Does anyone say no to Tamoxifen

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  • 07508125
    07508125 Member Posts: 33
    edited May 2009

    Thank you I am really interested in this.  I just can not do the Tam thingy.  I

  • fairy49
    fairy49 Member Posts: 1,245
    edited May 2009

    Good Morning Ladies! Anyone interested in hormone balance etc should read this link, its long but really fascinating! I was doing a ton of research this past week, and it seems the 2/16 metabolic ratio is crucial, DIM does this naturally without the side effects, scientists have known and worked with DIM for over 25 years, in the UK they have started human trials with DIM and European docs are very excited about this supplement, its just a long time coming!

    http://www.metametrix.com/resources/content/LearningCenter/Articles/Estrogen_Metabolism.pdf

  • Merilee
    Merilee Member Posts: 3,047
    edited May 2009

    This was a good article.  Have you found anything that was published more recently.  I noticed that one was from 2002. I am sure they have done more research since.

    When I asked my ONC about 13c her concern was for my liver enzimes.  Anyone on it having trouble?

  • fairy49
    fairy49 Member Posts: 1,245
    edited May 2009

    Hi Merilee!! I do have a ton of info on DIM, if you have an email PM me and I will send to you, I don't take 13C as I have read it can be unstable and DIM is a lot more potent.

    Lorraine

  • Merilee
    Merilee Member Posts: 3,047
    edited May 2009

    Thank you Fairy that was a good article and was not part of an add like much I have seen.

    How long did you say you have been taking DIM? And are you on Tamoxifen also?

    I have to wonder also why the dosage stays the same for a woman's cycle when estrogen levels peek and wane during the month.  Just a thought... seems like birth control pills adjust for this but tamoxifen does not.

  • fairy49
    fairy49 Member Posts: 1,245
    edited May 2009

    Merilee, thats exactly why I liked it, I get a little leary of some of the links as they always end up trying to sell me! I have been on DIM for 5 months, no I am not taking tamox. Tamox started out as birth control many moons ago when first discovered, until "they" realized that it stimulated the uterus, therefore not good for preventing pregnancy!  I am not sure honestly why dosage remains the same, I am assuming you mean the dosage for tamox right?

  • Merilee
    Merilee Member Posts: 3,047
    edited May 2009

    Fairy49 

    Yes I am referring to the Tamox.  About half way trough one's cycle is when we have the highest estrogen, then it tapers off.  It would make sense to me tht the tamox should be adjusted accordingly.

    Did you do any chemo?

  • fairy49
    fairy49 Member Posts: 1,245
    edited May 2009

    Merilee, that makes total sense, unfortunately its a "one size fits all" thing with tamox, the dosage isn't even adjusted for weight which makes no sense, I have a hard time with the idea that a 20mg dose should be used on someone who is 100lbs and then on someone who is 150lbs and so on, my onc actually agreed with me on that, however its standard protocol, so he couldn't officially advise taking less, but he did ok me to take 5mg if I wanted to.......I didn't do chemo, my oncotype scores were low and being 100% ER and PR+ "they" say that chemo isn't effective for ER positive tumors, or at least that is the new thinking which sucks for everyone who had chemo and didn't need to.

  • gertrich
    gertrich Member Posts: 1
    edited May 2009

    I had breast cancer and was advised to take tamoxifen and refused to do it.  I take turmeric(curcumin which is a herbal supplement) to block the estrogen,  1700mg a day,  plus selenium 200 mcg, resveratrol, Shakee calcium, D3, Shakee multivitamin, flax oil, vitimin B and some other supplements.

    I was not sure what I should take and read about the turmeric in a health book.  I was taking 1 pill with 400 mg and noticed a hardening in my breast.  It was checked and said to be scaretissus.  Immediately upon finding the hard area I found out how much I could take and increased it to 1700 mg and the hardening area has become smaller. 

    I am willing to try alternative supplements to keep from getting the side effects.

  • vivre
    vivre Member Posts: 2,167
    edited May 2009

    Gertrich-that was interesting about the scar tissue and the tumeric. I too take tumeric and I have read everywhere about it's value. Thanks for the input.

    Does it bother anyone else but me about how much they seem to scare us into using tamox or arimidex? I still cannot get over the fact that they are so adament that this drug will keep us cancer free, when so many other things have proven just as beneficial that have no side effects. I hope that someday, those of us who are choosing not to go the drug route, will band together and prove them all wrong.

  • Susers
    Susers Member Posts: 36
    edited May 2009

    Merilee and Sandy2009

    I took about 9 months for my side effects to finally kick in at full steam. I was just fine and then wham!

    I am on a Tamoxifen vacation right now. This Friday will be my 30th day off of it. My oncologist was very open minded and took me off it to see if all my side effects would mellow out. The weight and the hair is going to take some time to get back to normal but I am feeling so much better now that I am off that crap. My energy is back, I am not quick to anger anymore and my near and far sightedness has returned to normal.

    Now, I just need to break it to him at my next appointment. I know he will want to give me 10mg vs. the 20mg I was on.

    They wanted to put me on so much other junk (Effexor and Lexapro - both anti depressents) while I was on chemo. No thank you! So I am hoping that they will not be surprised by my choice to toss these in the trash.

  • Susers
    Susers Member Posts: 36
    edited May 2009

    Gertrich and Virve

    Gertrich - I am a Shaklee girl too!! Loyal for years!! I have heard great things about Tumeric but do not take it. That is something I really need to look in to.

    Virve - I am with you on them scaring us. In fact, I fear that is what I am going to face when I go into the oncologist and tell him I am going off it for good. In my gut I feel that the Tamox is a bad drug and later on down the road we will see the effects of it. I know my body so well and have always been very in tune with it. My body on Tamoxifen was begging me to get off of it.

  • vivre
    vivre Member Posts: 2,167
    edited May 2009

    Susers-I know what you mean about being in tune with one's body. I found my lump, and I new it was cancer. I also knew it had not spread,and that I would be fine, all before they told me anything. I had incredible rage about the idea of taking arimidex. I tried to talk to my doctors about it, but they all just told me I was overreacting. I was just so afraid that it would make me feel old. I have always been very active, and never had any aches and pains, and the idea that I would not be able to move, scared me to death. I took the pills for only a few days, and literally screamed every time I had to swallow it. I have never had such a visceral reaction. I just could not take it. I gave the pills to another survivor and never looked back. I immediately made a committment to eat better and exercise more, and here I am, a year and a half later in a really good place. It is a personal decision for sure, and one we all must feel in our hearts is right for us.

  • Jeanne_D
    Jeanne_D Member Posts: 175
    edited May 2009

    I am just about finished with my radiation treatments..37 in all.  And, my oncologist wants me to be on Tamoxifen.  I am post-menopausal and am terrified of Tamox.  I have read about so many of the bad side effects, uterine cancer is one.  And, it seems that a lot of women, after taking it for a year, have to have hysterectomies.  It only helps with no chance of recurrence and my survival rate by 6%.  I don't think that is enough to make me take it..do you???

  • Merilee
    Merilee Member Posts: 3,047
    edited May 2009

    I want to get of the tamox too.  I have already reduced to 10 mg and I think I will go down to 5.

    I just opend a bottle of 13c that I bought a while back.

  • vivre
    vivre Member Posts: 2,167
    edited May 2009

    Merrilee-The I3C breaks down if it gets old. I keep mine in the fridge. Some people prefer DIM. I have read research both ways. My doctor still recommends I3C so I am sticking with it. I also take tumeric and grape seed. Google them and you will learn a lot.

    Jeanne-we are all told to take tamox or arimidex. That is standard protocol, no matter what stage we are. I think it gives them an excuse to "monitor" us, more tests, more $$$. I still go to a doctor, just not an expensive onc. This is a decision only you can make. It took me a long time before I made total peace with the fact that I said NO. I did a lot of reading and everything just reinforced the fact that I would be okay without it. Look at the actual studies. I found that arimidex  was in a study with tamox users and non users, but not in comparison to those of us who chose lifestlye changes. This really bothered me. How do they know that the pills are better than what I chose? They don't because they do not want women to choose not to take the pills. There is no money in it for them. By them, I mean the drug companies who seem to control our medicine since they are the only ones who have the money to do the studies. I also found arimidex was sold on the black market to body builders. I do not want anything that body builders use. They are all walking chemical time bombs. Look at Arnold-He had major heart problems in his 40's from the steroids he took. Like you I was stage one and these drugs would only give me a supposed 5% advantage too. Well, the stats say that diet and exercise can also reduce risk by 5% so that is the route I chose. I lost 40 pounds by healthy eating and I exercise daily. It is choosing the hard way at first. No magic little pill. But now it is easy to maintain, because I feel so great. My advice to you is to just read, read, read. There are lots of books out there and lots of access  to studies on the net. Take the information to your doctor, and I bet they will support you. In fact, I am going to keep in touch with my onc for only one reason-to encourage her to look at us as individuals and be more supportive of those of us who do not want to follow the drug protocol.

  • Merilee
    Merilee Member Posts: 3,047
    edited May 2009

    Vivre

    How long have you been taking 13c?

  • Merilee
    Merilee Member Posts: 3,047
    edited May 2009

    Does anyone know what tamoxifen is made from?

  • Susers
    Susers Member Posts: 36
    edited May 2009

    Virve - I totally agree with everything you said in your last post!

    Tamoxifen or Nolvadex is also used by the body building community. Google, Nolvadex and Body Building and you will get a whole bunch of items to read.

     Merilee - Like Virve said, read your little heart out!! That is what I have been doing and it has made me feel so much stronger about my decision not to take it anymore. There are a lot of good books out there that support what we are doing by very reputable people and doctors.

    Funny how all nutritionists and herbalists cringe when they hear the word Tamoxifen.

  • vivre
    vivre Member Posts: 2,167
    edited May 2009

    Merilee, I have been taking I3C for over a year, about 150 mg day. I probably should take more, but I try to eat lots of veggies too. I know it has made a difference because I took a blood test , before and after, that showed my sex hormone binding numbers have improved drastically. Don't ask me to explain, I am just taking my doctors word for it. LOL

    Susers-I agree, the more I read, the more I feel confident in my decision. One of my doctors told me not to read so much, just to be a good patient and listen to what we are telling you. Can you believe this?!! I really liked this doctor, but I no longer see her. Someday I might even tell her why!

  • Merilee
    Merilee Member Posts: 3,047
    edited May 2009

    I have only taken 5 mg of Tam. for the last two days and I feel a big difference allready

  • Susers
    Susers Member Posts: 36
    edited May 2009

    Well today marks day 30 without taking Tamoxifen.

    In the 30 days, I have dropped 3.5 pounds, but that was for only 2 days and I am back to the weight, (if not a pound more) I was at the time I went off it. This is going to be the hardest thing to share with my oncologist because it was my biggest complaint about the TAmoxifen side effects.Along with my hair, I think this will take time to get better.

    The GREAT news is, is that I have my energy back, my muscles and joints feel like I am 41 again vs. the 80 they felt like. I have my good moods back vs. being quick to anger all the time. My vision has returned to normal and my digestive system is not so screwed up.

    Now, I just have to make that follow up appointment with the oncolgist to tell him what my plan is.

    I see a licensed Nutritionist for all of my supplements and go on her recommendations. Does anybody do or see anything else, like see a Herbalist or a Natruopath?

    Thanks!

    I see a licensed

  • Merilee
    Merilee Member Posts: 3,047
    edited May 2009

    Good for you. I am down to 5 mg of Tam and started taking 1c3 and I feel 100% better after only on week.  What a difference.  I did not realize how tired and old I had been feeling. My hair had really dried out and was lookig very dull. I had a tense feeling in the back of my neck which is gone now as well. I am gong on a short trip but when I return I am looking for a naturopath her in Lansing.

  • vivre
    vivre Member Posts: 2,167
    edited May 2009

    Susers-I did work with a chiro, who has a special nutrition and detox program for a few months. It really helped me to redirect my eating habits. I have lost about 40 pounds just by eating healthier. I do not count calories or stress about what I eat. If it is good for me, I eat it. If not, I don't. Some of the major things I gave up was diet sodas, sugars, and cheese. I found that when I stopped eating certain foods, my digestion got better and the weight just melted off. Of course, I exercise daily, which is important. As a stage oner, arimidex would only give me a supposed 5% edge. Losing all the midriff, which produces a lot of estrogen, and daily exercise is also proven to lower risk by 50%. So this may be the harder road, but knowing that it is just as effective as a pill keeps me motivated. I would not worry about what you onc says. You may be surprised that he even supports your decision. Mine did. She actually said that she respected it. I bet she would not take the pills either. Unfortunately, they HAVE to follow the protocols set before them.

    Merilee, when you see a naturopath, make sure you ask her about DIM or I3C and other herbs such as cinnomon and tumeric.

  • 07508125
    07508125 Member Posts: 33
    edited May 2009

    fairy49-----when were you diagnosised?  Do you take any flax seed or anything like that?

  • fairy49
    fairy49 Member Posts: 1,245
    edited May 2009

    07508125, I was diagnosed Sept 22nd 2008, I don't use flax seed, but take a multitude of supplements including DIM, Tumeric, CoQ10, VitD3 and the list goes on! :) I am seeing a naturopathic MD, I actually have my next appointment with her next Thursday, I have the Onc in the morning, should be an interesting day!! I will let you all know what happens at the naturopath, she took 17 vials of blood a couple of weeks ago, so I am eager to get the results.

    L

    ox

  • Susers
    Susers Member Posts: 36
    edited May 2009

    Merilee - Isn't that the truth!! I too did not realize how crappy I felt on the Tamoxifen until I went off it! Our bodies are amazing fighters!!

     Virve - I am a pretty short gal at 4'11" almost 5'. I always was at around 100 lbs which was my ideal weight. I am not sure what else I can do to get back down there and back into the clothes I love again because I ate great to begin with. I eat salads at everymeal pretty much and rarely eat sugar and NEVER any soda. I really need to step up the excercising for many reasons and maybe that will be the trick. I have 2 small children and work full time, so it gets pretty tought in the winter to do that.

    That must of made your blood boil when your onc said to "Just be a good patient".

    Fairy 49 - Oh my word - 17 vials!! Because of the chemo I recieved and because they can only take blood from one of my arms, I am not sure I would be able to do that.:) Giving 3-4 is usually tough for me. I am very interested to hear what becomes of all those tests so please keep me posted.

  • fairy49
    fairy49 Member Posts: 1,245
    edited May 2009

    Susers! I know!! it was a lot of blood! I will for sure keep you posted, I am so interested to see what they say!

  • XXMadisonXX
    XXMadisonXX Member Posts: 14
    edited May 2009

    I chose to skip the Tamx. My oncotype was a 13 as well. Since I am stage 1 - very small tumor - I decided not to risk the SE - including the long term SE.

    Everyone has to make the choice that best suits their specific dx and what makes you feel comfortable. I exercise - eat healthy - sleep in a pitch black bedroom at least 7 hrs a night - and avoid stressful people and situations.

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