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Topic: For Informed People Using Alternative Treatments

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Nov 30, 2013 09:20AM - edited Dec 3, 2013 08:35PM by lightandwind

lightandwind wrote:

Trying once again to find a safe, supportive, non-judgmental place for people of all ages, all stages, who are already using herbs or alternative substances for breast cancer.

It is assumed that if you post here you have done your own research, spend a great deal of time cross referencing your information, and continue to make informed decisions based on the evidence that is available. It is assumed that you already know we don't have the luxury of having herbs and natural substances regulated, and you prioritize your safety. You have chosen alternatives treatments in lieu of, in conjunction with, or following standard treatment.

It is assumed that you know clearly who you are and know why you have chosen alternative or some combination of alternative and conventional treatment. You do not have to justify your reasons to anyone here.

This is not a place for people who are not using alternative treatments. This is not a place to challenge and question others about their alternative choices. It is not a place to gang up on, ridicule, or coerce others to get them to change or substantiate their choices. It's a support forum. Please be supportive. Be respectful.

Moderators, I'm counting on you to protect this thread for the purpose that you have agreed, was what BCO had originally intended for the Alternative forum.

Now if there is anyone left out there that still wants to freely converse about alternatives you use, you can do it here.

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Nov 30, 2013 10:29AM NattyOnFrostyLake wrote:

Thanks for the opportunity, Lightandwind.

I originally went into alternative therapies because the evidence for standard of care did not have compelling enough statistical proof. Even the treatment guidelines were frought with disclaimers. I don't know if anybody here has read them but I recommend them to those who consider rejecting conventional treatment.

If I had testicular cancer, leukemia or certain forms of Lymphoma, I'd sign up for chemo tomorrow. But breast cancer? Not so much. Not enough overall survival because the treatment is so hard on the heart and bones.

I did have surgery and would again. That's my personality. I just didn't want that cancerous lump in my body. Also, statistically, surgery is considered curative about 50% of the time.

Right now, I'm investigating Curcumin again as the result of a conference report and so many studies. I've been taking the Life Extension brand because it's supposed to be the most absorbable. I'm always tweaking my protocol.

Thanks again!

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Nov 30, 2013 11:21AM lightandwind wrote:

Hi Natty,

Always tweaking my regimen here too. I had surgery,+ ooph, and Femara as long as I could. Don't regret those at all. Kinda wish I had my ovaries back sometimes, but might be dead by now if I'd kept them. Was pretty far advanced for early stage so had my back against a wall. Did my research and made a choice that I felt good about. I found some research done on goji (lycium barbarum) and medicinal mushrooms. I decided to add those recently and, took a break on some others. Curcumin, green tea, dim, grapeseed, milkthistle, fish oil, are mainstays. But I also alternate several others. I try to do what I can to support the overall health of my body. I exercise a lot. I look for new research and developments in research. I feel hopeful. I have no expectations but for now I feel comfortable with my choices. I'm here anytime. Thanks for kicking off this thread.

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Nov 30, 2013 11:44AM digger wrote:

So glad we have an arbiter now to guide this forum and to define and defend the rules of this board.

As always, blessings and hugs to both of you! You're in great company!!

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Nov 30, 2013 02:37PM Fallleaves wrote:

Lightandwind, I am using many of the same supplements you are, and also trying to exercise a lot. One of my favorite websites for information is foodforbreastcancer.com They've put together a lot of information on which food are good to eat, and which are good to avoid, for those of us with BC. Although, for some that they have under not recommended, like avocados, they actually show a lot of evidence that they have anti-cancer benefits. Which is good, because I am not giving up avocados!

Dx 7/5/2013, IDC, 2cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/20/2013 Lumpectomy: Right
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Nov 30, 2013 02:48PM dogsandjogs wrote:

I hope to learn from this thread because I haven't really looked into alternative products. I drink a protein drink and eat a vegan diet. I exercise a lot. That's about it. Thanks for starting this thread!

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Nov 30, 2013 02:52PM - edited Nov 30, 2013 03:05PM by exbrnxgrl

lightandwind,

Hope this thread evolves the way you want it to. No challenging or questioning? No, thank you!

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Nov 30, 2013 03:20PM leggo wrote:

Thank you for this lightandwind. Alternatives have given me extra time on this earth for which I will be eternally grateful. I pm'd you as well.

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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Nov 30, 2013 04:55PM jojo68 wrote:

LUV u girls!  I will be keeping an eye on this thread...if it stays respectful, I will participate...if it gets crazy again, I just don't have the time and energy.  I am still doing extremely well on Wong's herbs...hormones in check etc etc...I am going for blood work next week so hopefully all will be fine.  Rock on, Lightnwind!!!!!  xxoo

2012 Stage 3 Lobular Er+/Pr+/her-/Grade 2 7 nodes +/2014 marrow mets/2018 Mets to Bones/ovaries and peritoneum
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Nov 30, 2013 06:26PM - edited Nov 30, 2013 08:38PM by lightandwind

Hi Everyone,

Welcome, It's nice to see you here. Really didn't expect to see this many. I joined bc.org because I found it to be a place of solace and support when I was first diagnosed.There was so much controversy on the alternative threads, I thought I'd avoid them because I felt I didn't need to be a part of all that, especially at such a vulnerable time, having to defend my choices to people who don't even know me. Who needs that?

But alternatives have a place, and a purpose for us and those that use them are in the minority on these boards. We need a place, a space and a voice. Plus, it hurts my heart to see someone ganged up on. I really hope everyone feels the support you probably come to the boards for, and deserve to feel. Proud to be on the road less traveled with all of you.

Wanted to say also, if you want to, please feel free to use this thread to share research based articles which support alternative treatments.

I am starting a new job this week, but will be dropping in as often as I can..but right now..I need a break..

Lots of love...

hope...laughter, and peace

~Lightandwind

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Nov 30, 2013 07:04PM SpecialK wrote:

fallleaves - I am not giving up avocados either!  The rationale for the warning is that they are estrogenic, encouraged mammary tumors in rats, and that animals who graze on their leaves tend to develop mammary gland changes.  I am sure that the quantities consumed also play a part in these findings.  I also use the site you mentioned and for avocados they say you should limit them until more is known about whether they are a danger for those who have been diagnosed with breast cancer.  However, they have so many positive health benefits I think as long as they are eaten in moderation, they are OK. 

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Nov 30, 2013 07:11PM - edited Dec 1, 2013 07:47AM by lightandwind

Here's one that I use. Not advising anyone to do the same. Just wanted to share some articles.

Nigella Sativa (black cumin seed oil).

http://www.ncbi.nlm.nih.gov/pubmed/12724920

http://www.ncbi.nlm.nih.gov/pubmed/23317266

http://cancercompassalternateroute.com/antioxidants-vitamins-and-minerals/nigella-sativa-oil/

There's a lot of research out there on this no clinical trials w/ human subjects and a control group though. I have used it regularly for a couple of years. I put 1-2 capfuls in my smoothies at morning and night, I don't know about interactions w/ other stuff,meds, hormones, etc though.

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Nov 30, 2013 07:15PM lightandwind wrote:

Special K and Fallleaves. I have not heard that about avocados. I am big on food choices, so I will spend some time on that website. Thanks for posting.

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Nov 30, 2013 07:44PM dogsandjogs wrote:

Light, what was your diagnosis? Just wondering----

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Nov 30, 2013 08:17PM lightandwind wrote:

stage III, grade 3, her2 -.5/25

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Dec 1, 2013 03:58AM - edited Dec 1, 2013 03:58AM by Momine

Light, that is interesting about the cumin oil. First time I hear of it. Where do you get it? My mom used the spice itself a lot in curries.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Dec 1, 2013 05:20AM abigail48 wrote:

it's black cumin, nigella sativa, not the regular cumin used here in indian food though it is used as a spice. has paralytic properties (like water hemlock, I know someone who uses water hemlock in very small doses as a sleep help),

thetherapybook.wordpress.com/2012/06/01/the-miraculous-healing-properties-of-herb-robert/

great photos, a geranium

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Dec 1, 2013 06:25AM Momine wrote:

Abigail, thanks, although your link seems to be dead. But wiki has a good and informative entry on the spice.

Light, how do you determine the dose, and how long have you been taking this dose?

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Dec 1, 2013 06:42AM abigail48 wrote:

no dot after book. I'm not good at copying these addresses. the link seems more imforming than the book preview, better prose anyway.

light: I do admire your prose style: a pleasure to read

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Dec 1, 2013 03:31PM lightandwind wrote:

Momine, I buy it at a healthfood store or online. There is a recommended dosage on the bottle. I started w/ less than the recommended amount.

People from Turkey, Russia, Ethiopia and all over the middle east use the black cumin oil for cooking. I wouldn't personally since I haven't done my homework on how it changes chemically when heated.

How do you decide how much olive oil to put in your food? Olive oil (oleuropein) is claimed to have some pretty serious disease fighting potential as well. How do you determine how much olive oil is safe for you to consume?

The info on the black seed oil isn't that new. There is a lot of research out there on alternatives for breast cancer, available to anyone determined to find them.


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Dec 1, 2013 03:34PM lightandwind wrote:

Hi Abigal, great to see you here!

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Dec 1, 2013 05:52PM dogsandjogs wrote:

I thought olive oil was ok---I add it to veggies (maybe 1/4 tsp or so) love the light type - has a nice nutty flavor. Don't use butter or margarine.

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Dec 2, 2013 09:39AM Fallleaves wrote:

That's interesting about the black cumin oil, Light. I recently came across this article about black rice having a lot of antioxidants:

http://www.sciencedaily.com/releases/2010/08/100826093202.htm

I wonder if black foods in general (black rice, black sesame, black cumin, black olives, blackberries) have more health benefits. Maybe black is the new blue (blueberries), or the new orange (carrots, etc.)!

Dx 7/5/2013, IDC, 2cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/20/2013 Lumpectomy: Right
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Dec 2, 2013 10:17AM - edited Dec 2, 2013 10:17AM by NattyOnFrostyLake

I had forgotten that aspirin was part of my alternative regimen.

Really great statistics in this article. http://ww5.komen.org/KomenNewsArticle.aspx?id=6442452008

"Compared with women who reported no aspirin use, risk of breast cancer death was reduced by 71% among women who used aspirin 2-5 times per week and by 64% among women who used aspirin 6-7 days per week. Risk of distant recurrence was also reduced among aspirin users."

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Dec 2, 2013 10:36AM dogsandjogs wrote:

I wonder if Warfarin does the same thing. I can't take aspirin because Warfarin is a blood thinner.

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Dec 2, 2013 10:40AM NattyOnFrostyLake wrote:

I'm not sure if it's a blood thinning mechanism of action, an anti-inflammatory mechanism of action or other.
Since they also discovered people using Heparin got less recurrence, it looks like mild blood thinning may be helpful so the cancer cells don't "clump."

As long as the results are there, I don't know whether we care about the mechanism of action for a non toxic therapy.

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Dec 2, 2013 10:48AM dogsandjogs wrote:

So there is a possible good reason to take blood thinners maybe? (Besides avoiding blood clots)

I really hate being on Warfarin; I can't drink green tea, or use DIM, or use turmeric. But have to be on it due to afibs. By the way, an increase of afibs was one of the many reasons I stopped Aromasin.

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Dec 2, 2013 10:49AM madpeacock wrote:

Hi! I'm 51, and a little over two years out from treatment. I had lumpectomy and internal rads. Oncotype was 8, so no chemo was recommended. Took tamoxifen for about two months and then fired it. On multiple supplements, which have improved my overall health and very effectively treated my autoimmune problems as well. Using the iodine protocol, as I firmly believe it has given me so much benefit for health. I exercise - run - several days a week and also let my boxer drag me around the neighborhood daily. Used to be more active on BCO after diagnosis, but mostly lurk and read now.

I need to look into aspirin as well. I eat a very healthy diet with very little, if any, processed foods. My 88-yo mother-in-law lives wtih us and has congestive heart failure requiring sodium limitations, so fresh is best in our house.

Thanks for starting the new thread! Looking forward to learning from others!

~Joanna~ "Whatever doesn't kill me...better start running." Diagnosis: 08/17/11 IDC 1.7 cm, Grade 2, Stage Ic, ER+/PR+, HER2-, 0/4 nodes, Mammosite completed 10/21/11. Oncotype = 8. Dx 8/17/2011, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/8/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 10/17/2011
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Dec 2, 2013 11:11AM Fallleaves wrote:

I'm a big fan of flaxseed. There are some who worry about it's effects as a phytoestrogen, but I haven't seen any negative studies related to breast cancer. The sloan-kettering summary below mentions it affects radiology, but the study it cites was just a case study and there are several other studies on pubmed that indicate flaxseed can mitigate the side effects of radiation. Might be something to bring up with your radiologist if you're doing radiation treatments. I'm just using it as a preventative measure. There is a trial being put together to compare the use of flaxseed to AI's (http://www.cancer.gov/clinicaltrials/search/view?cdrid=587839&version=HealthProfessional#Objectives_CDR0000587839

http://www.mskcc.org/cancer-care/herb/flaxseed

http://www.ncbi.nlm.nih.gov/pubmed/23557217

http://www.aicr.org/assets/docs/pdf/education/FlaxseedBreastCancer.pdf

http://www.ncbi.nlm.nih.gov/pubmed/24013641 (This is a review study)

Dx 7/5/2013, IDC, 2cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/20/2013 Lumpectomy: Right
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Dec 2, 2013 11:14AM Momine wrote:

Light, thanks, I will check our health food store. I asked about the dose, since some of the active ingredients are potentially toxic (unlike olive oil).

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Dec 2, 2013 11:16AM Momine wrote:

Yup, I take a baby aspirin every other day as well. The benefit is thought to be from the anti-inflammatory action, but since the studies are correlation studies, I imagine nobody knows for sure.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)

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