Looking for supplement information so I can get off Aromasin.

dogsandjogs

I have too many SEs with Aromasin. The worst ones are depression and bone pain. I have constant pain in one of my toes and off and on pain in shoulders, hips and knees. I also have diarrhea on and off and my stress incontinence is getting really bad.  Any suggestions?

AnneW

Have you tried any of the otehr AIs? Not all of them affect you the same.

I know that's not the answer you're looking for, but I thought I'd throw it out there, anyway.

Bren-2007

Have you considered quitting the Aromasin?  Your screen name says Srbreastcancersurvivor, and you had an early stage moderate grade tumor.

I'm only 56 now, but I had so many problems with an AI and Tamoxifen that I quit taking them when I was 51.  It's been almost five years now for me without an antihormonal.  I suffered from the same symptoms you're describing, as well as vertigo and constant severe nausea.

Maybe you can talk to your doctor about what your risk would be without an antihormonal medication.

Wishing you all the best,

Bren

Anonymous

Hi seniorbreastcancer, if you search DIM here on BCO, you will find that many sisters are taking this supplement instead of, and sometimes along with their antihormonal.  I am planning on discontinuing Tamoxifen for severe SEs.  Hope this helps, blessings

dogsandjogs

Thanks everyone for your suggestions!

Anonymous

Hi BinVa, do you mind sharing your stats so I can find some kinda comfort in my decision to stop Tamox....thanks !

karen1956

Hi Maud....I endured AI's for 3 1/2 years and finally quit 2 years ago....it was not my onc's preference but he did agree that I gave it my all.....QOL is important....there is no guarantee that you won't progress or have a new primary on AI's, it just increases the odds......the stats for me are much better had I stayed on the AI's (and I tried all 3 plus tamox).....but I ignore my oncs stats and use my own.....its 100%....either the beast will return or it won't return!!!!!  I saw a doc who specializes in BHRT on Friday and she recommended DIM...she is a BC survivor (takes tamox) and she takes DIM.....so I will look into that....I'm also looking into testosterone and DHEA....I know my onc is okay with testosterone......I see my onc in 3 weeks....

dlb823

srbreastcancersurvivor, I believe the first thing you should do is have your estrogen levels checked, preferably with a 24-hour urine test (which is more accurate than a blood test).  That will tell you how much estrogen you really have to worry about, which in women 60+ often isn't very much.  

I've been using I3C in lieu of Femara, which I absolutely couldn't tolerate, and the more I read, the more convinced I am that A/Is are overkill for some women whose estrogen is already extremely low due to age or other factors.  In fact, there was a recent study to that effect, which I'll try to find and post here.  

Feel free to PM me if you want more specific info'.  Since you're in CA, finding a top notch naturopathic doctor, if you don't already have one, shouldn't be hard, and that's the kind of doctor who will take the time to investigate all your hormone levels to help you decide what you really need, and what you want to do if you need help modulating estrogen.   That's who I ended up going to for a concern about osteopenia, and she's been a huge help to me with the whole estrogen, A/I dilemna.     Deanna

dlb823

This isn't the specific study I was looking for, but one that's pertinent to this discussion:

http://www.sciencedaily.com/releases/2011/08/110822161338.htm

I'll look for the other one a bit later. 

karen1956

dlb...the doc I saw Friday mentioned I3C, but said she finds DIM to be preferable...think she said that I3C converts to DIM...but I could have the reason confused!!!  She is having me do a 24 hour urine....need to check with the lab to see if they take my insurance as then the cost is only 159, otherwise its 1000....

Kaara

I'm on Tamoxifen and would like a suitable alternative.  I'm not sure I know what 13C is.  I'm going to ask my naturopath who didn't want me on Tamoxifen in the first place.  It was a compromise I made with my MO because I didn't do rads.  I'm taking a low dose of Naltrexone which he prescribed.

dlb823

Here's the study I was thinking of when I posted earlier:

http://health.usnews.com/health-news/family-health/cancer/articles/2011/08/31/some-older-breast-cancer-patients-can-skip-hormone-therapy-study

Karen, I've tried DIM, but I3C just feels right for my body.  Grape Seed Extract is another natural estrogen modulator that some women use, either alone or in combination with DIM, I3C, or an A/I.

My naturopathic doctor uses Genova Labs for the 24-hr urine test, and the cost with insurance is exactly what you quoted -- well worth it to me to know what's going on in my body.  I hope your insurance will cover it. 

Kaara, here's some info on I3C:  http://www.mskcc.org/cancer-care/herb/indole-3-carbinol   Deanna

karen1956

the doc I saw friday also uses Genova labs for the 24 hour urine...I need to call them tomorrow to see if the $159 pay assured applies to my insurance....will keep you posted

Kaara

Thanks Deanna!  I'll check it out.

Anonymous

Hi Karen, very wise words 

I have notes somewhere that I3C can be too potent at high levels - I believe it was Essa who confirmed this for me - my DIM combo contains 150 mg (2 caps).  It also contains CalciumD glucarate, green tea extract, turmeric, rosemary (have read GREAT things about rosemary and BC, am trying to find an extract, but very difficult, most stores don't carry it) and broccoli sprouts extract.  It is formulated by a doctor whose mother suffered from BC.  

Be careful sisters, many DIM products contain soy....!

Blessings 

Karen, forgot to ask, what grade was your tumour, if you don't mind me asking, thanks ! 

Anonymous

dlb, thanks for the links - I just love this:

Switching Early Breast Cancer Patients To Exemestane Improves Long-Term Survival, Study Finds (Sep. 23, 2009)

Two years later, ooopppsss !

Toxicity of Aromatase Inhibitors May Explain Lack of Overall Survival Improvement

And we, whose lives are on the line, are supposed to give credence to these studies and take them at face value ? 

dogsandjogs

Deanna, just wanted to add that I have very bad osteoporosis (quoting the doctor) so that is another concern--although the onc told me Aromasin causes the least bone damage.

AnneW

Maud, I need more than a headline. Can you give a link to the study about the AI toxicity, so I can see how it was done? Was it that side effects made people stop early, and THAT'S why there's a lack of overall survival improvement??

dogsandjogs

Maud:  This is really disturbing - now they say it is toxic?  I am not really too surprised as all the SE;s I have just don't seem normal. Trying to find this link.  Thanks for posting - we all need to keep on top of all the latest - I don't think the doctors do-

dlb823

Interesting that you bring up the issue of giving credence to studies, Maud.  Here's something I read yesterday on that exact subject:

http://www.jonbarron.org/natural-health/unproven-conventional-medicine-newsletter

By the way, if you're not familiar with Jon Barron, IMO his newsletter is one of the best out there when it comes to a well-researched, analytical approach to alternatives and various health issues.   Deanna

dogsandjogs

Qualitycounts.com       is the link. I couldn't c & p for some reason. It is not the latest news - dated last year

dogsandjogs

Little worried about my heart as I have atrial fibs (but my cardio NP wasn't concerned) when I told her about the connection between heart problems and Aromasin. She said a very low percentage had problems

Anonymous

Anne, I just followed the links provided by dlb and noticed the "headlines", feel free to read whole articles and studies.  I am not taking AIs and will not (when my onco brings up the subject), so have limited concern. 

Wow, srbreastcancersurvivor, thanks for the link and Dlb,  I will certainly continue to follow yours 

Jean0078

This maybe isn't alternative exactly, but after a long talk with my Dr , he said that Fosomax IV has been shown to be a good preventative instead of AL's although not approved for that yet. He is investigating with my insurance other wise it is about $6,000 a year - one IV every 6 mos.  Anybody read anything on that? Not much on the internet.

Bren-2007

Hi Dogs,

There is a gal on this site who takes grape seed extract instead of an AI.  Her screen name is BarbaraA.  Perhaps you could PM her and get more information.

Best of everything to you,

Bren

dogsandjogs

Thanks Bren!