DIM and Recurrence

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  • islandgirlpr
    islandgirlpr Member Posts: 15
    edited October 2010

    Has anyone had a recurrence while taking DIM?  From everyone's comments, women who are taking this seem to be happy, with a good quality of life and low estrogen levels.  I would think that this is a really important question.  All comments are welcome and eagerly anticipated....

  • kdandrid
    kdandrid Member Posts: 1
    edited October 2010

    Islandgirlpr,

    I have been taking DIM since July. I don't have any side effects. I had my estrogen levels tested this week and the results were: Estradiol - 54, FSH - 12.6, and LH - 3.2. I am premenopause. I read somewhere on this site that the optimum level for Estradiol is 20 or less.

  • Julie50
    Julie50 Member Posts: 227
    edited October 2010

    Can I ask, where do you buy DIM????

  • candie1971
    candie1971 Member Posts: 4,820
    edited October 2010

    what is DIM???

  • PiscesMoon
    PiscesMoon Member Posts: 206
    edited October 2010
  • islandgirlpr
    islandgirlpr Member Posts: 15
    edited November 2010

    You can buy DIM in health food stores or online.  It takes estrogen down non-carcinogenic pathways.  It raises the good estrogen levels and reduces the bad estrogen (I didn't even know there were good and bad estrogens until I started investigating all this).  It is in clinical trials right now for breast cancer, prostate cancer and cervical displaysia.  

     I decided to take it instead of Arimidex when I read about it on this web site.  I told my onc about it last week, and lo and behold, he was okay with it.  He had never heard of it, but I had printed out a lot of info on it for him.  He seemed quite interested.  He told me he couldn't recommend it nor prescribe anything out of the standard treatment protocols, which I understand.  But frankly, he seemed relieved that I wasn't going to take it.  He said he would continue to monitor my markers, etc. and see where this took us.  I believe because of my age (65) and low markers and my onco test score, he felt it was okay for me to try it.  I am so glad he was open to it...I really thought I would get a lecture or experience indifference on his part...but, happily, I was wrong. 

  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited November 2010

    I found a couple of clinical trials (BRCA+ and also cervical dysplasia) involving DIM but they appear to be for women who do not yet have cancer.  The dosage in the study linked below is 300 mg per day. 

    islandgrl - How much are you taking per day?

    Also - reading several articles (including the NIH study) it should be a brand that says BioResponse DIM complex.  That's the patented formula -- evidently other brands may not give you same results.  I bought Natures Way at Whole Foods.

     http://clinicaltrials.gov/ct2/show/NCT01022333

  • thenewme
    thenewme Member Posts: 1,611
    edited November 2010

    Hi JanetinVirginia,

    Just to clarify, the clinical trial you refer to is a Phase 1 trial which is defined as 

    "Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects. "

    The trial is fairly new and is still recruiting participants, so there are no results yet.  Also, if you notice, BioResponse is the collaborator in the study, and they're specifically testing this particular formulation of DIM, so it doesn't necessarily mean anything in comparison with other brands or formulations.

  • islandgirlpr
    islandgirlpr Member Posts: 15
    edited November 2010

    JanetinVirginia:  I take 400 mg a day.  I am hoping that this works as well as these studies show.  DIM is not an estrogen blocker...and that's fine with me because I don't want to block all the estrogen in my body.  It just seems counter intuitive to me.  Your body, even at my age, continues to produce estrogen because we need it for our bones, brain and heart.  We just need it to be modulated.  It is a tough decision to go against modern medicine, but I don't think they look at the problem the right way.  They are looking for a particular pill to solve the problem...when the real solution is to look at your whole body and do whatever you have to do to make it healthy and strong so it can fight off disease.  But it comes down to a personal decision...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2010

    islandgirlpr - I do not take DIM, but I do know of a woman that I "met" on the boards that got a recurrence while on DIM. Her bc.org name is Merilee. I "met" her because she did the same chemo I did - CMF once she had the recurrence.  I am not saying that DIM caused her recurrence, and I realize plenty of women get recurrences while taking tamox or A/I's.  I have not seen her post for months, but you can click on her profile and she states she had too many side effects from tamx so was taking DIM and able to reduce her estrogen by 25%.

    I am interested in the outcome of the trials on DIM.  I am on femara and have not had any trouble with it as far as side effects are concerned.  

  • angied808
    angied808 Member Posts: 30
    edited December 2010

    i had a major recurrence while taking DIM.  i was highly ER+ and taking zoladex injections as well as femara and DIM and recurred, but the cancer recurred in my nodes (no tumor) as ER/PR-

    Frown

  • annettek
    annettek Member Posts: 1,640
    edited January 2011

    Oh Angie, I am sorry you went through that. You were taking DIM and Femara at the time of the recurrance? This is such a nastyass disease. I finally got one of the docs to admit the first two years are the highest risk for that to occur. May I ask what you are on now?

  • annettek
    annettek Member Posts: 1,640
    edited January 2011

    the most important thing in any supplement is to make sure it is USP certified- just another step in assuring quality and that what they claim is in there, is.

    It looks like a little kosher sign - a circle with usp in side of it.  I have to check when I go get mine!

  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited January 2011

    I am not on DIM, but may consider it, as I am declining AIs.  I would say that we should be careful to "blame" recurrence on any one thing.  I think my Onc told me that 50% of women on  hormone therapy have recurrences.  This BC is a mysterious crap shoot.  Don't I wish it was black and white!

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited January 2011

    DM, I take a number of aromatase inhibitive supplements such as grape seed extract (City of Hope is doing a study using this-tried to get my onc to get me in but no dice), myomin, DIM, chrysin, quercetin, curcumin, turmeric, bromelain and I also eat at least 1/2 cup of white button mushrooms almost every day (City of Hope is doing a study on these too and cooking them does not lose the efficacy). I am determined and although I had my last hot flash 8 years ago, they started last July and are going strong. My last estrogen test was undetectable. So if I have a recurrance, at least I won't have to suffer AI se's.

  • ktmimi2
    ktmimi2 Member Posts: 46
    edited January 2011

    Hi Girls,

    I am 61 and have been on on Femara for about 18 months. It started out fine but 3 months ago got progressively worse. I have excruciating leg/joint/hip/ankle/neck pain. I wrap heating pads on my legs at night. I bounce between Vicodine and Ambien to sleep. I am frustrated and grouchy because I can't do anything anymore like get out of the car, walk more than 20 minutes, get up off the couch or floor without looking and feeling like I am 90. I finally went off the Femara over the Holiday because I was waking up to my fingers being curled like I had Arthritis. I am on a mission to find something else natural. My Onco score was only 18 and I am otherwise in good health. I know that my recurrence score is relatively low but do I take the chance? Please send me your advice and any suggestions or experiences you have been dealing with. Tnx.....Happy and Health New Year Survivor Friends

  • Sherbear
    Sherbear Member Posts: 215
    edited January 2011

    Does anyone here do DIM plus Tamoxifen?  I am hesitant, but not totally agains't, Tamox and my ND has said that I can do them together and that the DIM would actually help.  

  • DebbieSue
    DebbieSue Member Posts: 6
    edited February 2011

    I've been on DIM for about a week now and I can already tell that something is changing in my body.  11 years ago when I had my first bout of triple neg IDC 1/11 nodes, I was put on tamox but only lasted 2 months.  During that time I started bleeding heavily and ended up having surgery to fix it.  I was also seriously depressed (i have a history of depression).  I was told by my onc at that I would not likely last 2 years without tamox.  I said I'd take my chances thank you.  So I did last 2 years I didn't have a recurrence for 11 years.  So this time they put me on hormonal treatment with zoladex and eventually arimadex.  I had horrible side effects form the zoladex.  So I decided not to continue and started researching natural aromatase inhibitors which lead me to try DIM.  I have been a bit weepy on it the last couple of days but other than that I'm doing pretty well.  I don't know personally of people having recurrences on DIM but I sure know plenty who have had them on tamox.  I am doing a lot of different things for prevention this time that I didn't do last time so I'm very hopeful that I won't have another recurrence.  Good luck to you!

  • nancep
    nancep Member Posts: 7
    edited February 2011

    Many of you talk about estrogen levels.  Who is ordering this test, oncologist?  I am refusing Arimidex and not seeing oncologist, wonder who could find out about my levels, can any dr. order it?   I would like to try DIM.  Thanks Ladies

  • char123
    char123 Member Posts: 82
    edited February 2011

    Hi DebbiSue:    I am confused by your post.  If you are Triple Neg, why would you be prescibed Hormonal Therapy??  Either 11 years ago or now??  And why would your doc say you would not last 2 years without it?? 

  • FireKracker
    FireKracker Member Posts: 8,046
    edited March 2011
    My onco. said TAKE IT.I said no to all the meds.200 mgs. a day.Does anyone know if it comes in a pill form or only a powder????still checkin it out.
  • hlth4513
    hlth4513 Member Posts: 267
    edited March 2011

    grannydukes-

    I am only aware of DIM coming in capsules, which is what I take. I take the Nature's Way brand - best prices I have found online are at Vitacost, SwansonVitamins or LuckyVitamins.

    Beth

  • rubytuesday
    rubytuesday Member Posts: 2,248
    edited March 2011

    nancep, My oncologist passed the buck on having my estrogen levels tested....said it wasn't his department.....REALLY???  At any rate, my gyno was the one who finally ordered the test.  I'm going to wage war again with my oncologist so it can just be included with my bloodwork from him.  Best wishes!

  • painterly
    painterly Member Posts: 602
    edited March 2011

    My ND told me just to eat all the cruciferous veges instead of taking a Dim pill. I still feel that I should be taking something as well as all the cv's. I saw Dim Plus in the health food shop yesterday. Is that the same as DIM 13.? I see from the label it has added vit. D.

    Anyway, I bought it and started yesterday.

  • starbeauty
    starbeauty Member Posts: 327
    edited March 2011

    Anyone taking DIM and Myomin with Tamox/AI?

  • fairy49
    fairy49 Member Posts: 1,245
    edited March 2011

    you would have to eat 50 pounds of cruciferous veggies in order to get the benefit that you get from DIM, I can't manage to do that!! I take Nature's Way brand, enhanced absorbtion formula, 400mg per day. 

  • starbeauty
    starbeauty Member Posts: 327
    edited March 2011

    fairy49 - are you ordering online or getting it at a GNC?

  • painterly
    painterly Member Posts: 602
    edited March 2011

    Thanks Fairy.

    I had a look at the label. Mine is Nature's Way too. It is 100 mgs, so I expect I should up the dosage. Mind you I eat so much cv's I am beginning to look like a sprout! LOL

  • FireKracker
    FireKracker Member Posts: 8,046
    edited March 2011
    I dont eat any veggies because of the many stomach issues.I think ill start with 75mgs. of the DIM.any suggestions.im soo afraid ill spend the rest of my life in the bathroom i still did not get it.damn will this ever end?????????
  • ReneeW54
    ReneeW54 Member Posts: 29
    edited March 2011

    If you will pay for the blood tests yourself there are a few online sites where you can order your own blood tests and then go to labcorp for draw.  www.privatemedlabs.com is one place.

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