have to see me through. 

poolgirl

My oncologist just called me back and told me that the cancer will come back if I don't take it. I can't live on this drug. This is the worst thing that could happen to anyone. I just want to be me again. I want to get up out of a chair without pain. I want to stop crying all day long. I want to be able to sleep at night. I want to have enough energy to do my job. I can't take antidepressants and pain pills and be a mother and keep a job. This SUCKS!!

07508125

i am going through the same thing.  I took tam. for 1 month and i thought i was going crazy. i called my onco. and she said to discontinue for 1 month and see how i felt.  i have to called her back next week. i know she is going to suggest that i try again but i just can't.  i am stressing myself out about this whole thing.     

fairy49

Lydia, no offense to your oncologist, but I think it was ridiculous that he said that to you!! There are no guarantees with any of these drugs, people take it, it can come back, people don't take it, it can come back! I hear your frustration and I feel so bad for you! I am praying that you make the right decision for you, I chose not to take tamox and am taking DIM instead, quality of life is huge to me and thats just what I have chosen, stay strong you WILL be OK!

big cyber hugs

Lorraine

vivre

Lydia, what your doctor told you is total BS! I had the same dx as you. After treatments, my statistical probablitlity of a recurrance is 10%. Taking a drug reduces it by supposedly 50% or, 5% in acutality. Diet and exercise reduce a chance of recurrance by 50%. Same stats if you ask me. How can a doctor tell you that he knows for sure your cancer will come back? Only GOD knows the answer to that one. All we can do is reduce the risk. There are lots of ways to reduce risk. Taking a pill, is not THE only way. There are no assurances either way. I refuse to suffer for a lousy 5%, when I can get out and exercise, and eat better and get the same results.

And sorry, Karen, being overweight puts us at greater risk. Yes, thin women do get bc, but I for one fell into the category of women who had gained a lot of perimenopausal weight, especially in my midsection, which produced a lot of excess estrogen. When I look back, I can see how my hormones were out of whack. When I decided to take my health more seriously and get my diet under control, I lost the excess weight. I no longer fear bc will come back, even though I do not take any drugs is because I have lowered my estrogen levels naturally. I have the blood and urine tests to prove it.  A healthy body is able to fight off free radicals. A body that is fed the right nutrients is able to stop cancer cells from growing. This is not just statement, this is fact. There are more studies that back this up, than there are studies that say tamoxifen or arimidex keeps women from getting cancer.

fairy49

amen Vivre!

MarieKelly

Lydia,

If I had an oncologist who said that to me, he/she would immediately be my EX-oncologist. Those are scare tactics to get you to comply with what he wants you to do and that's not the proper way to counsel a patient who is expressing quality of life concerns and questioning the necessity of continuing a treatment option. He can not possibly predict that your cancer will definately return...especially since you've had a mastectomy and your cancer was low grade.  The odds are far greater that you'll live out the rest of your life free of breast cancer.  At least 50% of breast cancers are surgically cured and won't reoccur regardless of whether or not anything further is done in the way of preventative treatment - and that percentage is probably even higher for those of us with small, grade 1 tumors.

Merilee

Your Onc is a baffoon! Sorry but it needed said. Using fear and stressing out a cancer client is very counter productive. I just went off tamoxifen too and my Onc wanted to argue with me about it.  I felt so disrespected.I won't see her again and have the name of another one here in town that I will make an appointment with.I must tell you I am back to myself and feel great.  I started DIM today. My GP will monitor my hormones for me. Don't settle for  that kind of treatment from anyone.

poolgirl

Thanks Guys!! This has really been a struggle to make these decisions. I don't know where I find these people. I feel great without Tamox. and I will order the DIM. I will talk to my GP about it. He is still working for me I hope. I am just so discouraged, I just want to feel good again. Thanks! 

vivre

Lydia-check out the info on the Iodine thread too. This is the final cog in the wheel. It is a key to prevention, and low iodine uptake and thyroid problems go hand in hand with bc.Many of us have completed the iodine loading tests and are supplementing iodine. Keep learning about all the preventitive measures you can take, and you will feel more and more comfortable with your decision to toss the tamox. It is very empowering to feel that I am controlling my health now. And come on over to our natural girls thread. We tend to go off on lots of tangents but we learn a lot from each other.

KEW

Ok--Virve the next time I have a question about human physiology and biochemical reactions in our bodies, I'll come to you instead of  trained doctor.  I'm not going to argue with you the difference between potential and actual--fat stored has the potential to become a problem, when converted by aromatase, and that depends on how much aromatase you have in your body, just like whether or not you can benefit from Tamoxifen depends on your bodies ability to break it down to endoxifen, a percentage of the population can't do that, so Tamoxifen is less valuable to them, in comes the AIs.

At least I'm doing something to move alternative therapies forward by participating in the yoga trial, and hopefully an upcoming flax seed trial.  These are trials that are national in scale one includes the Mayo Clinic, and will result in evidence based peer-reviewed papers, they are not being conducted by big pharma. This is a really good thing that NIH and NCI are seeing the need for research into these areas. Since you are so familiar with all the literature you know there is virtually nothing that is peer-reviewed on flax seed and humans, most of the work has been done, very well, by a Canadian researcher and mice.  I've actually contacted her, she is great.

As far as having hormones monitored, my onc is happy to do that, but that was one of the questions I asked him before I hired him, but seriously you may get more support from a oncological gyn the one who just did my recent surgery had no problem ordering tests, and I'm going to keep seeing her for my regular gyn needs with the benefit that she is an onc too, and understands hormones pretty well.  She may not understand as well as some of the doctors you see, but much better than the average Joe.

Also, I'm a master rower, give it a try, if you want to be in the best shape of your life, row. Before my dx I could military press 100 pounds, and leg press just over 200 pounds.  I went to the gym before work, walked at lunch, and worked out again after work. I commonly hike 10 miles on one of the weekend days. My BMI was 24, but is lower since I've lost weight on Tamoxifen.  I'm looking forward to getting back into my old work out and recreation habits. I don't drink, smoke, do recreational drugs, and I was a veg for more than 20 years, oh and I breastfed my boys for more than a year each, yet here I am. (Also very little sugar, no caffeine, no white flour, no meds of any kind unless really necessary --if I had an infection I would take antibiotics, no Tylenol, no over the counter anything, no drugs during my deliveries, and usually no Novocaine at the dentist--I'm pretty darn clean, yet here I am).

As far as a doctor not wanting to work with a patient who cares?  We are consumers, if I don't like a doctor, or they don't listen to me.  I find a doctor who I have a better rapport with. It isn't different for them, if they feel a patient isn't going to listen to them they have the right to say they don't want to work with that person--perhaps more tactfully than mentioned above, but that person is taking time away from a patient that might have a better working relationship with that doctor. I was terrorized by a doctor who thought I should do chemo, it was a horrible experience, guess what, he is not my onc, but I don't run around accusing all doctors of being flawed because he was a bad match. I didn't feel that chemo was right for me and didn't need his attitude.  So why complain if a doctor disagrees with you? Either be strong enough to work around that, or find one who is a better fit.  Your onc is a long relationship, you better work well together or it will be awful for both parties.

The difference between you and I is that I don't try and talk other women out of doing chemo, nor do I try and talk them into doing Tamoxifen--it is in use for a reason--if you don't want to use it that's fine, I'm not going to use an AI because I think they are much more uncertain, haven't been around long enough, and more problematic than Tamoxifen, but that is MY choice and MY opinion. I just share my story without pointing fingers at big pharma, doctors, etc.  I don't want to be responsible for anyone's choice in therapy, I'll share, but commonly tell people they need to choose for themselves.  I am humble enough to know that I don't have the answers for anyone.

I can't help but wonder what your diagnosis is, since it isn't in your signature.  Since you seem to know so much, you really should know enough not to say that someone's cancer is like yours, or even similar.  I see it here all the time same size, stage, grade, hormonal status, and very different Oncotype scores,or do you discount Oncotype, too? It is all about the tumor biology, and they are different in each of us. My breast surgeon put it well for me one day, she had a patient with a 13cm IDC tumor, who is alive 11 years later, but she has had more than one woman with tumors smaller than 1 cm who were gone quickly- tumor biology.  We, as patients are not equipped to say our cancer is like anyone else's. I think that gives a false sense of security.  We are individuals and so our cancer is individual to our bodies.  There are similarities, that's why there  is a standard of care, but there is a lot of room in there for things to work or not work.

I am so glad that you don't fear bc coming back.  I think that is about the most wonderful place for anyone to be,  I think you have found the path that makes sense to you, has worked for your body, and that is empowerment.  I'm truly glad for you. In the end none of us know until we die of something else years from now, or it comes back, and then we are fighting mets.  I listened and took the suggestion of a woman on the boards who is stage IV to check out their threads as she said many of them were originally Stage 0 or Stage 1, she was right and I was shocked at how many Stage 0 and Stage 1 end up with mets, it was very eye opening.

I wish everyone the best with their decisions and hope we are all healthy and strong for a long time.

Karen

Member_of_the_Club

Oh how I wish keeping my weight down and watching my diet was an effective guard against bc.  I am trim, physically fit and have been a vegetarian my entire adult life.  Never on HRT and the pill.  The thing is, healthy habits help but I will never ever say I can't have a recurrence because of my habits.  Cause the flipside is the idea that women who do get mets must have somehow screwed up.  While there are known risk factors like the BRCA mutation, bc is largely a random event.  And the same is true for mets.  I've known women who were thin and fit and died of bc.

vivre

KEW-where have I ever talked someone out of doing chemo? Where have I ever even commented on chemo? That is one area I do not even go to because I never had chemo, so I cannot relate. Whenever I comment, I always make it a point to say, that we have to make our own decisions. That does not mean I should have to give reponses that are acceptable to everyone. Since this thread is Does Anyone say No to Tamox, I feel I have something to add, since I chose not to take any drugs. When women have terrrible qualms and side effects with drugs, but are afraid to quit, I feel I have every right to tell them that there are alternatives. I once had those same qualms, and it took me a long time to get over the fear that doctors tried to put on me when I said no. I think I have every right to tell others that you can find peace with the decision not to go the drug route if it is as upsetting to them as it was for me. And I really resent your implication that I somehow never had cancer just because I do not post my information. The reason I keep my information personal is that I have found these boards to be very unfriendly to those of us who think outside of the box, as your retort to me evidences. I have been subjected to a lot of malicious tactics by others here who do not agree with me, and I feel it is in my own best interest to not share information with people I do not know or trust. Believe me, If I had never had bc, I would not have anything to do with a breast cancer forum. I would be merrily going about life like I use to, not even thinking about it. But since I DID have bc I will continue to try to help others who may want to look in the direction I looked. If you do not agree with me, that is just fine. But just because you do not, that does not mean I am not entitled to offer my opinion. I will be forever grateful to the women here who encouraged ME to go the alternative route with their success stories. It is because of women who came before me that I was encouraged to look into 13C, supplements, and nutrition.I am just trying to pay it forward.

And Member- When I talk about weight loss as a preventative measure, I am not just stating an opinion, I am stating a fact that is backed up by research. Yes, thin people do get bc, but I have accepted the fact that one of the reasons I personally got bc was because I had gained weight in my 40's and this has been proven to add to the risk. I have read this in sevral books. In fact, I was shocked the first time I read it, because my doctor never mentioned it to me. So in my case, losing the weight is a preventative measure. I believe that losing 40 pounds by eating better, was the most important thing I could have done to keep from a recurrance. And just because someone is vegetarian, does not mean they are not going to get cancer. As you know people can eat just veggies, and still not get all the nutrients they need. Studies have found that vegetarians are often deficient in B12, which is a vital nutrient. Some vegetarians may add too many refined grains and sugars to their diets that are not giving them the nutrients they need. Cancer is a breakdown at the cellular level, caused by a lot of different things. It makes sense to me that strenghtening our cells , by as many different means as possible is the best prevention. If we go back to doing everything we did before, whatever was causing our cells to mutate before, will probably cause them to mutate again. It is for this reason, that I looked at all the things that I think caused MY bc, including excess weight, and I chose to change. Everyone else can choose whatever they want, it is fine with me. I have no desire to TELL anyone what to do. I only want to tell people what I have learned. They, and you, can take it or leave it.

KEW

Virve---I brought up the chemo because I chose not to do it, and that was my choice, but I don't get involved with people making a decision as to whether or not to have chemo. Since I did decide to do Tamoxifen, talking about deciding not to do chemo is the closet experience I have that is similar. I was trying to come from a point of reference. I was probably not clear in my prior message.  I agree I've never read you saying anything about chemo. I never implied you didn't have bc, I just said since you keep your dx private you shouldn't be telling other people that your cancer was like theirs, and I think I explained why I think that is important.  I don't even disagree with you that strongly, and do agree with some of your thoughts.  I just think you are willing to give lots of opinions yet keep your own dx to yourself, so for me, personally that makes me uncomfortable.  I'm sorry you feel as if you are a victim of "tactics" that sounds awful.  I would suggest that you don't let anyone get you down.  I'm quite comfortable with having different opinions and still respecting you or anyone else.  I think you are very passionate and that is a very good thing.

Karen

Britt

Hi everyone -

I just finished rads last Wednesday, have an Onco score of 12, did not need chemo, and meet with my med onco this coming Monday to discuss Tamox.  Although I am still premenstrual (at 52) I have decided NOT to take the Tamox or ANY AI.  Too many side effects.  Also will not get the ovaries out if I do not have to.  Had a CT scan last Tuesday to determine what is going on with ovaries.  Also my endometrial biopsy was negative.  I am a strong proponent of Quality of Life as opposed to Quantity of Life . . . and plan to explore alternative treatments with vitamins, diet, etc. Enough is enough.  Has anyone felt the same?

lbrewer

I am considering not taking it also.  It is so hard to decide!  mY ONCO score gives me a 16% chance of recurrence.  I am having a hysterectomy/oophrectomy next week because of other issues.  I did chemo which they sadi made the 16% down to 8%.  My onc wants me on Arimidex but not really comfortable with that.  But I would think that the oophrectomy would stop so much estrogen production that the hormone therapy benefit would be negligible.

Wish I could find out more! 

Britt

I know - so difficult to decide.  My Onco score of 12 gives me an 8% chance of recurrence if I take Tamox - and there is a question with my ovaries that I may have either a cyst or a tumor on my left ovary, which the lastest CT scan should confirm.  Happy happy joy joy!!!!  I see that you mentioned you are getting a hyst/ooph next week - for similar issues?  I am also concerned about the side effects of that surgery.  Forgive my ignorance, but does one dry up like a prune after ovaries are taken out?  My tumor was also VERY high ER and PR  . . . . so many difficult decisions to make!

Britt

fairy -

Just read your post.  I totally agree with you re tamox.  Please, if you don't mind, exactly what is DIM and where does one obtain it?  Is is part of an alternative/holistic treatment?