tamoxifen...risky?????

lisametoo

Dear Eric and Lynda,

I just read everything in your website.  Welcome and thankyou so much for sharing your story.  When my mother was diagnosed almost 6 years ago with stage 3c ovarian, Bill Henderson was my life-line.  He had just put out his first e-book, and even sent it to me for free.  The more we get the word out, the more healing will take place, naturally and without harm to our precious bodies.  Please stay on this board and give hope to those who are searching.  God Bless.

Lisa

msannie57

Erick--I'm not sure if your wife was prescribed tamoxifen after or before a bc diagnosis--the study you are quoting--the Breast Cancer Prevention Study--gave tamoxifen to women who had NOT been diagnosed with breast cancer but were considered to be high risk.  It's important when one is telling women to avoid the standard researched treatment for something like cancer that you are quoting properly.  Women who would really like to avoid "toxic" treatment for a potentially deadly disease are all too happy to read here that "Oh, you don't have to do THOSE treatments to get rid of your cancer.  You can just take supplement xyz that I found on the internet and all your problems will be solved"  Who wouldn't want to do that?  In light of that fact, I hope that everyone who posts will be very careful to realize that it's difficult to prove or disprove cancer "cures"  If you had DCIS and you didn't do treatment but took Brevail and your cancer didn't progress, that doesn't mean that the Brevail cured you.  Your DCIS may not have progressed anyway.  You can do all the standard treatments and survive and you can do all the standard treatments and not survive.  The same with the alternative ones. 

IMThankfull

"...I hope that everyone who posts will be very careful to realize that it's difficult to prove or disprove cancer "cures""

It is probably not too hard to "prove" this for those who have been cured via these means...and there are many.   

Although there is nothing wrong with surviving, my hope is to do more than survive.  I am after life, and life more abundant.  My hope is to cure the cancer and not have recurrances because the root problem causing the cancer has been addressed. 

When looking for "proof" there are several questions that should be considered:

How is proof defined?

What is the objective standard of "proof"?

Who documents or validates the proof?

How is the proof communicated and shared?

For me, I understood that conventional medicine might not have an interest in garnering such proof for natural treatmentd.  So, that led me to launch more of a grass roots effort to gather the "proof" necessary for me to arrive at my decision and be comfortable with it.  Books, research, conversations with doctors and cancer organizations, etc.

Have I met and spoken with people who have been healed of cancer naturally?  Absolutely!  Friends, new acquaintances, etc.  They have not all followed the same approach, but then again, there are many approaches.

From what I have read, cancer is not something that "just doesn't progress".  The body in and of itself does not address the cancer cells apart from some form of intervention, which is why the cancer developed and formed tumors in the first place (i.e. the body not disposing of these cells in the right way to begin with).   

Interestingly enough, a number of people who successfully treated their cancer naturally are classified as having experienced "spontaneous" remission.   To suggest that a cancer just didn't progress while on nothing more than alternative methods seems like an unrealistic attempt to simply refuse belief in the efficacy of those treatments. 

As stated in the following research paper, "It has a suggestion of something happening without a cause.  That, of course, is also absurd, for everything has a cause, apparent or inapparent."  http://video.on.nytimes.com/?fr_story=bca7cf83a63a6db9071d0bfaf1f037fbcf0611d4

Mia

erickcarpenter

Thanks Lisa,

I am still working on the site, kind of a go as can kind of thing, but Lynda's write up is something I think that needs to be passed around. It may not be THE way for everyone, but it should give everyone something to consider. The more this goes along, the more convinced I am that we made the correct choice for her.

Have a wonderful life!

Erick and Lynda

erickcarpenter

MSannie57...

To your point, Lynda did no chemotherapy or radiation after doing a considerable amount of research, and making a personal choice without pressure from me, to choose how she wanted to treat it. Had she listened to her first medical oncologist or the second one, she would have gone through the standard radiation and chemotherapy treatment for someone diagnosed with 

Stage 3a Right breast lobular carcinoma in situ. She had two lymph nodes that were positive as well. Fairly advanced. I believe the next stage would be stage 4.

That quote of 49% was one of many, the point I was trying to make was that based on the math, it was indeed, a 49% difference, which, oddly enough was the exact same statistics that BOTH our oncologists quoted. If they had actually read the stats, the difference was 49% of one percent. NOT 49% of a 100%. A difference, eh?

As for your standard researched treatments, Tamoxifen is no longer considered effective for 60% of women with breast cancer as it is not effective for ER-negative breast tumors, or about 40% of breast cancer patients, depending on whos stats you read.

And the two oncologists were also reluctant to bring up the rather severe cases of side effects, and when questioned, one just made an off the cuff remark, well, if you get cancer of the uterus, we just take it! So, take a drug that causes cancer to get rid of cancer. Does that not seem just a bit silly?

The supplement I suggested HAS been tested, and found to be more effective than tamoxifen. Here are a few of those studies that you seem to need.

http://www.nature.com/bjc/journal/v94/n3/abs/6602935a.html

This study was done by S Fan¹, Q Meng¹, K Auborn², T Carter² and E M Rosen<sup>1

1</sup>Department of Oncology, Lombardi Comprehensive Cancer Center, Georgetown University, 3970 Reservoir Road, NW, Washington, DC 20057-1469, USA

²Department of Otolaryngology, North Shore-Long Island Jewish Research Institute, BoasMarks Biomedical Science Research Center, 350 Community Drive, Manhasset, New York 11030, USA

same study in laymans terms:

Hot News: In a 2006 Georgetown University study, indole-3-carbinol (I3C)
phytochemicals in broccoli, cauliflower, and cabbage, were found to boost
the production of DNA proteins BRCA 1 and BRCA 2 - that repair damaged
DNA that are decreased in cancer cells.  (See Rosen E et al., Veggies May
Protect Against Cancer, British Journal of Cancer 2006.)

The university of California at Berkely

http://www.jbc.org/cgi/reprint/M407957200v1.pdf

And the list goes on... I DID NOT just go out and say "WHOOPIE" we don't gotta do chemo cause I found a magic pill! Lynda has undergone a transformation, she is a vegan, she follows a fairly regimented process of building her immune system, fighting cancer with proven cancer fighting foods, supplements, and drinks. Everything she does either:

1. Creates an environment in her body that is caustic to cancer.

2. Boosts her immune system

3. Fights cancer directly

The only other option was to choose to do chemotherapy and radiation. She felt that her research was sound, and that the concept worked for her. and if you will note, I did not say "cure". I believe I said "clear". In fact, I don't see that I said either. What I posted was very factual, and to the point, that the companies that develop these wonder drugs often skew the stats in such a way is that it is favorable to their being used. Personally, for a 3% difference in survival with all of the potential side effects, well, our actions speak volumes.

Now, one more point I would like to make. Not many women want to change their lives to the degree that my wife did. Instead, they choose chemo and radiation. There is nothing wrong with that. Let me repeat that.

Nothing wrong with that.

It is a very personal, very important choice to make. Regardless of your choice, research the heck out of which ever you choose to go down, then be comfortable in that choice.

Do what makes sense to you, but take responsibility for your disease, don't blindly follow ANYONE, including your docs. Do your research, ask questions, and follow your intuition, as it is often more right than wrong. If you wonder why I say that, go to:

www.unwraptheribbon.com and download Lynda's story. Had we followed the doctors advice, she would be either dying, or well on her way.

Regards,

Erick

Cynthia1962

Hi Erick,

I have a question about your wife's dx which I hope you won't mind clarifying for me.  You say she had Lobular Carcinoma in Situ, but she also had positive nodes?  I don't know much about LCIS, but I do know it isn't invasive so were her nodes positive from another source or did she have an invasive type (IDC or ILC) in her nodes?   Also, after Stage 3A, there's 3B, and 3C before you get to Stage 4.  That's very important to those of us who are Stage 3A.  lol 

Congrats to Lynda on being cancer free for a year and a half!  I just passed my cancer free 1 year anniversary this month.  

Cynthia 

erickcarpenter

Sorry, just copying and pasting from her write up and my rather "holie" memory. There is a long story here, when she was first diagnosed, they did not find the positive lymph node until she was "off the table" and they declared her cancer in situ. However, after the pathology dissection, the lymph node was postive in 5 out of 8 slices... and most of my experience was with pancreatic cancer from my first wife, who died 163 days after diagnosis of stage IVb pc. So I often get the two diagnosis goofed. and it was invasive lobular cancer. Once she underwent her 3rd surgery, a mastectomy, it was discovered that she had 2 positive lymph nodes, and more cancer left behind than was taken out in her first 2 surgeries. not sure if that is helpful or not, as we did not dig too deep into the specificities of her cancer once we chose to go the naturopathic route. I have the path report around here somewhere, hang on a sec....

Her2 1+/negative lobular carcinoma SBR grade 2, nuclear grade 2, ER positive/PR positive with a total of about 12 cm of cancer removed from 3 seperate surgeries... (it was a fiasco until the mastectomy).

not sure if that helps or not, but what I have on hand... It is very interesting how we quit being concerned about the detail of the cancer, instead, looked for a way to defeat it without using the standard treatment, but using all the best of diagnostic tools available to her. (she blew an anyeruism at the age of 28, no permanent damage, but has a clip in her head) so no MRI's allowed. We have to go with CT scans... sigh..

But, according to all the bloodwork, she is LOW normal.

Erick

KimberlyC

I am 3C er-/pr+ and decided not to take the tamoxifen I was given.  I read an article while waiting in my onc office for the tamoxifen rx appointment on an herb called andrographis.  I decided to go this route.  With er- and only pr+, I thought the risk outweighed the benefit.  I am only 46 yrs. old.

Cynthia1962

Thank you, Erick.  I really appreciate you taking the time to give me the details of Lynda's dx. It's understandable that you have a hard time keeping all the terminology straight.  My mother is having surgery soon to remove a mass on her ovary and I've been researching ovarian cancer for her and it seems so much harder for me to understand than breast cancer, but I'm sure it's not really, it's just that I've spent so much time learning about my type of cancer.  

I'm sorry to hear how many surgeries Lynda had to have to get all the cancer.  It must have been very difficult emotionally.  I'm so glad her mastectomy was successful.  I was fortunate (if you can call it that, lol) that I had a palpable node so I knew going into my second surgery (I'd already had an excisional bx) that it had already spread.

It's awful that cancer has come back into your life again.  When my surgeon gave me the news, my first thought was of my husband whose mother died of breast cancer and how he must be feeling.  I hate cancer!

If Lynda can't have MRIs can she do a bone scan instead?  I've only had bone scans and CT scans, no MRIs.  She is an amazing woman to have survived a brain aneurysm.  It's wonderful that she's doing so well.

Best wishes to you both!

Cynthia 

erickcarpenter

Yep, she has had a bone scan, early on to be sure that it had not spread anywhere else. A point to make here, we have used every modern diagnostic tool available to her. As little as we don't believe in the standard treatments for cancer, the tools for diagnosing are excellent. I have been very fortunate in that she made very little of her cancer, other than it had to be dealt with. and deal with it, she did. She doesn't spend much time focusing on it, as the saying goes, "That which you resist, persists". She is a super woman in my book! Whatever she needs from me in support, I give it all I have. And the results are quite spectacular. We have a website, www.unwraptheribbon.com where we have a couple of pics up, and a write up that you can download to see how she got to where she is, and how she came to her decisions.

Thank you for your kind words! I hope the best for your Mom. (My mom died from lung cancer.... 40 years of smoking camels caught up with her)

Erick

IMThankfull

Erick and Lynda,

Your story and website are certainly compelling.  I personally appreciate your willingness to be so open about your experience and am sure it will help others.

I have been thinking about starting some sort of site too, just to share what I am learning on this journey.  Who knows...maybe I will do that someday too. 

All the best to you!

Mia

trigeek

Ok so gals how about node positive bc'ers like me.

I am about to go on tamoxifen after my rads ( onc does not want to give tamox while doing rads). My body is still pretty strong ( even after the DD AC and Taxol) so I think I can brave the se's, but if it is not going to work why bother ?

Any research out there for us to ditch tamox ?

Thanks !

lisametoo

Dear Trigeek,

Do you want to help the body naturally inhibit estrogen, or do you want a drug with side effects to inhibit it?  When you can answer that question, all of us "naties" can tell you how to do it.  Go to this site to see the side effects  http://www.askapatient.com/   There are many things you can do to help your body utilize hormones in the way it's supposed to, without inhibiting them with drugs that will certainly be toxic in other areas.  Read this article.  http://www.lef.org/LEFCMS/aspx/PrintVersionMagic.aspx?CmsID=112260  I know some on this board have had a bad experience with this company, but the information they put out is accurate and easy to read.  I check the studies.  Remember, your body NEEDS estrogen.  It is a very important hormone for many functions.  I don't believe breast cancer is "caused" by too much estrogen, but once one has it, it can contribute to it's growth.  Address the underlying cause of the body's imbalance, and it will "right" itself.  Good luck with your decision.  Mine is only an opinion based on my 6 years of research.  http://www.google.com/search?q=tamoxifen+or+natural+therapy&rls=com.microsoft:en-us&ie=UTF-8&oe=UTF-8&startIndex=&startPage=1 

Cynthia1962

Trigeek - there's a new test (CYP2D6) that determines how well one metabolizes Tamoxifen.  It's a good place to start.  The other option is to start taking it and see if you develop any side effects.  I have mild hot flashes and the occasional ache in my hips, so I know I'm metabolizing it.  I also take another medication that uses the same pathway as Tamoxifen and since it works, it's more evidence that I'm utilizing Tamoxifen. 

There's also a thread on here about DIM vs I3C which are supplements that help the body with estrogen.  

Good luck,

Cynthia 

genesis

Dear Erik and Everyone,

We are REALLY enjoying all this conversation!!  It is always nice to hear of others that have chosen the natural healing path with success...way to go, Lynda!!!  My Husband and I really feel as people educate themselves and begin to question what is being told to them by the medical establishment there will be a change for the better.  Erik, we so appreciate your total support to your wife.  My Husband has been my healing partner and he has been nothing short of amazing!! (Go to Natural Healing by Genesis to learn more of what we have done). Lynda and I are BLESSED!!!!

Keep it coming everyone - this is how we learn!!  Lisa, your info is always sound and soo appreciated.  Thank you.

God bless,

Genesis

mkl48

I have not hear that Tamoxifin increases ovarian risk. Blinded and Tender do you have any info? Beth

mkl48

I wish they could decide if the anti- hormonals should or should not be given during rads. There is great variation on this site even at NCI centers. I was told to take Femara and  frquently asked if I were. Is the decision different if it is tamox or an AI? Beth

dlsuniversal

I started taking Tamoxifen in June, 2007.  My SE's became progressively worse as the months wore on.  I started with severe nausea.  My oncologist prescribed Nexium.  The Nexium caused Anemia.  About six months into Tamox., I started getting UTI's.  I had four UTI's in as many months which would not go away.  Add antibiotics to my list of drugs.  Severe depression started about the same time  as the UTI's .  I did not call the dr. because I did not want to add anti-depressants to this whole mix.  I went from taking -0- drugs to taking 3 prescriptions plus an iron tablet for the anemia.  This does not include other SE's such as weight gain, mood swings, memory loss, hair loss, night sweats, etc.  I felt like I was poisoning myself. 

About a month ago I did some research on Tamoxifen.  I discovered that Astra Zeneca, one of the top ten pesticide manufacturers in the world, had also manufactured Tamoxifen (they no longer manufacture Tamoxifen - they now manufacture Arimidex.)  I thought this quote on Astra Zeneca's website was very interesting:

 

NEW DATA ESTABLISH ASTRAZENECA'S ARIMIDEXTM (ANASTROZOLE) AS SUPERIOR TO TAMOXIFEN IN PREVENTING CANCER RECURRENCE New data, from the landmark ATAC (‘Arimidex', Tamoxifen, Alone or in Combination) trial, is presented today at the San Antonio Breast Cancer Symposium, USA.

These definitive data show that in postmenopausal women with hormone sensitive, early breast cancer, AstraZeneca's treatment, ‘Arimidex' (anastrozole), reduces the risk of breast cancer returning by an additional 26 per cent over and above the 50 per cent reduction in risk already offered by tamoxifen. These data also conclude that ‘Arimidex' is associated with fewer life threatening side effects than those seen with tamoxifen, particularly blood clots, stroke and cancer of the womb lining.

Since I stopped taking Tamox., I feel like my old self again - 100% better.  The UTI's are gone - the depression is gone - I lost 15 lbs, I have not had a single incidence of night sweats.  I feel 100% better and like my old self again.

I would like to hear any suggestions to natural or alternative measures to prevent bc reocurrence.

TenderIsOurMight

Beth and all,

Regarding Tamoxifen increasing the risk of ovarian cancer, no there is no established increased risk. Tamoxifen can however stimulate the ovaries, resulting in ovulation, and at times ovarian cysts. Barrier contraception is advised in premenopausal women using Tamoxifen for this reason.

There is an increase risk of uterine cancer however: less than 1 in 300.:

RESULTS: Endometrial cancer risk was associated with tamoxifen therapy for breast cancer (odds ratio = 1.52; 95% confidence interval [CI] = 1.07-2.17). Risk increased with duration of tamoxifen use (P for trend = .0002). Women with more than 5 years of exposure to tamoxifen had 4.06-fold greater odds of developing endometrial cancer than nonusers (95% CI = 1.74-9.47). Prior use of estrogen replacement therapy (ERT) increased risk associated with tamoxifen use (P for homogeneity of trends <.0001). Risk associated with tamoxifen use was stronger among heavier women than among thinner women, although trends did not differ statistically (P = .10). Tamoxifen dose-response effects were more pronounced among women with both previous ERT exposure and higher body mass index than among women in other risk groups" Citation:http://jnci.oxfordjournals.org/cgi/content/abstract/91/19/1654


Tamoxifen use has generally not been advised for greater than 5 years. However, recent results of the ATLAS study (ongoing, 11,000 women continuing Tamoxifen past 5 years) shows a benefit in terms of reduced recurrence. As of yet, no studies are out on Aromatase Inhibitors. stay tuned for another year or so while the initial data on use past 5 years hopefully percolates up?

Lastly, on Femera and Arimidex etc and radiation: to date that I am aware of no study has shown a down side to concomitant use, and in fact there may be the upside of getting the breast cancer patient's circulating estrogen decreased to limit especially distant cell growth, while the radiation kills the remnant breast, chest wall cancer cells. So now more oncologists are utilizing them concomitantly.

Hi Erick: In women advised to consider taking Tamoxifen as a preventive breast cancer agent, their general risk is higher than the average women population risk for their age. They are considered essentially "high risk." For them, a relative reduction of 49% in breast cancer development, may take their percent down significantly. The STAR trial discusses this in detail. Relative risks as descriptive terms are problematic for we patients, as they sound great, yet it is the absolute risk which translates into a better grasp on the individuals circumstance. Due to statistical complexity, medical advise is advised.

Good luck everyone on their journey, both users of Tamoxifen and those who choose not to.
Tender

TenderIsOurMight

Deleted, as can't seem to get the fonts correct the second time around either.T.

trigeek

Hey Cynthia,

Even prior to tamox I am the hot flash queen since chemo ( 7-8 times/night) and gained about 20 pounds, so I am really afraid that I will go into 'continuous binge/hotflash' with tamox.

Sigh..  

trigeek

Hey Cynthia,

Even prior to tamox I am the hot flash queen since chemo ( 7-8 times/night) and gained about 20 pounds, so I am really afraid that I will go into 'continuous binge/hotflash' with tamox.

Sigh..  

erickcarpenter

There is another interesting point to Tamoxifen... They found that it was effective for only about 40% of cancers, so it is no longer the "magic bullet" that they touted it to be at that time, and they are now pushing the newer drug, Arimidex. The funny part about that, is that their patent ran out on it the same time that Arimidex came out. (which allows other manufacturers to make generic versions). Odd coincidence? One might wonder....

rubytuesday

Hi Erick, I enjoyed you & your wife's website.  I had bc 10 years ago and developed a new primary (actually 2 tumors) 2 years ago (BTW, after doing my 5 year stint on Tamoxifen.....).  I was also doing LEF's I3C (which I think is a good supplement) for the 3 years after Tamo .  To add to the interest level, my NEW bc was 'totally tubular' and less aggressive than my original which totally stymied my medical doctors.  At any rate, after reading scads of info on I3C and DIM, I did decide to do DIM in lieu of I3C.  It seems to be a debatable issue.  Best wishes to you and your wife!

Cynthia1962

Erick - is that 40% of breast cancer or all cancers?  Do you have a link to the study because I'm curious since I haven't heard this before.  I have no doubt that AstraZeneca is pushing Arimidex because they no longer make Tamoxifen and they would be stupid to not have a product waiting in the wings to take it's place. 

Rubytuesday - I'm still trying to decide between I3C and DIM.  I've used DIM before and am leaning toward it instead of I3C.  I'm wondering if you feel I3C failed you as well since you were taking it when you developed a new primary?  Did that figure into your switch to DIM?   

Trigeek - sorry to hear about the scores of hot flashes you're experiencing. No wonder you're concerned about how you would react on Tamoxifen.  I was fortunate in that my chemopause hot flashes were almost completely gone before the Tamoxifen hot flashes began and they're even less intense. Sometimes, there are just no easy answers.

Best wishes all,

Cynthia 

rubytuesday

Cynthia, Yes, I did weigh in my new diagnosis and I'm erring on the side of caution after researching both.  If you search I3C vs. DIM, you'll get alot of info.  There is controversy about which is better but the I3C converts to DIM anyhow so by using DIM, you'll eliminate the possibility that something could go awry with the conversion. Best wishes!

Cynthia1962

Rubytuesday - that's a good point about the risk of conversion issues.  I feel that there are similar issues with beta carotene and even Vitamin D. There are so many things that can interfere with a substance becoming what we need it to.  What brand of DIM did you go with?  I originally took BioResponse because it's what my herbalist sold and I'm inclined to continue with it since it's has a patented delivery system to help the body utilize it.  I have found a couple of other brands which use the BioResponse system as well which are DIMPRO and Allergy Research Group.  They all have slightly different formulas. 

Erick - never mind my question on the stats about Tamoxifen because I see you already covered it in another post of yours.  I'm relieved to know it involves all women with breast cancer and not just women with hormone positive.  I wasn't aware that Tamoxifen was originally given to all women with breast cancer and it kind of surprises me since it's obvious it would only work on hormone positive tumors.  Or am I just being dense and that's not what your post is saying at all.  lol  It wouldn't be the first time.  

Cynthia 

rubytuesday

Cynthia, I use Nature's Way DIM-plus which also has a patented delivery system for enhanced absorption....LOL...must be the 'buzz words'!!!    Best wishes!

Cynthia1962

Rubytuesday - lol, yep they have it, too.  Well, at least we have a lot of brands to choose from.  I noticed that 2 capsules of the Nature's Way only gives you 25mg of DIM and I was taking 75mg before and I'm wondering if I should maybe take even more because the recommendation is 75mg to 300mg daily.  Maybe, I'll start out with 150mg a day and go from there.

Thanks!

Cynthia 

erickcarpenter

Nope, you are on the money. They gave (and some still give) to everyone, hormone postive, negative, and those who are "at risk". I found it amazing. Especially with the side effects that were well documented.