An Alternative approach to Stage IV Health and choices
Comments
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Just a little over a year ago I went on a anti-yeast diet and lost 20+ lbs in about 6 weeks. Basically, I stopped eating breads, and store bought juice. That was it! I didn't have much of a stomach, but what I had disappeared in a few weeks. When I get sloppy the tummy is back...not big, but it's there. I was 156 and now I'm about 133 to 137. I also feel it's ok to celebrate everyonce in awhile and treat ourselves to a special dessert.
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evebarry: It's amazing isn't it how easy it is to lose weight when you cut bread or white stuff out of your diet. The same thing happened to us. We feel so much better. We went to a hamburger place tonight, and my DGD and I had veggie burgers and I just didn't eat my bun. I splurged on sweet potato fries....yummy!
Surgery is over and I'm healing fine, but still waiting for the final path report to tell me the margins and nodes are clear. Almost got into it with a friend on the phone tonight who has decided she is going to "manage" this entire process for me. She doesn't seem to understand that conventional doctors do not differ that much on their treatment options for early stage, and as long as my research and my doctors theories are on the same page, I don't need ten other opinions. So far they have been. I do have an app't with a naturopathic dr. next week to get his opinion. His website has tons of information on preventing bc recurrance...lots of stuff we've talked about on this site like iodine, thyroid, supplements and so on. Can't wait to hear what he has to say.
Is your surgery still scheduled for the end of the month? Keep us updated. I keep praying for a good positive outcome for you.
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In reading about new drugs designed to make cancer cells self-destruct ("Detonating mitochondria in cancer cells" at http://www.medicalnewstoday.com/releases/222926.php) I'm re-learning the importance of nuclear factor kappa beta. (We discussed this in this thread previously).
Nuclear Factor-kappa Beta (NF-κB) broadly promotes survival in tumors by halting
the processes that lead to apoptosis.From this source, "Nuclear factor-kB inhibitors as sensitizers to anticancer drugs" at http://www.nature.com/nrc/journal/v5/n4/abs/nrc1588.html, NFkB activation by malignant tumors causes cells to escape apoptosis and some chemotherapy agents also cause NFkB activation, contributing to chemo resistance.
Quote
NFkB inhibition prevents tumour resistance to chemotherapeutic agents, so development of NFkb inhibitors could increase the efficacy of many anticancer agents.
It has also been demonstrated that steroids and non-steroidal anti-inflammatory drugs such as COX2 inhibitors block NFkB activation.
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As for natural sources of NFkB inhibition, I found a table in the Nature article listing the following:
Natural products that inhibit nuclear factor-κB
Soya isoflavone genistein from soyabean products
Caffeic-acid phenethyl from honeybee propolis
Benzyl isocyanate from cruciferous vegetables
Resveratrol from skins of red grapes, fruits and root extract of the weed Polygonum cuspidatum
Curcumin from turmeric curry
Lupeol from various fruits and vegetables such as olive, mango, strawberry and fig plants
Epigallocatechin-3- gallate from green tea
Lycopene Carotenoid in tomatoes
Human breast milk
Andrographolide from Andrographis paniculate
Guggulsterone from Commiphora mukul
Sesquiterpene lactones from Asteracease plant
Panepoxydone from fungi
Cycloepoxydon from fungi
Gliotoxin from fungi
The ones I don't recognize as everyday foods I won't assume to be safe.
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Got my final pathology results...clear margins and nodes. Best gift I could have received for Xmas!
All the best to everyone and thanks for letting me post on the Alternative Stage IV thread. You ladies are so brave and I have learned so much from all of you. My life is forever changed for having known you.
I send you prayers and healing energy!
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Awesome news, kaara!
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Really happy for you Kaara
I have really enjoyed your input too. VR posted this article on the stage IV forum. I found it so incredibly interesting, I want to post it here. It really does reinforce to me that there is a delicate balance between treatment and no treatment/Alternative treatment decisions, that are very personal, and also, maybe, viable:
"To assist in defining the objectives of treatment of MBC, it is helpful to first examine the natural history of untreated breast cancer and patterns of relapse. Since patients with MBC display variability with respect to the course of their disease, it is also helpful to determine whether identifiable subsets of patients have specific expectations and goals of treatment.
Natural History of Untreated Advanced Breast Cancer
The natural history of untreated advanced breast cancer has been described based upon the records of 250 women with inoperable advanced breast cancer who were admitted to Middlesex Hospital from 1805-1933 and observed from the onset of symptoms until death [6]. Within that series, 44%, 18%, and 4% of patients were alive at 3, 5, and 10 years, respectively. For patients who survived beyond 10 years, none survived beyond the nineteenth year of onset of symptoms. The median survival time was 2.7 years, which is within the range (30.2-39.8 months) confirmed by other studies involving over 1,000 cases of untreated breast cancer dating from 1926-1962 "
http://theoncologist.alphamedpress.org/content/8/6/514.full
Heidi: Love your goals for next year
You are doing so well, I pray this stability continues for all of us -
Thanks Heidihill!
thats-life: Good to hear from you again. Hope you are enjoying your summer! I hope you don't mind but I quoted one of your tips for living with stage IV from your blog because I thought someone really needed to hear it. I think they are inspiring!
I had an app't with my integrative physician yesterday, and it was awesome. He took a long history on me and asked a lot of questions. He is doing urine and blood workups and put me on supplements that will boost my immune system. Glutathione, iodine, vitamin C, and a couple of others that I can't spell, let alone pronounce. Once the blood work comes back, he is going to start infusions of a Meyer's cocktail which are high dose vitamin and minerals...calcium, magnesium, B vitamins, etc. He is scheduling me for a thermography scan to see if there are any other suspicious areas lurking in my breast that are too small to be seen on mammo.
He isn't a fan of radiation, but didn't really discourage me from doing it. I have read that if bc is on the left side, which mine is, that there could be heart issues. I don't want that because I already have a mitral valve problem, so I will have a lot of questions for the rads oncos when I see them, and I will have my studies in hand. I'm not going to be bullied into doing something that I don't feel comfortable with. I think I would be willing to risk a recurrance to spare my heart.
I will update on my progress...this is something I really want to do...see if I can keep this early stage bc in check with proper diet and supplementation. It feels right for me.
Stay strong everyone and have a wonderful holiday!
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Bump for bbburns
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Dear Kaara,
If you decide to go with radiation, ask about IMRT. My tumor was on the left side close to the chest wall. My radiologist wrote up the medical justification based on minimizing the impact of radiation on my heart and it was approved despite being much more expensive. I was really impressed by all the planning that went into designing the radiation. There was a slightly different pattern everyday. No SE for me. Good luck with whatever you decide.
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Sweetbean, who has been a valued contributor on this stage IV thread, started a thread to clear the air on any misconception that a healthy immune system can 'cure' cancer. It is a good point to make. The information provided here re food is not so much about boosting the immune system. It's about a number of processes (or that's what we have been trying to provide here) It's about the importance of immune strength in general while living with cancer, as there is a larger amount of energy expended/needed while LIVING with cancer, especially at stage IV, as well as while going through treatment.
It is also about AntiAngiogenesis: restricting blood supply/fuel supply to tumours that have vascular involvement by using antiangiogenesis foods. I saw a great segment on Dr Oz with Dr William Li who is researching in this field. I remember 3 of the 5 foods he stated would directly help in slowing cancer cell growth. One was cooked tomatoes 3 times a week, and Bok Choy 3 times a week, as well as artichoke hearts 3 times a week. I have tried to find the link to the segment, but can only find many other links to Dr William Li. If you are interested in more information on this, google his name.
Evidence based scientific research (BC San Diego Symposium) concluded that eliminating or reducing starch in our diet can slow progression or reduce risk of recurrence of BC. Again, this starves cancer cells of a food source.
As all people live with cancer cells that our immune systems often keep in check over the years, stray cancer cells can (theoretically) be controlled by a healthy functioning immune system. Tumours do release enzymes to disguise them, yes. For tumours, we need the approach of either starving them, with a low carb/low starch/low sugar diet (or a drug like Metformin) or blocking pathways, as well as killing the cancer cells....either with standard treatment options, or with diet and exercise. Rebooting T cells to enable them to identify cancer cells again, is a goal of scientists.
In my local newspaper the other day 2 people died after attending a dinner party. it was the mushrooms!..the host had gathered them herself from under oak trees in our leafy eastern suburbs, other guests are being treated for liver failure. We should never underestimate the power of food. If we can starve, or slow the growth and spread of MBC by a change in diet, then I want to use it as a potential tool. Maybe our cancers are pre destined to progress at their own individual rate, as the figures on the link I provided in my last post seemed to indicate (even without any treatment, some women lived many years), but assisting the body seems very rational to me. Symptom control has improved with the introduction of chemotherapy and other treatments, there are interesting advances in research on Metformin, aspirin, vaccines, parp inhibitors (as Sweetbean has discussed) Here is a recent article on alcohol (red wine specifically) and humans! (as opposed to those drunk mice)
"....Researchers sought to determine whether red wine mimics the effects of aromatase inhibitors, which play a key role in managing estrogen levels. Aromatase inhibitors are currently used to treat breast cancer.
Investigators said the change in hormone patterns suggested that red wine may stem the growth of cancer cells, as has been shown in test tube studies."
So hopefully there arent too many people here who believe a healthy immune system is the only tool/goal to deal with BC. Sometimes a supressed immune system is beneficial..But I hope people understand the goal of this and other threads on the alt forum that discuss diet and exercise. It is not a reflection on what we have done, or where we have 'failed'...but of potential tools to use while living with this disease. A potential tool to starve cancer.
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Interesting...could you discuss more about a supressed immune system being beneficial.
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THANK YOU, that's-life! That precisely sums up how I look at it, and hopefully what you've shared here will help others understand. That's what we all need -- greater understanding of how to play the hand we're dealt. And we should always play to win... but we all have various definitions of winning. Some people assume that we crunchy types follow these odd dietary patterns because we think winning means getting cured... but most of us are really just not that naive.
Winning can also mean having the best quality of life possible for as long as possible! If I can feed my body in a way that it can give me energy and stamina to live with this disease with more strength and vigor and power... even if it doesn't make me live a single day longer than I would have on a standard American diet... that is still winning in my book. I want to be as healthy as I can be for as long as I can be here!
You're beautiful, that's-life. Thanks again.
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Hi Ladies,
I haven't posted here since the thread first started. I got a little depressed and took a bit of break from reading or posting. In Sept. I was on Navelbine and Herceptin and had went to the Block Center to get set up on a healtier diet and supplements, then one month later my scans showed progression to the liver. So, I am now on Xeloda and Tykerb, still doing the diet (sometimes I cheat
) and supplements. My scans a few weeks ago showed me as stable. I few a questions and some comments now that I am caught up on the thread.First, does anyone know if I can take B12 with Xeloda? I have heard so many different things and when I asked my Onco she said she would have to check, I don't see her for a while so was wondering if anyone else had been told it was okay or not.
I have a wheat grass supplement (pill form), I wonder if I am getting what I need from it since it is in pill form or if I should change to juice. What do ya'll think? I also have a coconut oil supplement in pill form. Pretty soon I wont have to worry about eating because I am taking so many pills I will just fill up on them. lol.
After catching up on the thread I ordered a Qi gong video. It is really good and so relaxing. http://www.amazon.com/Qi-Gong-Beginners-Chris-Pei/dp/B001JXPBS8/ref=sr_1_2?ie=UTF8&qid=1326380340&sr=8-2 This is the video I got. The mans voice is so relaxing and the surroundings around him are just so beautiful, I want to go there. I am going to start taking yoga once a week and I already go to the gym and do cardio and weights twice a week so hopefully I am doing all that I can in the exercise department.
Last thing, I've seen a couple comments (not in this thread) about what not to do or what to do to not get to stage IV. I try to not be sensitive about this but lately it has bothered me a little bit because it makes it sound like I caused it to come back. Before I was dx with stage IIIc I lived a healthy life style, I had a healthy diet, didn't drink, didn't smoke, didn't take birth control pills, etc. I still got cancer. With my inital cancer dx I made a lot of changes. I knew if I didn't give it 120% and this came back, I would kick myself, so I gave it my all and it still came back.
I have met woman who were athletes, vegans and did everything right and were dx with stage Iv from the get go. I've also seen it the other way, women who were stage I,II or III to begin with who didn't change unhealthy habits and they didn't have reccurence. Don't get me wrong, I'm not saying in anyway diet, exercise and healthy living don't make a difference. It would be narrow minded of me to think that way. I do think it has helped me tolerate chemo better, feel better and have a healthier state of mind. I also hope it slows the beast down.
My dad died of cancer when he was 49, I've always wondered if there was something passed down through minor genes. He was also exposed to agent organe, I know they haven't linked bc to that but it's there in the back of my mind. Anyone else here whose dad was exposed to agent orange?
Sorry for the book!!!!
Angie
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What animal studies have shown is that healthy choices can postpone the onset of cancer, maybe even long enough that you can die of something else.
My dad was exposed to radiation in Hiroshima and Nagasaki. I do think that might have had something to do with my cancer and other health issues.
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Heidi- I don't know of any studies but maybe some of the other ladies do.
Did your dad have cancer? I think maybe this weekend I will do some internet searches on the agent orange thing and those exposed to radiation. I know that in my dads unit over half had cancer or had already passed away from it.
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Welcome back, Angie. I could have written a lot of what you just wrote! Completely agree. We can only do what we think is best for ourselves, but we cannot control the outcome.
You know, back when I was Stage 1, I was also scrapping for any shred of hope that there was something, anything I could do to avoid going to Stage IV. That's just inherent in our nature --survival instinct is strong and there's nothing quite like a cancer diagnosis to wake it up. So it doesn't surprise me when I hear women at lower stages make those kinds of comments, and I don't let it steal my peace. I remember being where they are, and how I thought when I was there.
Those women are still on the front face of the mountain, and we are on the backside. Perspective is everything.
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LuLu- funny I had written almost the same thing in your last paragraph but since my post was so long I deleted some of it. I feel that changing my diet/lifestyle makes me feel I still have some control over this and does give me hope. I also remember before my recurrence feeling like I've got keep this away. So it doesn't bother me that it's being said but maybe how it's said. And honestly, it doesn't bother me that bad just mildly. Very true about perspective....one thing cancer has taught me is a different perspective!
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Hi Ang,
I hope I have never written anything to cause you pain - if I have, I apologize. I always post on these alt threads because I hope that, through diet/lifestyle/CAM therapies, we can enhance the effectiveness of our conv treatment (if we are doing it), or reduce the risk of recurrence, or slow the cancer in the event of mets. I hope that my comments have not been interpreted as "blame," because I know cancer is tricky and that people can "do everything right" and still end up with progression. However, I like to pass on info when I have it, to give everyone every available tool at their disposal.
That being said, I met with a new oncologist in Florida today -I'm down here doing several concerts and I have to get Herceptin. She is a firm believer in diet/lifestyle/CAM therapies in addition to conv treatment. She seemed to feel that oncologists that don't acknowledge the link are doing their patients a disservice. It was gratifying to find someone in the medical profession that felt that way.
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sweetbean: Where is your new oncologist in Fl? I'm in the Ft. Lauderdale area and would be interested in having one that was more versed on diet/lifestyle. The ones I have been to don't even mention it, and I've had to go to an integrative doctor to get the kind of diet and supplement advice I need, at a very high ticket price!
The minute I was dx, diet and lifestyle changes became my first line of defense. I figure there is no way I could be hurt by making the changes, and they have been very positive for me thus far, just from the standpoint of making me look and feel better. My vitamin D levels went from 27 to 54. Now, if I'm able to keep the bc from recurring, by keeping this committment so much the better.
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Sweetbean, No one on this thread has said anything like that, I promise. Everyone on this thread is very supportive and helpfull. I don't know if you've ever ventured on some of the older alternative threads but they tend to get heated. This thread is the first "alternative" I have really posted in because everyone posting here has been so supportive and respectfull of each other. I thought I knew just about everything I could about supplements and diet but I have learned soooo much more from ya'll.
I also want to just add again. I am in no way saying diet and a healthy lifestyle don't make a difference.
Kaara, that is great about your D level. No matter what I do my D has always been really low....7 last time. When the Block Center check all my vitiman levels, they were all good except D. I haven't had it checked in awhile, I probably should.
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Another thing Sweetbean....that is great that you found an onco like that! It seems so many don't even want to talk about supplements.
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ango74: It took almost a year of taking 5,000 IU's daily to get my D levels up to normal. I'd like to get them to 70, which is what is suggested for fighting cancer recurrence.
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Ang, my dad did get cancer at age 75 but is now 91. He's a trooper.
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Ango74, great, I'm glad that I haven't said anything to cause you any stress. (That would be so uncool!) I like this thread a lot, too, due to its incredibly respectful tone and exchange of information. The onco that I saw in Deerfield Beach is Dr. Reshma Mahtani at the Sylvester Cancer Center. She was really cool. Alas, I am only here for 10 more days - I am singing in several concerts down here and needed to get Herceptin. So it's back to CT at the end of the month.
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sweetbean: Thanks for the info...I've heard of the Sylvester Center in Deerfield, it's very good. I saw my RO today and he is a believer in the diet and lifestyle program himself, in fact, he is also following a low carb diet and we talked at length about it. It's comforting to know that the tide is shifting with regard to this.
I have to decide on rads, probably by the end of next week, and I'm still quite confllicted. It seems so overkill for such a small stage bc with no node involvement. If I go for it and it returns, then my only option is mx. If I roll the dice and forego rads and it returns, then I could do more surgery and rads at that time. It's a tough decision for me. Chemo will not be involved as my oncotype score was 13, according to my RO. Somehow he had this info that I was not going to get until Monday when I see the MO.
Good luck on your concerts sweetbean...are they open to the public? If so, PM me as it would be nice to try and see one.
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Thanks, Kaara -they are open to the public, but I'm pretty sure they are sold out. PM me, though - I may be able to get you a comp ticket -the performances are in Coral Springs on the 15th, and in Boca Raton on the 16, 19, 23, and 24.
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I am really glad your onco's are talking about diets with you. I really think now adays it's just as important of a talk as is what chemo or radiation. I love my onco, I can talk to her about diet and supplements. She tends to frown on some supplements but is on board with my diet. My only problem is I had to bring these up to her. When I first started seeing her and would bring up supplements she was a bit negative about them but after 4 yrs of dealing with me I think she knows I'm going to do my own thing and that I research things as much as I can.
I did go up to the Block Center in Sept. It was a really wonderful experience and I was very impressed with them. I know people have talked about Dr. Blocks book on here, I highly recommend it and if you can make the trip to Chicago it is worth going there. I think they even do the blood testing from anywhere. I think they send you the paper work and send you to a lab to have your blood drawn, then it is sent to them. They test your vitamin levels, antioxident levels, inflamation levels, etc.
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ango74: I am so fortunate to have a very good holistic physician here in Ft. Lauderdale that is doing all of that for me and has me lined up for some vitamin infusions and supplements that will boost my immune system. I am reallly disappointed because my RO told me today that I could not be on any antioxidants during my rad therapy which would sideline my vitamin treatments for six weeks, provided I decide to go forward with rads.
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Hi ang, glad to see you back, hope you are going ok with the depression issue you mentioned, its pretty easy to go there while we are living with this disease every day isnt it
Just wanted to add this link, thought it was interesting:
Parabens in Breast Tissue Not Limited to Women Who Have Used Underarm Products ScienceDaily (Jan. 11, 2012) - New research into the potential link between parabens and breast cancer has found traces of the chemicals in breast tissue samples from all of the women in the study. Parabens are commonly used as preservatives in cosmetics, food products and pharmaceuticals. As the research shows that parabens are measurable in the tissue of women who do not use underarm cosmetics the parabens must enter the breast from other sources.http://www.sciencedaily.com/releases/2012/01/120111223348.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fbreast_cancer+%28ScienceDaily%3A+Health+%26+Medicine+News+--+Breast+Cancer%29
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woops, sorry about the huge words..
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