Does DIM really work?

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  • SandraSummers
    SandraSummers Member Posts: 32
    edited January 2018

    dtad I am going to try DIM...would you also suggest I get my MD to check estrogen levels?

  • dtad
    dtad Member Posts: 2,323
    edited January 2018

    Sandrasummers...it’s a little hard to answer your questions since you have not made your stats public. However in general I would say it’s a good idea to have your estrogen levels checked. Good luck and keep us posted

  • SandraSummers
    SandraSummers Member Posts: 32
    edited January 2018

    Thanks dtad I think they are public now!

  • SandraSummers
    SandraSummers Member Posts: 32
    edited January 2018

    What a dork...they are now public...went into settings and changed everything!

  • dtad
    dtad Member Posts: 2,323
    edited January 2018

    Sandrsummers...good job! Thanks. Definitely makes it easier to answer any questions. Yes IMO you should get your estrogen level checked. Many MOs will not do it. Try your PCP or a naturopathic doc if that’s the case for you. Good luck and keep us posted

  • Mandy1313
    Mandy1313 Member Posts: 1,692
    edited February 2018

    Hi. I have not posted for years because it is 9 years (almost 10) since my diagnosis. I never was able to take an AI or tamoxifen for reasons too complicated to go into. But I did take DIM almost every day for the first few years after diagnosis and still do most of the time (I say most of the time because I do skip it every now and then). I am still here and doing well -- is it because of the DIM or because of the broccoli or because of something else--I don't know but I am grateful for each day and wish you all the best.

    Mandy

  • Blondie1967
    Blondie1967 Member Posts: 1
    edited February 2018

    I am wondering why oncologists will not run these tests for us. I have only met my MO once and though she was nice and I am not sure if a couple with her. The whole discussion seem to be about aromatase Inhibitors and when I asked about DIM she kind of stared at me like I had two heads and said she had heard of it but didn't seem to know much about it. She basically told me that she couldn't make me take aromatase inhibitors but that she highly recommended it and would have her own mother or sister take it. I think she ordered my bone density test just to prove to me that at 50 my bones would be plenty healthy enough to do these drugs since that was one of my big concerns. However the test showed that my spine is osteopenic already so I'm more uncertain about it than ever. I have many concerns other than the bones but the bones are one of my big concerns and I do not want to take the medications they give that they say will improve your bones because they have even more side effects.

    I have been very fortunate in the first 50 years of my life to be very healthy and I've never really taken any medications other than birth control pills. Until this past year I've never had a surgery. now I have had 3: 1 shoulder surgery and two breast surgeries for the cancer. I'm concerned about quality of life and I'm willing to make changes in my diet and exercise habits and I'm wondering if DIM might be a good choice for me. I would like to have a doctor that knows something about it though that can run tests to see if it's even doing what it's supposed to do and follow me through the process. Right now I don't feel like anybody is in charge. It reminds me of a relay team with no coach. Each leg of the race hands the baton off to the next person and I feel there is little communication or coordination.

    So what exactly should I tell my MO about DIM? And what exact tests wouldI ask her to run? Are they blood test or urine test or how you go about exactly testing to see how well the supplement is working for you? I want to make some decisions and try to get on with my life. I feel like my whole life has been turned upside down since November and I can't live with it this way forever. I went from being on birth control pills for many years and feeling perimenopausal to finding out suddenly after going off of them that I'm postmenopausal. It has really thrown my body out of whack physically and emotionally. It seems like each day brings some new symptom that's probably a menopause / postmenopausal thing. But even though I feel like having less estrogen has lowered my IQ significantly, I still have to make decisions regarding the cancer. I don't know if anybody can relate to that or not but I feel like I can't think clearly anymore, I forget things, I forget where I put things and if feeling dumb is not bad enough, I turned into a klutz after being very coordinated for 50 years of my life. LOL I'm sure some of my memory issues are not just menopause they are being distracted with all the cancer emotions and decisions. So I need to make some decisions soon.

    If anybody can give me any up-to-date information about dim or how I should present it to my oncologist or what test I should ask him to run I would greatly appreciate it as I'm tired of researching it on my own. Thanks so much in advance.

  • dtad
    dtad Member Posts: 2,323
    edited February 2018

    Blondie...I refused an aromatase inhibitor from the start. I saw my MO once and she basically told me I do not need to see her if I do not take anti hormone therapy. Your stats are similar to mine, but I'm older. IMO you are a good candidate for DIM. I've been taking it from the beginning of my BC diagnosis. I think it would be hard to find a conventional doc that would be OK with taking it in leu of an aromatase inhibitor. You might want to try a naturopathic doc or integrative oncologist if you want your hormone levels checked. Also your PCP might do it. Not testing our hormone levels is a huge gap in our care. Good luck and keep us posted.

  • lala1
    lala1 Member Posts: 1,147
    edited February 2018

    Has anyone started DIM after finishing 5 years of Tamoxifen? I recently had the BCI test which showed me as high risk for recurrence but zero benefit for continuing Tamoxifen (or an AI). I am at the very low end of high risk with a 7.6% risk for recurrence and 5% is the cutoff from low to high. My MO has strongly recommended that I quit Tamoxifen since he feels the risk outweigh the benefits. I've now been off for almost 3 weeks. My joint pain has improved and the hair on my face isn't as thick. I was hoping to magically drop the 15 pounds I gained since DX but that hasn't happened. My biggest problem is I'm a worrier and I'm worried about doing nothing. That's why I'm wondering if going on DIM might give me some protection. Thoughts? Any SEs from DIM that I should consider?

  • solfeo
    solfeo Member Posts: 838
    edited February 2018
    I don't have experience to share but I'm interested in this conversation. What I would be wondering is if the zero benefit from endocrine therapy would extend to DIM in the same way. In other words, why might DIM work where endocrine therapy wouldn't? I'm sure it's not a question that can be answered with any certainty unfortunately.

    I feel for you with that paradoxical result, and I don't fully understand the BCI test because I'm not there yet, but this is where my mind goes thinking about those stats. 7.6% seems like a low risk to me. That's a 92.4% chance you won't recur without any antihormonals. When you look at it that way it doesn't sound like such a bad place to be.

    My Oncotype gave me 9% risk in the first place, and you are a few points higher, so your risk has still gone down after five years. They are looking at your risk relative to individuals with a lower risk result, but you're still very much more likely to not have a recurrence than to have one. High enough risk to consider extending treatment if you would benefit from that, but no good reason to continue the meds because it wouldn't further improve your odds from what they already are. But you still only have a 7.6% chance, which is a lot better than 30% or 40%, or more. Does that make sense? If I'm on the wrong track here I'm sure someone will set me straight.

    I'm like you and would be worrying, so I would probably want to take something, and DIM might be a good choice for the psychological benefit if nothing else. Now that you're off tamoxifen you can also add a plethora of other supplements that you couldn't take before without worrying about possible interference with tam. You might also benefit from exercise if you're not already and getting the extra weight off any way you can.
  • lala1
    lala1 Member Posts: 1,147
    edited February 2018

    Thanks, solfeo. You make perfect sense for me. I'm thinking I might give DIM a try with my doctor's blessing of course. I do take many other supplements such as turmeric, ginger, magnesium, fish oil, baby aspirin, olive leaf extract, Vit D and a multi vitamin. I'm wondering if I should give any of these up since i'm not on T anymore like the turmeric and ginger which I took to help with joint pain. But I've read lots about both and I think they give benefits beyond T so I'll continue for now. Other than the possibility of DIM, any other suggestions? I do work out every day at least a half hour but usually an hour. I'm struggling with the weight but I'm not a healthy eater per se. I count calories and limit them but am not a fruit or veggie fan so I'm probably not eating the right way.

    As to the BCI results, I can live with a 7.6% risk. Sounds low risk to me but it's the high risk label that has me freaking out. My MO asked me to stop the T and wait one month then evaluate how I feel. He's already called in a new RX for a year just in case I can't handle it. And I have about a month's supply sitting here for the same reason. At the end of the month, he wants me to then try a second month. He says it's like AA....one month at a time. He reminded me that I freaked out about going on and was fine so it makes sense that I freak out coming off. He really is the perfect doc for me! He said that just by exercising every day I knock my 7.6% risk to about 4% and if I'd lose 10 pounds it would go to about 2% so that's what I need to focus on. I just feel that "high risk" label warrants something and I'm thinking DIM is that something...like you said, even if it's a placebo effect.

  • solfeo
    solfeo Member Posts: 838
    edited February 2018
    As I was writing that I was thinking they really should think of a better way to describe the levels of risk. Who wouldn't hear high risk/no benefit and not panic, even with a low number like 7.6%? It's high enough to possibly justify further treatment IF there would be additional benefit, but not at all high really. They can't compare your situation to someone with a truly high risk, but they are lumping everyone over 5% (what you could call 'very low') into the same group regardless whether they are low, intermediate, high, very high, or sky high. That's not right and I am sure it has caused a lot of unnecessary anxiety.

    I did take DIM prior to starting tamoxifen and I didn't have any side effects. I have always planned to take it again someday when I am off the tam. Most everything I take is stuff that is considered good for general health, that might also have benefits for cancer, but I take Pectasol-C (form of modified citrus pectin) specifically to prevent cancer recurrence. Ashwagandha is another one. I was taking arteminisen, AHCC, and calcium d-glucarate on the advice of my ND pre-tamoxifen but I stopped because they might interfere. There is a supplement called Breast Defend that might be a good choice, and it combines DIM and at least one of the other supplements you're already taking, plus a few more. It has some promising research behind it. That's another thing I'm not comfortable combining with tamoxifen, but I may start taking it when I switch to an AI in a few months.

    Good luck!
  • dtad
    dtad Member Posts: 2,323
    edited February 2018

    FYI...I take Breast Defend in leu of an aromatase inhibitor. Ive been NED for 3 years.m These are not easy decisions and I respect all decisions made. Ive been NED for 3 years. These are not easy decisions and I respect all made.

  • lala1
    lala1 Member Posts: 1,147
    edited February 2018

    Will DIM or BreastDefend help with hot flashes? Mine are worse now that I'm off Tamoxifen.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited February 2018

    Solfeo:

    I have Breast Defend and was taking until Tamox, too -- and still have some. Did you feel it might interfere with Tamox?

    Regarding Pectasol-C. I took before surgery (the info out there is pretty good about it, especially with prostate cancer if I recall) but I was worried that the citrus peel it's made from had the ingredient that is in grapefruit skins. (Can't remember what it is right now.)

    I called the company that made it and they said it did not. Also a bonus that it removes heavy metals from the body. You're currently taking with Tamox? I may add that back to my agenda.

    Thanks for the info share!

  • solfeo
    solfeo Member Posts: 838
    edited February 2018

    lala - I have heard someone say DIM caused hot flashes in her but I don't think it's the norm. Didn't do that to me but I think you'll have to try it to see how you react. I think it go either way or no effect at all. It's possible your hot flashes will level out after your body makes the adjustment to being off the tamoxifen, which could take a couple of months.

    Eastcoast -If you are talking about tangeretin, it's the thin outer colored part of the skin that contains the high levels of it - it's in the citrus oils. There is some in the white part (pith) where they get the pectin, but not very much. Also the level will be different depending on the type of fruit. The highest amounts come from the outer orange layer of tangerine skins, which is why the similar name. I can't find it right now but I ran across a useful chart at one time that eased my mind about the amount of tangeretin in the pith, but I do avoid concentrated citrus oils as much as I can. Nice to hear EcoNugenics said no tangeretin makes it into the finished product, which is what I always thought because they isolate the pectin.

    As for Breast Defend - I avoid CYP2D6 inhibitors. I have the gene abnormality that reduces my CYP2D6 activity by 50%. I have to be more careful than someone with a normal gene, and I always err on the side of caution when there is an unknown involved. DIM was found to reduce tamoxifen's active metabolites in one study, but they don't know if it did any harm. I posted some information about that further up in this thread awhile ago - basically another one of those inconclusive studies we get so many of. There are a couple of other ingredients in Breast Defend that might inhibit CYP2D6
    and not enough data on some of the others for my comfort. On the pro side, there was a mouse study that found Breast Defend had a synergistic effect with tamoxifen, but having no idea how that might apply to my CYP2D6 intermediate metabolizing human body I don't take the chance.

    Quite a bit of thought and research goes into my decisions about supplements, based on my individual circumstances, and I freely admit to having some unconventional ideas. I never suggest anyone should follow in my footsteps, but that's my reason for not taking Breast Defend with tamoxifen. FYI, here is a good starting point for learning about herbal CYP2D6 inhibitors, but it's not necessarily a complete list.

  • lala1
    lala1 Member Posts: 1,147
    edited February 2018

    Ok...I'm going to order DIM and give it a try. I'm also contemplating this Pectasol-C. I've checked it out and just can't afford the price they want. I see that there are other brands of modified citrus pectin. Would any of those work as well? Also, anyone ever tried JuiceFestiv which is a supplement of fruits and veggies? I don't do well at all with eating enough of those and hear a supplement can help. TIA.

  • solfeo
    solfeo Member Posts: 838
    edited February 2018

    It has been so long since I did the research about modified citrus pectin that any specific reasons I could come up with could be wrong, but Pectasol-C is thought to be a superior product because it's processed in a different way. It might be the only one that has been proven to remove heavy metals from the body. High levels of heavy metals can contribute to cancer. Mercury, lead, cadmium, aluminum, arsenic and others so it's good to keep your levels low and avoid foods that are known to have contamination issues. You would be surprised how many healthy foods can be contaminated - kale, flax and cacao with cadmium for instance - depending on how and where they are grown, and "organic" doesn't always mean lower contamination. I could write a book on that subject alone but my posts already get way too long, haha. The heavy metal effect isn't the only benefit of Pectasol-C, but it's an important one.

    It is expensive at full retail but I look for deals on eBay and Amazon and I have found it for a little as $65 for the large jar of powder. I know someone will probably say never buy supplements on eBay, but it comes in a sealed jar and it's not the kind of supplement that can degrade because it is stored at the wrong temperature or anything like that.

    The "maximum support" dose is one scoop three times per day, and that does get expensive. I did that for the first year. Now I am on the long term "maintenance dose" of one scoop once per day. That makes the 454g jar last for three months, which is much more affordable. You could probably get away with a shorter time on the higher dose (1-3 months) to reduce heavy metals, and then go on the less expensive maintenance dose.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited February 2018

    Solfeo: Thanks for the information! Yes, it was tangeretin.

    lala1: Pectasol-C is expensive but I only do the one scoop as well (or did before). Just do your research on the other brands, if you choose to go that route. They may be very good.

    My naturopath just recommended a fruit/veggie supplement that I believe is similar to the one you mentioned. I may try it. I'll post the name when I can recall what it was. LOL I feel the same. I'm not the biggest eater and trying to eat as clean as I can -- but there's only so much one can eat!


  • arghh
    arghh Member Posts: 9
    edited February 2018

    Thanks for you guys reminding me about DIM. My father took it for a long time after he had a 5 mm squamous cell carcinoma removed - I am pretty sure he didn't take it before he got the SCC. He also took Maitake Gold and bragged that MSK did a study on it.

    I wonder how much broccoli a person would have to eat to get the effect of taking DIM?

  • solfeo
    solfeo Member Posts: 838
    edited February 2018
    Probably more than a person could reasonably eat. There will be differences between individuals, but eating too much raw broccoli can affect your thyroid function. I love broccoli and when I heard it was good for breast cancer I couldn't get enough. Early after DX I was eating around two cups per day, and my TSH (thyroid hormone) level more than doubled into the hypothyroid range. Now I eat about a half cup per day and supplement trace amounts of iodine (around 500mcg/day) and all of my thyroid hormones have returned to normal without meds. That doesn't happen with cooked broccoli, but I don't think you get the DIM effect when it is cooked.
  • marijen
    marijen Member Posts: 3,731
    edited February 2018

    Solfeo, how do you supplement the iodine? With drops? What brand? I was using seaweed but it’s expensive.


  • solfeo
    solfeo Member Posts: 838
    edited February 2018

    I use 4 drops of this stuff per day. I usually buy it on Amazon but a weird thing happened when I went looking for the product page to grab the image. It was completely gone, not even the reviews remain. Amazon only does that when there is some issue with the product so I'm going to write Good State and ask them why that happened. They still sell it on their website. There are other similar brands of ionic iodine.

    image

  • solfeo
    solfeo Member Posts: 838
    edited February 2018

    Good State responded almost instantly, as follows:

    "For some reason, Amazon took down our listing and they will not allow us to sell it for “classified" reasons. They do this arbitrarily and even after submitting MSDS documents and COA documents, we were given no real reason for their actions. We have it available on our website as well as all other sales channels except Amazon. It is frustrating for us as a small company but we have really no say in the matter unfortunately."

    It's probably OK but you might want to consider a different brand if you are impressed by Amazon's godlike powers. A bunch of Good State's other products are still there.

  • Palesa2018
    Palesa2018 Member Posts: 140
    edited November 2018

    thank you for sharing dlb83

  • dtad
    dtad Member Posts: 2,323
    edited November 2018

    Just FYI...I take a product called Breast Defend in leu of an aromatase inhibitor

  • DebrahR
    DebrahR Member Posts: 5
    edited January 2019

    I know this is an old thread--but I just did a search about DIM and found this. wondering how you are doing? this is the brand of DIm I am looking into getting, Thanks!

  • flowerlover2
    flowerlover2 Member Posts: 4
    edited January 2019

    I as well just found this and am looking at DIM instead of Tamoxifen. Will have to look into Breast Defend. It's so hard to decide on what all supplements to take

  • havefaithtoday
    havefaithtoday Member Posts: 100
    edited April 2020

    This has been a very helpful thread. Would love to hear updates on how everyone is doing.

  • roseclarita
    roseclarita Member Posts: 1
    edited April 2021

    Haven't started my hormone estrogen blocker. I'm so scared too. I've just finished my radiation 4 days ago. I just can't, so much fatigue and winded. I don't think I can deal with hormone Femara side effects. Thinking about DIM. Any suggestions?

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