Tamoxifen for gals who have not had chemo
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The doctor said he wanted to try the least invasive treatment first. He couldn't see taking my breast because "the horse was already out of the barn." Let 's see if we can control it first. I was very fortunate to have responded so well to treatment. Did I do so well because I also changed my diet?? All I know is I exceeded my Drs. expectations faster then he ever imagined.
I made the record books at Duke U, Bethesda Naval Hospital and Portsmouth Naval Hospital. They all stated they had never seen anything like it.......Yea for me! 0 -
Janice54- That's awesome! I'm sure the tamox combined with the diet change both contributed. I hope you continue to do well and stay NED! I am only 32 and I also hope to stay cancer free for a long long long time!
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Janice, your success really is amazing. There are some lessons in there for us & for our doctors.
Kathi
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- I would like to suggest a book by Dr. John Lee entitled "What Your Doctor May Not Tell You About Breast Cancer" with special attention to the chapter on Tamoxiphen.
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Thank you...
I have just ordered that book from Amazon,,,it was only $3.99.....
Kosh
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TYM
I had a horrible reaction to Arimidex also!! Now need to make a decision on Tamoxiphen>>>>>>>
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2tiger4, I'm starting tamoxifen on Monday. Actually feeling good about it for various reasons. Feel free to join us on the About to Start Hormones thread to share what's going on with you.
Kathi
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Hi everyone, I had my lumpectomy in May with rads finishing August 11. My doctor put me on the breast cancer dose of Effexor to help with hot flashes and insomnia for a few months before I start Tamoxifin. She said if she did not, I would take myself off of it. I start my Tamoxifin on Nov 1. Not sure how I feel about it, but I will give it a good try. I do take Zocor for high cholesterol so am curious how the Tamoxifin will help with this.
Donna
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I haven't really had any side effects with Tamoxifen which I started on October 10th. I get a bit of queasy stomach every now and then since I started, but it seems to quickly pass. I also take my pill before bed which I think helps.
Christina
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I have read Dr Lee's book and am rather confused about its advice. It suggests that we should take a form of estrogen called estriol and progesteron as preventative measure against breast cancer which goes against everything that doctors say about hormone positive cancerns. I even traced the only doctor in Europe I could find who was practising Dr Lee's approach. I did not see him in person, we exchanged e-mails and he said that I should take progesterone and estriol even though my cancer was both ER and PR positive. I would like to believe what Dr Lee advocates because it seems much less invasive but simply do not dare to experiment. Regardless what one thinks about the abovementioned advice Dr Lee's book has a very good chapter on nutrition and cancer. For example there is a very good explanation how eating brocolli and excercising interfere with development of hormonal cancers.
I was wondering why no one is mentioning this book and would like to hear other people's views.
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donnajrn, I take Zocor myself, just started in June. I see my pcp in a week or two to check my fasting lipids again to see how my cholesterol numbers are doing because I'm hoping to stop Zocor while on tamoxifen.
Nena, I like to keep an open mind about stuff, too, but there's a lot to be said for scientific proof. Does Dr. Lee have any research to back up his contentions?
Kathi
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A late addition but i am here anyway.
Met with my medical oncologist last week. I turned 38 in Aug and am 10 treatments into 34 for rads. He is telling me my side effects shouldn't be too traumatic because of my age - still VERY nervous, did I say I am VERY nervous? I finish rads after Thanksgiving and go on vacation in early December. I told him I wanted to wait until I got back before starting - he is fine with that. I am also going to get the Tamox Resistance test done - my oncologist is part of a research group at the MAYO clinic and supports the use of it. He also suggested a FACTOR 5 test. Blood clots run in my family and one of the many side effects is clotting in the legs. He says this FACTOR 5 blood genetic test would tell if I am predisposed to clotting - if so he would add a baby aspirin to my daily regime.
He was at the MAYO clinic this week and will call me next week as he was bringing my case up - my mom also had a TIA (small stroke) on Tamox she was in her 50's.
So, chances are high I will do this, I just feel like I have to start apologizing to my staff now for the attitude portion of early menopause. Oh well, at least life goes on.
Good luck all!
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Oops forgot to add, my doc did say don't let the CYP test be a sole determining factor in my decision to take or not take Tamoxifin. It should be a contributor, but there are not enough studies yet to say it should be the decision maker which is why it is still not Standard of Care and thus not covered by most insurance companies. The FACTOR 5 test I mentioned is also not Standard of Care.
I will share the input from his research team when I get them.
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Kathi, I have read 'What your doctor may not tell you about breast cancer' book some months ago and to answer your question in any detail would need to re-read it. Dr Lee bases at least a part of his book on research by someone called Dr Henry Lemon who published a number of studies on protectiveness of a particular estrogen called estriol (as opposed to estradiol and estrone which are implicated in breast cancer) as far back as the '60s. He believed that estriol is in fact antagonist for hormonal cancers. Dr Lee believes that it is not widely used simply because no one would make profit on marketing it as it is provided by nature and cannot be patented. His book is at times convincing but in the end remains too vague in terms of what to do if you have had a cancer with positive hormonal receptors (although he talks about prevention which supposedly in our case would mean recurrence). I think it is worth reading even if you might disagree with it. I would very much welcome other people's thoughts because as I said it left me somewhat confused.
By the way estriol is the main ingredient of Ovestine cream which can reverse the side effects of Tamoxifen on vaginal atrophy and UTIs. If it is true that estriol is not implicated in breast cancer that would mean we could take it. The question who can we ask about this? Conventional doctors dismiss outright anything which is not a prescribed protocol which I would understand if they have found a way of curing cancer. The truth is there are women on this website who have done everything they have been told by doctors and cancer still came back. Some open mindedness would not go amiss.
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The chapter in Dr. Lee's book that stands out for me is the one on Tamoxiphen. I had a horrendous adverse reaction to Arimidex. Now, my onc. wants me to take Tamox. The studies, stats, etc. in the Tamox. chapter have been verified by an ER MD friend of mine. In my mind, the side effects outweigh the benefits.
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Thanks, all of you, for what you've shared. In the end, each of us has to make our decisions based on what feels best for us.
Wndalina, I've kept up with you on the rads group thread. Your med onc sounds great & seems to be really trying to cover all the bases. Sounds very reasonable to me & I have to say I agree with his rationale about the tests. It's good to gather information but to remember to put each piece of it into the larger context.
Nena, thanks for the tip on estriol & Ovestine cream! I'm going to ask about it & pass on the info.
2tiger4, all I can tell you is that I know several women who've taken Tamoxifen for the usual 5 years & had only very minor problems with it. And it did what it was supposed to do & they had no recurrence of BC while they were on it. But, like I said, I think we each have to look at our whole history & consider what our individual risk of recurrence might be & what it is we need to do in order to move on.
For me, tamoxifen can potentially help my bones & improve my osteopenia, decrease my high cholesterol (both of these were just diagnosed this year, along with the breast cancer!!) & keep breast cancer from coming back. I'm 54 & post-menopausal, though, so I'm not having to face the sudden & new onset of going through menopausal symptoms. My own recurrence risk probably runs about 15-20%, after my lumpectomy & rads, given my age & the grade & spread of my DCIS, which was a tad high. So, it's worth it to me to cut that risk in half, which is what the tamoxifen should do.
Nothing we do with all this is without risk & side effects. Even taking something relatively tame like tylenol can lead to serious side effects. So we all have to weigh up our own equations of risk versus benefit. No one else can figure out what's right for us as individuals. And it's great that we get to consider all sides of everything here. This forum has been a godsend for me. I've learned a lot more from the women here than I've learned pretty much anywhere else.
Kathi
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Kathi
You're right that in the end, it is an individual decision, but I'm glad to have all the input from these discussion boards to share experiences thus aiding in major treatment decisions.
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Wndalina - I just hit 39 and finished my rads 2 mos ago. I started Tamox. on September 1, and so far so good. Some aches but generally good. I had a terrible time starting because I was so anxious about side effects, but I'm taking it one day at a time. And I DID warn my staff, just in case.
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I had no chemo and started tamoxifen about a month after I ended radiation.It was horrid at first, It made me week and tired, but i adapted.I have been on it for 2 and a half years now.I take it at bedtime so I can't really say if I still have side effects ,I probably sleep thru the bad stuff.
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sta1129 - I am afraid that my anxiety will be overwhelming - considering I have the anxiety NOW and I won't even start until around Christmas - I would say my fears are pretty on target. The doc did say SE's shouldn't be that bad in our age group as we are so far from *true* menopause - he said it seems to be more severe with those just getting to it and into it naturally.
Now, I have about 2 days a month where I go home from work and wonder if I should be apologizing for being short with someone. Many times that is truly the way I should be but I always go the less stern route. I am just so fearful that the normal 2 days a month will be 30-31! I don't think I could handle the going home and feeling bad about something I said. Don't get me wrong, I am not a woosy or anything, but I work at a University in PA Dutch Country as the Bursar and it really is a pleasant work environment - except for 2 days a month - HAHA!!!
Oh well, stay in touch with me sta1129 and let me know how it keeps going. I will use you as logical side to just chill.... Thx.
Omo - if you sleep through the bad stuff - not much with night sweats then - they scare me too.
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Wndalina, this whole experience produces so much anxiety, doesn't it?? Mostly, I think we all have to figure out what we need to do or not do so we can sleep at night! Kathi
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Janice54 You go girl. Sounds like you have a good attitude and that does help also.
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Just took my 1st pill this morning...
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Welcome to the club, Shari1232. I hope everything goes well for you.
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I started tamox in Jan 08 after radiation. I have had so many se and they just keep on. I am having problems with brain fog. CRS can't remember words, what i was just talking about etc. Does anyone else have this problem and is there anything that can be done about it or am I just going nuts
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Hi ladies...
Honeslty, I had my self sooo worked up about Tamox it wasn't even fun...
I too suffer from Anxiety,,,my doctor diagnosed me with GAD 'generalized anxiety disorder" when I was in my early 20's..i am almost 40 now...and the Breast Cancer has lets just say...added another facet to my anxiety....
Anyway,, I was sooo worried about the tamox when I first took it that I worked myself up into a frenzy and didn't sleep much for the first little while...My onc told me to go off of it for a couple of weeks and see what happens...it turns out when i went back on the tamoxifin I had no problems...
Just some hot flashes and well,,now,,and irregular period...other than that...i think I am a-ok.
Hang in there...and my advice....don't think about the Tamoxifin! and if you do...think about all the women out there that take it and have not had a problem with it...and have not had a recurrence...focus on that,,,and it will get us thru!
Hugs....Kosh
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Stefie...I was on Tamox for about 18 months and had to stop...severe depression. I also had brain fog - so severe I could no longer read anything. I couldn't remember anything I had just read from one paragraph to the next (and reading books was such a relaxing "get-away" for me). I too would "loose words" while I talked...couldn't remember what I wanted to say or what had just been said. I was very frustrated and thought I was going a little nuts...my onc insisted it wasn't happening since I hadn't had any chemo treatments.
I don't know how to deal with the fog, I could never find a way around it...I finally just quit taking Tamox. About 2 months later, I felt so much better: much of my physical pain went away, the brain fog was gone, and the depression was gone. I guess some of us just aren't cut out to take that drug...way too toxic for some of us.
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Kosh
Just wondering if you have received Dr. Lee's book yet and have had a chance to read the Tamox. chapter?
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Stefie I meant to ask how did your pet scan go? Please let us know.
I am still talking quarter dose of Tamoxifen daily and apart from the aforementioned two side effects (hand joints ache and heavy feeling at the lower tummy) my period is late. It clearly is doing something even at quarter normal dose. It makes me want to stick to that.
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Many moons ago, I was introduced to one of Dr. Lee's books - "What your doctor may not tell you about premenopause." His advice reminds me of those scary e-mails you get from well-meaning friends, warning you about health or crime dangers that turn out to be urban legends. His theory that doctors are deliberately not telling you about treatments that would heal you because they're things that no pharmaceutical company can make money on is questionable. Surely someone other than Dr. Lee would speak out as well - are we to believe that ALL doctors ignore these cost-effective cures he supports? As the great Judge Judy says frequently, "If it doesn't make sense, then it probably isn't true."
Dr. Lee and his book were heavily promoted by Arbonne pushers at a seminar about women's health. They even offered to sell saliva tests to help attendees determine the amount of "unopposed estrogen" lurking in their systems. The product they were pushing was progesterone cream. The book didn't specifically recommend Arbonne by name, but for each and every possible symptom of premenopause, the cream was the cure. The cream was $40 per tube, with a dispenser that delivered an inconsistent "dose." One version had herbs of some kind in it that induced a virtual "high" about an hour after application, according to some women I knew who were users. The Arbonne representatives worked hard to create a sense of unease about any and all other treatments women might be using. Scare tactics.
So perhaps Dr. Lee now has some legitimate backup...but I won't be reading his breast cancer book. I'm not a fan.
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