An Alternative approach to Stage IV Health and choices
Comments
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Michelle, just a thought. I had consistent stability then just one tumor grew. As it was in the liver (there are many there but the rest stayed the same), my onc sent me for RFA which knocked it out. They got two others too. Where is this tumor of yours? Is a local treatment possible? Anne
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In the USA the RFA And cryoablation are finally being used but we have to look long and hard to find a specialist. They are my first choice, before chemo, rads or surgery, if I am ever a candidate. I tried to get them to do this for the lymph nodes but too dangerous with the main artery there. darn
thats life - I think your new onc needs to write a book on the new light of things in conventional meds, all the details they miss. Thyroid is so often involved in bc, as are all hormones being off, that I just wish it was a standard of tx for anyone, back to the basics kind of thing, esp with tx that can change the levels too, either alt/trad or conv.
LOVEEssa
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Hi Lemonsoda,
My tumour is also in my liver. How much longer where you able to stay on the original treatment. Was it also Tamoxifen? I am not a huge fan of my new Onc. My old one had to go on permanent disabilty for heart related issues (I'm guessing stress is off the table) anf way she was the head of BC Oncology and a whack of other lead positions. I always felt better with her even though she was a straight shooter. He is brand new and squeaky clean. More chatty but sometimes he shoots himself in the foot and we all know we clinge to everyone word and sign they give us.
I will ask about the RFA. We sound like we have very simialr cases. Thanks for the suggestions.
Must say I am normally walking head up and doing fine. This progression news came at a very stressful busy time and I am finding it weighing me down.
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Kaara,
I have the same diagnosis as you and am living in Miami. I am wondering which naturopathic doc you are working with.Is it marc Rosenberg?
thanks,
robin
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It was suggested I post this here so copying and pasting the following post:
I had a meeting this past weekend with a lovely couple who I found by word of mouth. I mentioned in another post that I would share the info they gave me with anyone who was interested, so here is the story.
The wife went for a hysterectomy 11 years ago, and when opened the found so much cancer that they closed her up. What she had was neuroendocrine cancer of the uterus spread to the bladder. They gave her chemo and rads at the same time to shrink the cancer, then sent her to a major hospital to get surgery. When she went there, they wouldn't do the surgery because she didn't have long to live anyway and they would have to remove her bladder, which they didn't thing they should put her through being that she was going to die, so they sent her home and said 4-6 months. Her husband went to work researching and he basically gave her anything he could find that sounded like it might work. They didn't give an exact protocol, but gave me pages of info about the herbs she took and where she got things. I haven't been able to read every detail of every page, which a lot of it explains each thing and what it does, but I have made some sense of all the info to pass on to you:
Make sure the diet is 80 percent alkaline and 20 percent acid.
Detox the body. First the colon, then liver, then kidneys. She recommened the ones sold by Dr Schulze at www.herbdoc.com.
There are two different teas to make and drink lots of. Essiac tea is the first one and they added additional herbs to the standard 4 herb formula. The essiac is made of sheep sorrel, turkey rhubarb, burdock, slippery elm. The ones they added are california buckthorn, dandelion, red clover, montana yew tips.
The 2nd tea is made of 11 herbs which are rose hips, pau d'arco, violet, oregon grape, chaparral, st johns wort, yellow dock, prickley ash, suma, dong quai, buckthorn.
If u look it up on the internet you can find instructions for making the tea. Both made the same way. She gave me a list of where she gets things, but I bought the tea from her and I don't see it mentioned on the list. I know there are places online to get the herbs and also there are places that sell essiac, but she buys the herbs for essiac and packages them together to make what she called generic essiac.
Then there is a list of supplements that she takes:
Liquid viyamin plus-vitamin shoppe
Liquid minerals- sams club
Vit e -D alpha
Vit d3
CoQ10 - 100 mg
L-carnitine- 500 mg
Selenium - 200 mcg (no more)
Colostrum
Biodefense NK+AHCc
Olive leaf extract 500 mg
Graviola 699 mg
Modified citrus pectin
Poly mVA
Beta glucans
Calcium-magnesium-vit d liquid
Digestive enzymes
Omega 3 softgels
Noni juice
Pau d'arco
Probiotics
Asparagus extract
Germanium
After reading that list I'm going to call and ask her if she takes all of that every day. She gets things fron all different places: swanson, vitamin shoppe, any vitamin store, and a lot of stuff from a place called Herbal Healer Academy.
Anything you can get in liquid form is better than tablets.
They also had a machine to ionize water and a rife machine. They have a few friends who come in daily to use the rife.
I think that about sums it up. It was about a year later that she had scans where no cancer was found. So there it is for what its worth. Of course everything doesn't work for everyone and she had a different kind of cancer but this obviously worked for her. I know she was drinking huge amounts of the tea when she had cancer, and now drinks one cup a day. They didn't really have a protocol, just threw everything at it so to speak. I am going to do the teas and the alkaline diet and the 3 cleanses. As for the list of vitamins, not sure if I can manage that or not. If anyone has questions let me know and I will try to find it in this pile of papers as I am still leaarning myself.
Of course I am not giving medical advice, just sharing what another has generously shared with me. Thanks, HLB :-) -
Many thanks to HLB for sharing that last post I have changed my diet and juice daily as well as take supplements and have been doing this for a year I am presently stable. I have bought the Essiac herbs and keep meaning to make the tea so thanks for reminding me. Certainly think anything is worth a go when you are at stage IV.
Love and light to all
sarahlou xxx
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The documentary has been removed by the user.
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Hi all, haven't logged on for a while, needed to reboot, go over everything, sometimes we get lost in all the misery and forget to live. Many thanks to hlb from me too..I logged on to add this interesting article from my email acc today:
"Bachmeier's research centers on curcumin, the polyphenol responsible for the characteristic color of curry. Curcumin is well tolerated and is therefore, in principle, suitable both for prophylactic use (primary prevention) and also for the suppression of metastases in cases where an established tumor is already present (secondary prevention). In a previous study Bachmeier and her colleagues had demonstrated that the substance reduces statistically significantly the formation of lung metastases in an animal model of advanced breast cancer...."...article below:
Prostate Cancer: Curcumin Curbs Metastases, Study Shows
ScienceDaily (Oct. 12, 2012) — Powdered turmeric has been used for centuries to treat osteoarthritis and other illnesses. Its active ingredient, curcumin, inhibits inflammatory reactions. A new study led by a research team at Ludwig-Maximilians-Universität (LMU) in Munich now shows that it can also inhibit formation of metastases.
Prostate cancer is one of the most prevalent malignancies in the Western world, and is often diagnosed only after metastatic tumors have formed in other organs. In three percent of cases, these metastases are lethal. A research team led by PD Dr. Beatrice Bachmeier at LMU Munich has been studying the mode of action of a natural product that inhibits the formation of metastases. The compound is found in turmeric, a plant that has been used for medicinal purposes for thousands of years, and is a major ingredient of curry.
Bachmeier's research centers on curcumin, the polyphenol responsible for the characteristic color of curry. Curcumin is well tolerated and is therefore, in principle, suitable both for prophylactic use (primary prevention) and also for the suppression of metastases in cases where an established tumor is already present (secondary prevention). In a previous study Bachmeier and her colleagues had demonstrated that the substance reduces statistically significantly the formation of lung metastases in an animal model of advanced breast cancer.
Mitigating metastasis The new study was designed to investigate the efficacy of curcumin in the prevention of prostate cancer metastases, and to determine the agent's mechanism of action. The researchers first examined the molecular processes that are abnormally regulated in prostate carcinoma cells. Breast and prostate cancers are often associated with latent or chronic inflammatory reactions, and in both cases, the tumor cells were found to produce pro-inflammatory immunomodulators including the cytokines CXCL1 und CXCL2.
The researchers went on to show that curcumin specifically decreases the expression of these two proteins, and in a mouse model, this effect correlated with a decline in the incidence of metastases. "Due to the action of curcumin, the tumor cells synthesize smaller amounts of cytokines that promote metastasis," says Bachmeier. "As a consequence, the frequency of metastasis formation in the lungs is significantly reduced, in animals with breast cancer, as we showed previously, or carcinoma of the prostate, as demonstrated in our new study."
Curcumin and chemoprevention Bachmeier therefore believes that curcumin may be useful in the prevention of breast and prostate cancers -- which are both linked to inflammation -- and in reducing their metastatic potential. "This does not mean that the compound should be seen as a replacement for conventional therapies. However, it could play a positive role in primary prevention -- before a full-blown tumor arises -- or help to avert formation of metastases. In this context the fact that the substance is well tolerated is very important, because one can safely recommend it to individuals who have an increased tumor risk."
A daily intake of up to 8g of curcumin is regarded as safe, and its anti-inflammatory properties have long been exploited in traditional oriental medicine. Men with benign hyperplasia of the prostate (BHP) are one possible target group for prophylaxis, as are women who have a family history of breast cancer. The agent might also be valuable as a supplement to certain cancer therapies. At all events, curcumin's beneficial effects must first be confirmed in controlled clinical tests. Bachmeier is now planning such a trial in patients who suffer from therapy-resistant carcinoma of the prostate.
.......hope everyone is going ok
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Thanks for that info about curcumin! I have been taking it and I also take boswellia. I read an article about boswellia preventing/reducing brain mets, so that's why I started taking it. Most people use it as an antiinflammatory for joint pain. Just yesterday I read an article about how the curcumin and boswellia work especially well together. I think it might be why I have not had any side effects from letrozole. I just made my first batch of essiac tea plus three additional herbs that were recommended, and its smells and tastes awful imo, but I can tolerate it.
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Am sipping my Ojibwa tea now, I buy from Michelle, trained by the Anishinabee Grand Medicine Society (Ojibwa, Chippewa, Ottawa) www.ojibwatea . com which is where Renee Cassie was given the tea formula. She was the nurse in Canada who brought cance people back from their death bed time afte time with the four main herbs, no other. The others were added due to patent issues, they had to change recipe.
Michelle at the . com cultivates fresh organic all the time. I would not use the red clover with a female cancer, info handed down to me from some herbal pros. But in a batch, not a huge deal once here and there, I suppose.
The Ojibwa tea really helped me start detoxing bcz this last week was hard, took too much oleander to begin with, while taking the black and red raspberry.... cancer cell die off too quick, swelled up like a bullfrog, had hard breasts and neck and everything was so swollen except my feet and ankles which are usually swollen, nothing else swells. The tea released all that by morning, two 1/2 cups in the night. thank goodness.
Had to stop almost my entire protocol, bl and red raspberry seed powder, the oleander and companion minerals for oleander absorption to get back on my feet.
Now I know the oleander works. I bought from the same place I buy my colloidal silver (bacteria fighter, which is most needed) Utopia Silver, they have a Rose Laurel OPC with a Membrane Complex companion supplement which I bought three mo ago and did not take until now (I do not sell this, in case there are lurkers wondering what I am up to *_*, just sharing what is working for me) sssooooo was waiting for kinesiology to register postive before I would take it. But w memory problem, I forgot the amount to begin and started at high dose, augh. Start w one dadada and end up at 5 in a few eeks.... I started w five or more, who knows and took for over a week and whammo. LOL If cancer does not kill me, I will. LOL I will be able to write a book on how to not kill yourself off w alternatives when healing from cancer. It's been a real roll down a rocky cliff sometimes.
sssssooooooo The Ojibwa tea is so good for building the blood cells, liver detox, toxin release, inflammation release, blood purifying. We always need these and it helps colon cleansing, heart oxygenation, energy too.
Thanks thats-life and HLB for the info.
LOVEEssa
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What does the ojibwa tea consist of? And what do you think of the 11 herb tea that I posted about? I did remember what u said about the red clovers when I got all the stuff. Maybe next time I will eliminate it. Always love your posts. I'd like to send some kind of a thank you gift to the couple for all that they shared and the time they spent with me. I did run off some info on a few things I take that was not on. Her list, and a cookie recipe made with all healthy ingredients. Maybe a dinner gift cert I don't know. Ideas welcome :-)
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Re triple neg:
" Vegetable-Derived Compound Effective in Treating Triple-Negative Breast Cancer, Research Suggests
ScienceDaily (Oct. 17, 2012) — A new compound created from a rich source in vegetables including broccoli and brussel sprouts has been developed to combat triple-negative breast cancer (TNBC). This research is being presented at the 2012 American Association of Pharmaceutical Scientists (AAPS) Annual Meeting and Exposition, the world's largest pharmaceutical sciences meeting, in Chicago, Ill., on Oct. 14 -- 18, during Breast Cancer Awareness Month.
TNBC accounts for approximately 15-20 percent of all breast cancer cases in the U.S. It is one of the most aggressive forms of breast cancer; it grows faster, spreads to other parts of the body earlier, is harder to detect on a mammogram and recurs more often.
Mandip Sachdeva, Ph.D. and Chandraiah Godugu, P.h.D. from Florida A&M University, in collaboration with Stephen Safe, Ph.D., from Texas A&M University, have evaluated the activity of novel C-substituted diindolylmethane (C-DIM) derivatives and demonstrated that they have superior anticancer activities. Sachdeva's study reveals that these synthetic compounds derived from diindolylmethane (DIM), commonly found in various types of cruciferous vegetables, can be used to treat several types of cancer, including triple-negative breast cancer. C-DIMs are also being investigated for their cancer prevention activity.
"Targeted treatment options for TNBC are limited; current treatments, such as infusions, result in poor patient compliance and increased toxicity," said Sachdeva. "We are confident that the compounds we are currently working with are an effective treatment for triple-negative breast cancer. These compounds are safer for the patient than current treatments available."
In contrast to existing anticancer drugs, the diindolylmethane compounds are orally active, so they could be available to patients in pill form and safe to take daily. When taken in combination with existing anticancer drugs, the diindolylmethane compounds can effectively decrease the number of treatments a patient receives." -
That's awesome news! Wonder what the difference is between that and the DIM that people are taking.
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Here is a new exciting non toxic way to fight bc cancer on so many different levels. I am in a rush but here are the links. Well worth the read. I hope My ND explained it all in a mini lecture and I taped it. Hopeing the website will explain it all. Just wanted to share with you all before my brain forgets. http://db.tt/Y1EfFp6z Here is the link to order it. http://www.avemar.com/aww/canada
Hope your all doing well. I will try and come back later and catch up.
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Thank you very much for sharing those good news.
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3littlegirls,
I have also been very encouraged by what I have read about Avemar and Avemar Ultra. Thanks for posting that link - it looks like really good stuff!
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Phew! I have finally finished reading all the posts in this thread. It is really very informative. But I don't know how much I can remember.
I came to this thread searching for help for my cousin who is dx with breast cancer. She is 63. In 2010, she had lumps removed from her left breast and they found no cancer, and so no treatment.
About one year later, in 2011, the lumps reappeared, mastect, and it was stage 2b, ER+, PR+, HER-. CT can showed no mets. She had 6 rounds of chemo (FEC), and 15 sessions of radiotherapy which she completed in April this year. She has been on tamoxifen since Feb 2012.
Then they found a small lump in her right breast. FNAC said only atypical cells found. Subsequent lumpectomy found that it was tubular cancer, with no spread to lymph nodes. However, mastect on Oct 4th found it has gone to the lymph notes, and also CT scan showed suspiscion of mets to liver, lung and kidney!
She is still awaiting the report from the bipsy. We are from Malaysia where there are two types of health - those who have can afford private health care, and those who have not goes to the govt health care which is also good but over burdened and therefore is slow moving.
I have been searching the internet hoping to find a 'miracle' cure. Has anyone heard of or used Breastdefend? It is produced by the same doctor who made PectalSol-C Modified Citrus Pectin. Apparently it works well with MCP.
http://www.econugenics.com/t-breastdefend.aspx
If so, I will like to hear your comment on it, as I am thinking of ordering it for my cousin. Does it conflict with Tamoxifen?
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Hi ahnick, nice of you to research for your friend, I remember how overwhelming it is in the beginning, I had no one to help research things...I'm sure she appreciates it.
Re miracle cures...well...there are many claims, diets, supplements etc...it's a very personal choice to try them, I would just say make sure you research extensively, and with a sceptical mind, before recommending anything to your friend. I think you will find people are very hesitant to recommend....on this topic we discuss possible advantageous lifestyle choices...I would always be comfortable recommending a plant based diet and low carb diet.. look into caloric restriction too. I am not aware of breast defend . Someone else may be able to help you. There are some very knowledgable women here who understand supplements, sending my support to your friend. Take care -
I have been taking a supplement high in those type of vegetables for almost a year...I feel it can't hurt at all to add this supplement to my diet in addition to the green smoothies I drink almost daily. Life extension has a new supplement called Breast Support which contains all of the nutrients needed to support breast health. I'm going to look into it when I get back to Florida as their headquarters are there, but you can also order online if you subscribe to their program.
My BMI is down to 20 which is well in the normal range, and my weight is holding between 121 and 124...down from 140 a year ago. I feel and look much better. People who haven't seen me in a long time think I had plastic surgery...LOL! NOT!
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That's life and Kaara, thank you for taking time to respond to me. I truly admire your fighting spirit.
I have not heard about Breast Support, but will look into it. Wonder how different it is to Breast Defend.
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Has anyone looked into the Avemar? I read about it, and going to ask onc about it, although he does not agree with alternate therapies.....but, if it is not hurting anything then why not?
I found the website to order it for 159.00. Has anyone tried this yet???
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Kaara,
What kind of green smoothies do you drink?
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kfontaine: I make them in my Vita Mix mixer...kale, romaine, spinach, apple, strawberries, coconut water, filtered water, two scoops of protein powder, blend and drink! Delicious and good for you.
I was exposed to a major case of flu from a friend, and I didn't even catch it. My immune system is in top notch condition from my diet and supplementation program.
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Kaara,
Thank you!!
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Hi ladies,
I just found out Letrozole let me down. I was only on it 2 months and I have more growth in my liver. One tumour is now over 5 cm so it scares me. I start chemo next week. ;( Getting a port this time. I am already starting to up my DHA. I was feeeling so good and thougth for sure shrinkage. WTF!?!
Anyway just wanted to report in and keep you posted. I find this to be where I feel the most comfortable.
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WTF, indeed! So mad Femara let you down and in such a sneaky way, too. Hope Taxol treats you better. There was a thread on how fasting before chemo helps to make it more effective. Could this be something for you?
http://community.breastcancer.org/forum/121/topic/795402?page=1#idx_5
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Michelle,
I am sorry Femara did not work. But the chemo will kick its butt!!
The port is a good choice. I love my port...well, as much as one can love their port.....but really it is very nice and does not bother me at all. My port is in my arm and is very convenient...
I am also a liver metser....
What is DHA? And what chemo are starting?
Kristen
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Hi michelle...this is where i feel comfortable too
kiss for you x..i have been reading about the ''almost at trial stage" for the (drug?) that blocks the pathway that cancer finds after tamox has blocked its first option..for those resistant to tamox...i will upload it here, i wonder if you would be suitable for it?..hang in there, is 2 months long enough for femara to have kicked in?...can you stay on it while doing chemo?...i will be thinking of you...yes, the fasting idea seems viable x -
Thanks Heidi for the info. I am going to try and fast. It looks like it could be a win win. I am just not sure how I will be able to do it but I am going to try. I like food. Although this week with all the stress I ahve lost 5 lbs. Not to worry tho I have some to spare.
I was super skinny until this last year and I think Tamoxifen was starting to mess with my metabolism. I am back at the gym and playing floor hockey so putting getting things turned around. Dam cancer. I wonder if we could eat celery and maybe a low glycemic salad???? Water and lemon here we come. I am also going to be going to Vancouver for hyperthermia. It is suppose to help with getting better shrinkage. I am going for NED!!!!!!! -
Cant upload link from the macbook. its calles Vismodegib, for those who are interested.
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