Natural replacement for Amiridex.

DigitalCowgirl

Hi, 

My MO seems to treat everyone the same.  Had I not insisted on the Oncotype dx test, I would now be in chemo.  My score came back a 3.  I had no node involvement, but my tumor was over 2 cm.  I had BMX a month ago and all went fine.  

Despite my low score my OC said he wanted me on these toxic meds for 5 yrs.  He rattled off side effects and concluded the 9 minute appointment.. After reading about the side effects I'm thinking there must be some natural alternatives for me.  Any suggestions?  

Thank you. 

DianaNM

Hi, DC, you sound like me. Had a MX on one side, no rads, no chemo. Now I have a scrip for Femara, and I don't want to take it! 

I'm taking a month in between Estradiol tests to see if my supplements have any effect on it. I'm taking Bioresponse DIM, Activin (grape seed extract), and curcumin. If the results are negligible, I'm going to try the Femara.

I hope they have a bit of an effect, because I'm not confident I will be able to stay on the Rx. I am the queen of side effects, even got a skin rash from a recent dose of Bactrim that is still with me two weeks later! 

Should add, this is NOT with my oncologist's blessing. I asked her if she had any patients taking DIM and she didn't seem to know what it is. My appointment next month is with an Integrative Oncologist. 

DigitalCowgirl

Hi Diana,

Thanks for the info.  I keep staring at my script because I don't tolerate meds well either.  And I worry about permanent damage from them.  But I also worry about deadly distant mets. Please let me know how your meeting goes with your IO next month.  I will be getting another opinion and let you know what comes  of it. Best of luck to you.

Soyaandpepper

DianaNM-So glad to see you on this forum, I was beginning to think that everyone is so concern about chemo and radiation after surgery. I don't know if you remember me from the May mastectomy thread nut I remembered you from there,  I've been researching on some other alternative methods for after surgery as well and everyone in the other forum seems to be so concern about just the hormone receptors and oncotype tests on whether to do chemo or not. I am still waiting on my receptor results and the MO I went to today for my 1st consulation is an ASS! He just assumed that I wanted chemo and started talking about the different cocktails and about just waiting on my receptors results to decide which one to use. I thought I was there to discuss the benefits and the risks for me getting chemo. 

Question for you, you said no rad and no chemo, was that decided by your MO based on the oncotype results? A lot of them just based their decisions on that. Where I'm from in a little island in the the Caribbean, we don't have an intergrative Oncologist here. I think changing my diet and juicing and maybe taking certian supplements, my body will beable to kill what ever cancer cells left in my body (if there's any). 

Blessings2011

DigitalCowgirl - I felt the same way.

After my BMX for a VERY small DCIS and microinvasion of IDC, my MO told me my risk of recurrence was less than 1% - 2%. Then she told me she wanted me on Arimidex for five years, and oh, by the way, she would probably put me on one of the bone-building drugs as well. At that point my mind shut down.

I had to go home and really process this. I already had numerous of the AI side effects from OTHER medical conditions. I have osteopenia, degenerative disk disease, spinal stenosis, osteoarthritis, and fibromyalgia which all cause occasional unbearable joint pain.

I also have numerous vestibular disorders, autoimmune issues, and am allergic to most drugs known to man.

I told her that I was 14 years post-menopausal, and had already had a hysterectomy, so why on earth would I need an estrogen-sucking drug? That's when she explained that estrogen is produced in the adrenal glands as well as in.....BODY FAT! (of which I had plenty.)

I went on Optifast and started exercising, and am now down 44 pounds with 20 more to go. I am physically active again. The MO said this alone would reduce my risk of recurrence by more than 23%

I said that I'd gone on the cancermath site, and that taking an AI would extend my life by 9 months. She said life expectancy wasn't the issue, that recurrence was. Would I rather live out my life with mets or without?

I finally got her position. Her only job is to keep her cancer patients from getting a recurrence, and if they do, provide them with the best possible treatment.

We had a very long discussion about quality of life, and what I was willing to put up with. The reality is that there are women who either don't have side effects, or who have mild ones and cope well.

My mom always told me "Honey, you won't know until you try." So I agreed to start the Arimidex in the fall (she wants me to wait til after Optifast is over) and she will keep a close watch on my SEs. If they start to get serious, she may change me to another drug, and if I have trouble with that, she will respect my right to refuse.

There is a thread about Arimidex side effects with almost 5,000 posts. There are also numerous threads about women who have chosen alternative methods for reducing estrogen.

And then there are the Stage IV women who say that they wish they could take an AI! And women who say that five years of a drug is nothing if it will keep you from getting a recurrence. And that women who have no side effects are not the ones who post here.

There are many pros and cons. My decision at this point is to make my body as healthy as I possibly can through weight loss, diet, and exercise, and do a trial run of the Arimidex. I want to give it my best shot, and I want my MO to know that I am doing my part. I appreciate her understanding of where I stand with QOL issues, and is willing to respect them.

DigitalCowgirl

Hi Blessings, 

Thank you so much for your post.  It really helps.  It sounds like your MO really talked this thru with you and now you are on the same page.  Regardless, you are so brave for trying the Arimidex .  My MO literally spent 9 minutes with me and almost knocked me down running out of the exam room after prescribing Arimidex.  I definitely need to fire him.

I  am also about 12 years post menopausal and was not understanding why I needed the meds.  I had no idea estrogen was in the adrenal glands and fat.  I need to lose about 15 pounds myself but I can't shake the weight despite 1200 - 1400 calories a day paired with 1 hour a day on the treadmill.  Am seeing my PCP next week to see if my thyroid may be misfiring.

Congrats on your terrific weight loss!  You're doing great.. Please keep us posted on how you make out.

Hi Soya!  I remember you from the  May mastectomy thread.. My MO did the same thing to me my first visit.  He told me he was ordering 4 rounds of chemo before even blinking an eye.  Good thing for this forum because I was well armed with info and just fired questions at him until he relented.  I told him I wanted to review my pathology report and demanded he order an Oncotype test.. Thank God because once he did both he realized I would not benefit from chemo at all.  Dummy!. I am also looking at natural alternatives to hormone drugs and am looking for an intergrative oncologist.  My MO is scary.  Pls keep us posted on your progress.

hugs to all. 

Momine

Blessings, that is so great that you lost all that weight and started being physically active again. I am impressed.

DianaNM

Soyaandpepper, I had a mastectomy because I was told that Mx=no rads and Lumpectomy=rads. Did not want rads! Although due to the MX and removal of 16 nodes, I am at high risk for lymphedema. Guess you can't have everything.

And no chemo because of what the Oncotest showed. My score was 25, right in the middle, but because I am highly ER+ with no nodal involvement, it also showed no benefit from chemo. Fine with me!

I think rads and chemo are the gifts that keep on giving (and the mammos, and the biopsies, etc, etc), and I am so thankful this was an easy decision for me. Now to keep the cancer away so that I don't have to go through that process again. I have one breast left, I truly thought about getting rid of it.

My MO was fast with me too, but she listened when I asked for an estrogen test. Got a copy of the results today, and it says 3.9 Estradiol level. I have actually called her office to have them double check this number and see if it is a typo. I'm not too surprised, I have all the signs of barely having any estrogen in my body. But it also means that Femara isn't going to do me much good! I was really ready to give it a shot, since I don't want to be one of the Stage IV ladies with regrets, but will talk to the Integrative doctor about this.

So the question is how did I wind up with a 2.5cm, 99% ER positive tumor with an Estradiol level of less than 5%? It had a very high mitotic rate too. I have a theory, but the doctors are not interested. The purse I used the last few years when going to estate sales, shopping, on vacation etc, had a shoulder strap on which I placed a case for my cel phone. It sat right between my boobs. Maybe I had a small DCIS, it had only been a year since my last mammo. But I think the cel phone made it go crazy, which is one reason to worry about the remaining boob. So tell your daughters not to put the cel phone in their bras! I might be right about this.

dlb823

Diana, that is really interesting about your cell phone.  Several times recently I've been tempted to put my cell phone in my sports bra (like when I walk or am at the gym and don't have a pocket in my shorts), but my gut instinct has told me not to do it!  Then, yesterday, I saw some fascinating images of a head/neck/chest thermography that showed what appears to be very significant inflammation in and around the area the patient holds their cell phone.  I'm not sure if I can find and post them here, but if you want to PM me, I can tell you how to find them.

DigitalCowgirl, I tried DIM and Grape Seed Extract, but settled on I3C, in lieu of Femara or Tamox.  You might want to read up on all 3 because, as with A/I's or other meds, I don't believe it's a one-size-fits-all situation. What finally gave me peace of mind about refusing an A/I was going to an outstanding naturopathic doctor -- one who is certified in oncology -- and having her do extensive hormone testing.  I've posted about it quite a few times elsewhere in BCO, but happy to answer any questions.  Grape Seed Extract is currently in trials @ MDAnderson.    Deanna

Blessings2011

DigitalCowgirl - thank you for your kind words.

I think that my BC dx really saved my life in SO many ways.....I never would have put any kind of emphasis on getting healthy if I hadn't gone through that. The Optifast program was a huge commitment in terms of discipline, time, and MONEY.

I haven't had any regular food since March 22nd of this year. On July 11th, I will get to have 4 oz. of protein and half a cup of cooked veggies per day...wooHOO! (Optifast supplies all the other nutrients and supplements in a day's worth of products. Fortunately, I like all the products.)

Before I started the program, I needed a head start on losing weight. I drank a lot of Trader Joe's whey protein smoothies (powder, water, ice, greek yogurt, blueberries, fiber powder) and for dinner had a lot of Progresso Light Soup. One week I lost 4.5 pounds on that.

Sounds like you are doing well with diet and exercise, so maybe the PCP will have some info for you!

They took me off ALL my meds when I went on the program, except for thyroid. I guess if you need it, you need it no matter what. Even without my other meds, all my lab results are now normal.

Oh, and your MO? He works for YOU, not the other way around. If you can, I sure would find another, more compassionate professional to partner with.

Hugs to you!

Blessings2011

Momine - thank you so much! I haven't been physically active for years. I just haven't felt good.

Then came BC.....

I don't think my current energy comes from weight loss so much as it does from getting away from white sugar, white flour, and gluten. I'd always wanted to go on an elimination diet, but it was too hard.... Optifast made it easy.

Now I go to the gym, water aerobics, ride my bike, and walk. I wear a pedometer everywhere I go and aim for 10,000 steps a day. (Impossible for me, but I try....)

Even my fibromyalgia pain has gone away. I actually WANT to go out and move.

This is what scares me about the Arimidex. I don't want to go back to feeling the way I did...in too much pain some days to even get out of bed.

One of my friends was really having disabling joint pain from the Arimidex, and the next time I saw her, she said she was doing much better. I asked her how, and she said that she just takes Vicodin every day!!!!!   Uhhhh, no thank you!!!

Women who are active and physically fit have always impressed me. I always wished I could be like them. Now I am starting to understand that I can. I may never run a marathon, but I can get out there and move.

Anonymous

DigitalCowgirl, high 5 for demanding the oncotype and being spared chemo !  Really really wish the oncotype had been available for node + two years ago when I was dx.

After 18 months, I fired Tamox, the SEs were unbearable.  A few months before I quit, I started a combo (I3C, DIM, Brocophane, grape seed extract, rosemary, calcium D glucarate, turmeric and green tea extract) all known to process estrogen.  Happy to report that I'm getting the same SEs as Tamox except depression.  I say happy, because it means it's working (aches, pains and hot flushes) but no ill effects whatsoever.  I'm thinking of adding the Activin for extra insurance.

Not looking forward to seeing the onc next week - he'll want me to start an AI - I'll take the script but won't fill it.  When I told him no more Tamox, he recommended AIs.  When I said: What if I can't take AIs either, he did not appear concerned and replied: Well, you'll have tried everything.

Wishing you the best  

DigitalCowgirl

Diana, we have almost the same dx.  I think you were right to ask for the estrogen test.   I am going to do the same.  You would think these MOs would check estrogen levels before slinging scripts that can harm many women.  Thank you so much for your post.

Maud, that's fantastic!  Did you decide on your natural regimen on your own or did you get help from an integrative oncologist?. I don't know if I would know where to start.

dlb823, thanks  for all of the great info.  I'm starting my research tonight.  I have heard of the great benefits of grape seed extract.  I'm  just learning about DIM and I3C.  I am actually looking for another MO and will look for one who specializes in natural methods.  Your Doctor also gave you estrogen tests so it really tells me that one size does not fit all when it comes to treating cancer.  That's why I am so frustrated with my MO.  But he's so fired!

Blessings, you go girl!  You should be so proud of your accomplishments.  I don't think I  could go that long without eating real food.  Bravo!

Thanks so much to all who have posted and help point me in the right direction.  

Hugs and healing to all. 

DianaNM

I forgot to mark this thread as a Favorite and couldn't remember where we were having this interesting discussion.

My Integrative doctor appointment is not until late July. I am really hoping they are up on all this, but they are part of the same big cancer center as my MO. I feel like I am taking every supplement that is "supposed" to help prevent recurrence with no clue if it is the right thing for me to do. 

Well, they can't hurt, right?

Blessings, truly, great for you! I have a habitually low body temperature, low oxygenation, and a slightly low blood count. No pill for these except exercise. It is over 100 degrees here every day, and all we have is a swamp cooler. I really need to get on my treadmill, but I also think I need to get my lymphedema sleeve first. Getting fitted on Monday, so now more excuses after that! Then I see the Lymphedema therapist on Thursday for some resistance band exercises. 

anastasia31

Maud and DianaNM,

I saw that both of you have tried DIM.  I'm curious how you found the brand that you are using.  Was it recommended to you or did you figure it out on your own?  I'm still researching and not sure which one would be the best.  Wish I knew of a good naturopath that could help me figure this stuff out. Thanks for any suggestions.

Anonymous

DigitalCowgirl, sorry, I lost track of this thread.  I found the combo I take after extensive research.  Scratching the surface, I found that a lot of DIM formulations contain soy which for me is a no no.  I finally found a formulation I trust without soy 

Anastasia, the brand I finally found is formulated by Dr. Dr. Lorna Vanderhaeghe and it includes all of the ingredients I mentioned above, all in one cap.  I take two in a.m. and two in evening. 

http://healthyimmunity.com/products/Estrosmart.asp

purple32

And I worry about permanent damage from them.  But I also worry about deadly distant mets.

So many of us seem to feel this way. I never knew what a " Catch 22" there was with BC  TX. At least if you go in healthy, you are a step ahead. With all of my other conditions, the more serious SEs of the drugs are a real concern. My osteopenia is climbing toward the osteoporosis range, and I have already broken 3 bones.

I did not do rads because of my lung disease.  I am looking into GSE as well.

What's a girl to do ?  sigh.

DianaNM

Just did a search for "bioresponse dim" and "no soy". Looks like Nature's Way makes one. I bought one made by the company with the patent on the formula, and it has soy. My estradiole is super low so I'm taking it, but then will buy a different one. In fact, I'm probably going to take less.

anastasia31

Hi Deana,

I have never heard of 13C.  What exactly is it?  I was also wondering if you know of a good brand of DIM and what the recommended dose is.  What about turmeric/curcumin.  Do you take that or know how much is a good dose?  Sound like you are having good luck with your naturopath.  I'm still trying to find a good one.  Thanks for any help.

dlb823

anastasia, I3C and DIM are both derived from cruciferous vegetables.  Here's an article that helped me understand the benefits of each one:   http://www.lifeextensionvitamins.com/ini3.html

DIM is often found in 200 mg. doses.  The I3C I take is only 25 mg.  As far as brands go, my experience has been that integrative and naturopathic doctors usually recommend and sometimes have available in their offices the highest quality brands, but I get my I3C from a natural foods market.  Here's a link to the brands and products UCLA carries in their Reflections Boutique: http://www.simmsmanncenter.ucla.edu/Reflections/section/supplement-list.asp   

Where are you in CA?  I'm out in the desert (near Palm Desert), and I can recommend someone here if you're in So. CA. Otherwise, the ND I use told me about this organization (she belongs to it) as a way to find NDs who have experience working with cancer patients and oncs:   http://www.oncanp.org/  

I use Paradise Herbs Turmeric, and also their Green Tea Extract.  My PCP strongly recommended both supplements shortly after I was dx'd.   

Deanna 

anastasia31

Thank you for the info Deanna.

I am near Sacramento, but going to UCSF for my surgery etc.  I haven't checked with their Integrative Medicine people yet but plan on making that phone call this week.  My surgeon is not strongly recommending estrogen blockers but I thought I would give the more natural ones a shot. 

DianaNM

Anastasia, it's unusual to hear that a doctor is not recommending the HT meds. What reason did they give? Are you low positive ER? 

Momine

Blessings, i am not on arimidex, but on femara. It seems like arimidex is tougher sometimes in terms of SEs, but I am not sure what the differenc is.



Anyway, I have had some joint pain and stuff, and it can be annoying, but being active actually helps. So my feet may feel achy when I start a walk, but by the time I have walked a bit, they feel fine.



I know some people end up with horrible SEs, and I may too down the road, but for now it really isn't too bad.

BreathingPeace

Hi Digital Cowgirl,  Arimidex is an anti-estrogen, as AI Inhibitor, and it is being given to you and ALL of us who have cancer tumors that are estrogen receptor positive....meaning that your tumor(s) are being fueled by estrogen.  These AI's stop the production of estrogen in the body, hence stop the growth of tumors, meaning no chemo needed.  There are some of us, like me, whos body does not respond to the AI inhibitors, and then have to have chemo.   Believe me i would rather do the AI inhibitors ANY day instead of chemo!!  Main side effects of the AI's are usually muscle and joint fatigue. Some people get it some dont.....better than breast cancer tumors anyday!

Sincerely,

Breathing Peace

Stage IV BC 3 years, chemo 4x

Soyaandpepper

Breathing Peace-Just wondering how you found out that your body do not respond to the AL inhibitors?

Layla2525

diana, do you know if the grapeseed extract is an aromatase inhibitor therefore restricts the production of estrogen as I heard?  It seems plausible because I have been taking it and at first it increased the hot flashes like crazy but after 10 yrs of hot flashes, I hardly notice them anymore..are the HF ever gonna stop!? Know any 70 yr old women we could ask?

Blessings, congrats! that weight loss stuff is so hard to me. I cant stay on a diet, I have been walking but it doesnt seem to do much. How long before the weight loss kicks in? I need to get about 30 lb off at least or buy new clothes that fit. I so admire those that are able to lose weight as its one of my main goals. Thanks for sharing your success and your diet tips. I am gonna try yours, I have tried so many diff ones, had limited success with Jackie Warners org plan but I hate eggs,especially boiled ones so fell off that wagon.

DianaNM

Layla, that is the hope, that the grapeseed extract and the DIM are AI's  without the bad side effects. There have been clinical studies started, but not completed. It is a hope for those that cannot take the prescription meds for various reasons.

vacationbound

I have been doing extensive research on this very subject as I am ERPR + and I just had my Hysterectomy to rid my body of my estrogen as my Tamoxifen failed and started to cause Uterine Cancer as a result. The Onc wants me to take Arimidex, which is an aromatase inhibitor and will benefit you as well. Dropping the weight too will help as estrogen hides out in the adipose tissue's and this is my next plan of attack as my ER assay show's that I was a 99% status. If you have any type of cancer that is ER driven, the priority would be to rid your body of as much production as possible. The only bad thing about any AI is it cause's bone loss from lack of estrogen so taking Strontium or a calcium plan of mag, pot, Vit D and calcium glucarate will decrease the bone loss activity.
What is estrogen?
Estrogen is an entire class of related hormones. They include estriol, estradiol, and estrone.
Estriol is made from the placenta. It's produced during pregnancy.
Estradiol is the primary sex hormone of childbearing women. It is formed from developing ovarian follicles. Estradiol is responsible for female characteristics and sexual functioning. Also, estradiol is important to women's bone health. Estradiol contributes to most gynecologic problems such as endometriosis and fibroids and even female cancers.
Estrone is widespread throughout the body. It is the only one of the estrogens that's present in any amount in women after menopause.
Estrone (E1) is found in adipose tissue/body fat, (E2) Estrodiol, Estriol (E3)-confirm this as could be inaccurate-Progesterone (pg) DHEA-S (DS) and Cortisol (c)
Estrone is synthesized via aromatase from androstenedione, a derivative of progesterone. The conversion consists of the de-methylation of C-19 and the aromaticity of the 'A' ring. This reaction is similar to the conversion of testosterone to estradiol.
http://pubchem.ncbi.nlm.nih.gov/summary/summary.cgi?cid=5870&loc=ec_rcs
I'm not sure about AI's or Bisphosphonates. I'm fresh out the gate with diagnosis in Aug 2011, did all the adjunct stuff, now Total Hysterectomy and I'm suppose to be back on my Arimidex but it gives me terrible SE's; My Onc wants to move on but I'm stalling-I had reaction to Tamoxifen which led to the Hysterectomy and Arimidex say's on pkg if your sensitive to T then A not going to work either. I'm a poor metabolizer and I feel if the little left Estrone (E1) in my adipose tissue can be addressed then I can slim down a lot-from what I understand estrogen lives in fat tissue, there's is nothing I can do about the estrone that the adrenals make but without any estrogen the body will just convert testosterone (Estrodiol) so your never going to be without any estrogen in your body. Aromatase, an enzyme in the body, turns the androgen testosterone into the estrogen estradiol. Estrogen converting cells in the adrenal glands, ovaries, placenta, testicles, adipose tissues, testicles, and brain contain this enzyme-too little androgen can cause several health problems-Arimidex cause's many SE's. I am in experimental mode right now. I am doing lab work on the estrogen panel giving me a baseline with no Arimidex then in 3 months, I will take the Arimidex-3 months from then, I will compare. If there is no huge drop in the estrogen panels then I do not see why I would need to take Arimidex, remember, I am a poor metabolizer of drugs and what doesn't work for me may work for you. This is just how I choose to gauge it.
Also, if your postmenopausal, your more than likely to be prescribed the Arimidex or some other AI-this is a paragraph from the prescribing sheet of Arimidex; 12.2 Pharmacodynamics it states: Effect on Estrodiol: Because aromoitization of adrenal androgens is not a significant source of Estrodiol in pre-menopausal women, Arimidex would not be expected to lower Estrodiol levels in pre-menopausal women"; so chemically, they are two different drugs-Tamoxifen is blocking the predominant source of Estrogen from the Ovary's while the Arimidex is inhibiting manufacturer through the adrenal glands and other areas of the body. Also noted in pkg info is that Arimidex blocks only 70% so it is certain that at least 30% of estrogen will remain in the body so if your doing panels with your ND, you will still have trace amounts show up.

harvey

Hi everyone,

Just thought I would add my halve penny worth. 

I was dx Jan 2006 with stage 3 grade 3 breast cancer. My tumour as lobular and a solid lump, both rare types of bc.

i had WLI, Chemo and rads. I was then told that I had 85% chance of being alive in 5 years - howevr if i took Amiridex, the risk was halved.

Since I had a morgage to pay untill 2014 I took the Amiridex, however within 4 weeks I was interrible pain could'nt even eat.

Also I didnt know at the time I was terribbly confused - family gently stopped me driving  and were getting used to finding things in strangeplaces.

I went to docs because of the pain - and was advised to stop the AI until I seen my oncologist. The pain got better and I started to come out the fog I was living in.

The unc wanted me to try a different AI - but said there would still be a degree of confussion.

Now is June this year i have mets in my spine - causing spinal compressio.

Am I sorry that I never took the Ai - NO. I've had  over 5 goodyears - however if I had known there was a natural replacement for Amiridex I would have take it.

Guess what I'm trying to say is - make the best decision you can for now - tomorrow may not come.

Harvey