Breast cancer recurs in almost one in four patients....

Kira,

It's a bummer that you couldn't qualify for some good trials but you are lucky in your BS.

Purple,

Nobody has to join clinical trials or feel guilty not joining clinical trials.   Everyone should be given the option for enlightened self interest.   If we all follow our enlightened self interest, the world would be a better place.    Why?

If everyone follow our enlightened self interest, then we'd demand 90% of BC funding would go for the MBC research/clinical trials, instead of the mere afterthought of 5%.  

If everyone follow our enlightened self interest, then we'd ask our MO or BS, whether they are in a small town or not, to bring ispy-2 or something like ispy-2 to their small town.

If everyone follow our enlightened self interest, then we'd talk to every high risk women, every newly dxed women about neoadjuvant clinical trial options and our regret not having known them.

If everyone follow our enlightened self interest, then we'd write to the congress and send a message that cutting science/research NCI budget is shortsighted and MBC is one of the greatest challenge and needs to be tackled head on.

If everyone follow our enlightened self interest, then we'd support metavivor.org or researchers directly with money or tissue or patient records or whatever.

If everyone follow our enlightened self interest, then we'd always talk about MBC to everyone raising money in our name. That the Titanic has been sinking for a long time, and if we continue to look on with apathy and complacency, more Titanic will sink taking 40k lives every year in our country. 

Maud,

DIM is even harder to test than metformin.  Clinical trials cost big bucks, not patentable means no one except government could foot the cost.   In this post I talked about the monetary cost of a pre-operative trial vs a adjuvant trial:

http://community.breastcancer.org/forum/73/topic/789831?page=1#idx_5

Also, cancer is self.   Whatever has a significant effect on cancer, probably has an effect on body too.   That's why best cancer killers are also toxins and why any supplement is unlikely to be a magic bullet without lots of research and clinical trials.    When a ship the size of Titanic is sinking, a scrawny kid says, "I could single-handedly unsink it".   I'd say: "interesting", but I'll keep making my lifeboat.

jenrio

I have to give you the benefit of the doubt , because I know when we email or post to a board, we cannot say things with inflection and words are simply words- nobody can see facial expressions etc ...

but when you say :

"and if we continue to look on with apathy and complacency, more Titanic will sink taking 40k lives every year in our country"

I'm feeling as though you are talking about me ( since you did address this piece to me)  I certainly hope not ! I am not apathetic and far from complacent. As far as I am concerned we are all sisters ... in this thing together and each one doing the best we can, one day at a time.

Thanks Omaz for the link

Jen, the beautiful thing about i.e. DIM is that I don't have to wait 5-10 years for a trial to conclude and I can get on my speedboat and head for the health food store.  I don't have the luxury of waiting. The Titanic is slow and if it is sinking, DIM might just be my lifeboat.  Just like many women are jumping on the Metformin ship before it crosses the pond and docks.  The Titanic is not the only ship that will get me to the other side.

I have/had cancer. My goal now is preventing recurrence.  I know me, my body, I cannot take Tamox anymore, I doubt I could take AIs, those are the only options conventional med gives me. I'm on my own and cannot afford to embark on the ship that might take me down the endometrial cancer or cancer in the other breast or heart disease rapids

PS - those interested can google "DIM thyroid cancer" a vast amount of research is obviously getting funded, i.e.

http://www.recovery.gov/Transparency/RecipientReportedData/pages/RecipientProjectSummary508.aspx?AwardIdSur=127039 

Hi Cycle babe,

I'm all for good news, and especially for development of real answers for more of us, not just as individuals.  I haven't given recurrence much thought and I'm still NED, so your theory has worked just fine so far for me!

It is ironic I think that those who aren't participants in the actual scientific analysis always wonder why their cancer type doesn't seem to have a treatment that always works.

A.A.

I feel somewhat hopeful about DIM, particularly since it is in research.  It is an estrogen modulator, from what I understand, and will have the issues association with estrogen inhibition.  The idea that we could take something which doesn't estrogenize the uterus while it's modulating estrogen in the breast is exciting to me.

For those of us still on Tamoxifen or using conventional treatment, some opinions on using naturopathic substances concurrently is very important.  Unfortunately, medicine will never be able to test all the interactions between drugs, but some they are a little clearer on.  My oncologist asked me to consider only taking the RDA of any vitamin or supplement, as she had real concern it would counteract the drug I had chosen to use.  For those of us who can use Tamoxifen or AIs, they are still the most powerful tool in the ER+ toolbox.

I chose to take more than the RDA of Vitamin D.  The research seems clear that it's good to be in the 35 - 60 range (over that seems debatable re: studies).  I also choose to take more fish oil, as it seems to work well in tandem with conventional treatments.  It is important to recognize there are no conclusive studies on their interactions with Tamoxifen at large doses, but I feel confident enough.

She says as she goes to her mammogram, Xanax in hand.  Pray for me, ladies!

We know next to nothing about cruciferous veges, what is active in them, which genetics patients benefit from them, which subtype BC benefit from them, how much is the benefit.   Already women are seen speeding away on the speed boat called DIM or positive thinking.

Maud asked why no intensive study about DIM.   Well the small studies they have probably have trouble recruiting.   Randomized trials would probably be even more difficult to recruit.   ispy-2 probably could help with certain compounds by minimizing the patient commitment.   but ispy-2 only helps test certain kind of anti-cancer drugs, not the other kinds.

If I make Titanic the movie, Kate would give a speech to everyone struggling in icy water, urging positive thinking on all.  LOL

LTotheK, GL with the mammo! 

Great.  Since gals like you are already on DIM lifeboat, maybe we could save some money on mammograms, MRIs, check ups etc.  Just invest 90% in MBC research/treatment.   Everyone wins.   Great suggestion Maud!

Didn't go so well, gals.  New microcalcifications at site where I've had some in the past, biopsy next week.  On top of MRI and pelvic ultrasound next week.  Very depressed and weepy.  Thank you all for your kind thoughts.

On the trial front, I am going to look through the links offered here and see what I can do.  Coming from a social work background, I consider it a personal responsibility to help the women in front of me any way I can. I benefitted HUGELY from the research conducted by smart users here who helped aggregate all the work done to-date.  I must say, the Komen site's risk assessment tool is nothing short of amazing.  Tons of research information housed in one place. 

Putting fear aside is huge, and I wouldn't penalize anyone from saying "no" to a trial if they've made a strong treatment choice otherwise.  We'll see what my future holds with this new loveliness, and when I get over that panic, I'm going to get back on the karma wheel.

L to the K

Don't despair....you just don't know much yet.

I pray it will all work out and be alright for you.  We are in this thing together - we feel your fear and pain and empathize with you.  You are not alone. We are pulling for you.

Please take care.

Best Wishes to you....let us know.

LTothek,

So sorry about needing another biopsy. One of the fears we all have. I have my 6th month mamo scheduled for next week.

LtotheK, sending pos energy and strength your way 

Jen, I believe you may be missing my point.  What I'm trying to demonstrate here is that a LOT of research is being done on DIM and thyroid cancer.  Why isn't more BC money (billions) going to research on DIM ?  Why are we not seing DIM & BC research. Those researchers are obviously on to something and they need the BIG BUCKS that BC (biggest fundraiser of all, I believe) can bring to the table.  

Yes, I do feel quite safe on my boat with all the dedicated DIM researchers as fellow passengers 

Has it occurred to you that maybe, just maybe, all of the above research could actually translate into MBC research ?  If you look at my links, DIM has been patented....

ETA, thanks AA, I remember having to reread your loooooong sentences on a particular thread  I will definitely enquire as I said before about donating my tumour tissue for the advancement of science and will keep apprised of trials happening in my corner of the world.   

Maud, you should know I always wish you well.  and you ask some good questions.  

I'm just a depressing skeptic.   In vitro studies or epidemiology only give us a hint of what goes on.   I'll be convinced when there is a double blinded randomized trials that gives statistically significant results (this is very expensive possibly impossible for DIM because it's too hard to recruit patients willing to be placeboed ).  

We should also fund fundamental science studies that work out all the mechanics of how a compound act on what pathway.   The shanghai study is interesting.   But it's just a hint of something in the Chinese cruciferous vegetables may be helping.   I'm not convinced DIM is THE thing for everyone.   Before DIM and metformin there was various mushrooms and other herbs and NSAIDS etc.    

I care about a better process that could churn out answers/cures faster than ever before.   I do not believe in any magic compound.   We are on the same page though on MBC.   Definitely only a lifeboat for MBC is worth massive investment.

As an aside, before dx I ate 1+lb of cabbage/broccoli.   I still have grade 3 medium tumor.    So I'm personally not convinced of DIM.   Unless I have a cabbage-resistant BC or a BC that loves cabbage?

Jen, I wish you well also

A small study here.  Unfortunately, and for some obscure reasons, results such as these are not picked up and more research does not follow, they die a slow death 

"Postmenopausal women ages 50-70 from Marin County, with a history of early stage breast cancer, were screened for interest and eligibility in this study on the effect of absorbable DIM (BioResponse-DIM®) supplements on urinary estrogen metabolites. We recruited 23 eligible postmenopausal women from Marin County, California with a history of early stage breast cancer (Stages 0-2) and randomly assigned them to two groups in a double blind fashion. The treatment group received daily absorbable DIM (108mg/day of DIM) supplements for 30 days and the control group received a placebo capsule daily for 30 days.

We tested 2-OHE1, 16 alpha-OHE1, DIM, estrone (E1), estradiol (E2), and estriol (E3), 6beta-hydroxycortisol, and cortisol in the "first morning" urine sample of controls and DIM treated subjects before intervention and 31 days after intervention. Nineteen women completed the study according to protocol, making a total of 10 in the treatment group and nine in the placebo group.

DIM treated subjects showed a significant increase in 2-OHE1, DIM and cortisol and the increase in the 2-OHE1/16alpha-OHE1 ratio approached significance (indicative of chemoprevention). The 6beta-hydroxycortisol/cortisol ratio is lowered indicating a lower total production of 4-hydroxyestrone and 16alpha-hydroxyestrone (potential carcinogens).

All of these findings could be associated with a reduced risk-status for breast cancer. In cell culture, DIM causes apoptosis leading to death of breast cancer cells and prevents endometrial cancer cell growth.

http://cbcrp.org.127.seekdotnet.com/research/PageGrant.asp?grant_id=2064

Apologies to everyone for diverting the topic

Jen, IMO, there's nothing preventing DIM from becoming a valuable mainstream 'drug' except prejudice and like you said before, patenting brassica extract is not worthy to those who hold the strings.  Except that in the meantime, women are dying of breast cancer.  There is no hope as far as conventional med is concerned, nothing will ever change, money will always be the bottom line.  I can also be pessimistic but I'm not a skeptic.

For the urine test, you would need to see an ND or integrative oncologist 

Good luck !

Jenrio and Maud, I've learned a lot from the DIM and clinical trial gold standard discussion.  Thank you!  I applaud both of you for having done the work to help us all know more (I knew about DIM, but hadn't seen a compilation of studies).  Jenrio, what is your background?  You are smarter than I...

Money will likely always be the bottom line for just about anything, supplements included.  Which is why they are a multi-billion dollar (widely untested) arena. 

I sincerely want modern medicine to evolve past the slash and burn approach. But a lot has changed--30 years ago, I'd have had a full axillary node dissection, wouldn't have had access to Oncotype or Tamoxifen, or digital mammography that picked up new calcifications that will be biopsied before I have a full-blown tumor.  We don't have a cure, and so yes, we all need to be more vigilant about our own research and supporting each other by doing trials and charitable giving to research institutions.  As the old saying goes, "give 'til it hurts".  Can't do a trial?  Consider a donation to National Breast Cancer Foundation, Memorial Sloan Kettering, Mayo Clinic, or a research hospital near you.