An Alternative approach to Stage IV Health and choices
Comments
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The Manganiya Seduction by Roysten Able....performed in Melbourne recently..I missed it...the producer was discussing on the ABC how he believes the music has a healing quality, as i was listening to it, i believed him!. http://youtu.be/UxxdLfawoWo
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Had to chime in...my Reiki Practitioner was diagnosed with bc 26 years ago and has done Qi Gong ever since. She is a huge proponent and I am going to follow her advice.
I'm going to try to incorporate more of the Raw foods diet. We'll see how that goes.
My Naturopathic Onc. has suggested similar treatments and supplements. Good to know.
Edited to add that I met a little old lady about 4 years ago in a card shop. She was intrigued by the portable CD player that ds had and told me how she had a cassette player years ago that she listened to her favourite music on. She had been diagnosed with stage iv cancer (didn't tell me what kind) and was given only a short time to live. She listened to her music all through treatment and continues to do that 30 years after her diagnosis! She felt very strongly that there was a correlation between her recovery and the music.
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I just found free Qigong in my town! Twice a week! And there is another place that offers it on an adjustable scale, so I could potentially go on Mondays and Saturdays for free and Wed for a small fee.
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thats great sweetbean!...the yoga center that has qi gong classes here has some free classes in meditation, and an evening where you can discuss vegetarian diet and recipes and they provide a meal!..that part of it is run by donation, but qi gong classes are $10.
PLJ, im starting to believe in the power of music too.
I've finally got most of the blonde out of my hair. so all natural now...dark brown with grey streaks...lol..as much as i am tempted to colour it, i like the fact that i dont have to live with regrowth issues.and the chemical aspect. My friend took some pics of me the other day, they are not too bad, i dont look as exhausted as i usually do, so will change my profile pic soon. My profile pic at the moment is from a few weeks before dx...ive changed alot since then, in many ways. I like that i am reconnecting with life on a deeper level.
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Something that has had me chuckling since last night. I have started writing a blog. Something completely new to me, but im finding it very therapeutic. I hope my daughter can keep it as a record of me, she is more likely to click onto it online than she is to read a diary that will probably end up in the bottom of a box somewhere. Im not very good at diaries...its been months since i have made an entry into the paper version. Anyway, i have been a bit shy about making the blog 'public', and only 2 friends are 'following' it. The other day i thought i would add a blog by the author of the book that really helped me come to terms with this dx, in 'blogs i follow'...and i added a speel about how i found his book invaluable. Last night i was reading over my last entry, and on the right of it i read "orgasm or the moment of death"...i jumped six feet..thought 'what the?..' i clicked to read his latest entry..and its all about good orgasms and the death experience. ok, each to their own...but just my luck that the moment i publicly recommend someone, its going to loook like im a weird follower of a sex guru....lol...I swear that his book is about diet, meditation, and coming to terms with cancer.....lol..
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http://www.ncbi.nlm.nih.gov/pubmed/20160035 Vitamin D deficency and bone mets in mice (if you like the mouse studies)
I was talking to a stage IV woman the other week who said she had heard recently that getting and keeping our Vitamin D levels at 100 or over, can heal bone mets or it activates bone healing activity. Has anyone any information on this?
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the Women's Healthy Eating and Living Study showed not much benefit at all re recurrence of BC with high vegetable/low carb diet....Though this link shows a positive benefit for those on tamoxifen and the 'healthy' diet. http://www.ncbi.nlm.nih.gov/pubmed/20607600 ....?
I think jlw is right, that it is a 3 pronged approach to this disease that will encourage benefit, and not just feed the cancer cells.
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I love freebies! Freebies that are good for you (like qigong) even more.
Music was also very important for my recovery. I listened about two hours a day while dancing. It just makes you leave the worries and anxiety behind. Now down to just an hour a day while exercising.
There's a woman (SophieJean) on the Stage 4 Hormonal Therapy forum who supplements with vitamin D to maintain 100 levels and is NED 5 years. I can't recall if she had bone mets though nor what other therapy she did. Mine tend to get very low in the winter and last winter my onc did not prescribe infusions (insurance companies are clamping down here) so I will have to start supplementing soon.
There is a recent study on the molecular basis for the immune defense activity of cruciferous or green leafy vegetables. Will link later. Wonder if low estrogen makes the benefit more palpable somehow, because molecularly it should benefit everyone, at least according to that one study.
I also have more info on the anti-AGE diet and will share later.
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http://www.sciencedaily.com/releases/2007/01/070124115404.htm
This is in relation to why low estrogen and veggies are beneficial. It looks like estrogen reduces the ability of immune cells to fight cancer. I wonder if this is dose dependent and that mega doses of veggies can surmount the estrogen hurdle? I was thinking of stopping Femara in November for 2 months but this may just make me put it off until next summer when my Vitamin D levels are at their peak.
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Thank you for the great topic. I am triple negative and I am wondering if there are other girls with TNBC who only do alternative treatment. I have been on chemo for a year now. Now I eat strictly vegan but for the last week I added a cup of plain yogurt a day because my calcium was getting low. I am very confused about the supplements. I go to a ND but I am not sure how much he is helping since I've had a major progression in liver last month while on xeloda. Now I am on weekly taxol and avastin. I so don't want to do chemo all the time but what are my choices?
Again, thank you for the great thread! -
sstefano...hi
and i hope you get to hear from other triple negs who do alternative treatments. sorry to hear you had progression on xeloda, and that your supps havent prevented a progression. With all the things we look at on this thread, i have seen a number of articles on triple neg and the benefits of a low carb/fat diet..for earlier stages, a 40+% decrease in recurrences..who knows with stage IV, but we can try hey!...
I am suspicious of supps too. especially with all the media coverage lately about multi vitamins, and supps increasing our chances of dying by 45% !?..i really want to look into it here, though it will probably freak us out a bit as so many of us use supps...but its important to face the facts i think. I remember seeing info on multivitamins last year and a connection between them and an increased breast cancer risk. There followed a huge advertising campaign by vitamin companies, and it drowned out, or obscured the information. I would love it if there was someone here who could help work through this issue.
I have been a bit anti supps since i used to work in a pharmacy...dont laugh too loudly, but i was given a title and a badge saying 'senior vitamin adviser' based on 3 x 2day training sessions with each major vitamin company. That enough scared me...who was i to offer advice on such potentially dangerous products with 6 days training! (i ended up leaving the job) but during the training. we were told that if something only has a placebo effect with recent trials, still recommend it. also, there was a general belief that very large concentrated doses of substances that have shown to be effective in nature, will have benefit...now it seems maybe not...anyway, any triple negs have any handy hints/lifestyle choices that they believe have helped them living at stage IV?
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I think supplements are just like meds. There has to be some evidence of need before taking them. Supplements while on chemo -- even more tricky. They may counteract the anticancer activity of chemo according to some studies. Taking them temporarily due to nutrient deficiency, say after chemo, when only desserts taste good, may be justified to build up nutrient stores.
Re: anti-AGE diet. I was finding it hard to wrap my head around the idea -- makes me depressed. But I still think it's worth trying and seeing this article on how it benefits aging skin has given me more motivation.
It looks like vegetables do not contain much of AGEs so broiling or baking them doesn't matter. To see tables with estimated relative AGE content of foods (with cooking methods), google Uribarri glycation June 2010. B1 and B6 vitamins are AGE-inhibitors so I'm thinking to (temporarily) supplement with spirulina which has B vitamins and is supposed to be an antihyperglycemic anyway until I get into the swing of things. When stir frying, I only do so now for less than a minute and pour water to get the heat down right away.
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sorry about my singing crickets joke...its just been so quiet here lately, and i didnt have the strength to keep it all going by myself..But i want to add something that is interesting i think. Firstly, i want to say that I hope princess, eve, impositive,and others dont go..its like one by one we lose the inspiring, enthusiastic ones. its important to have a balanced approach available to us to discuss openly, that was the purpose of the alt forum, and the endless discussions that got us the alt forum...so please hang in there you dear people...
this is my little story. Just before I was dx'd last year...I had intense cravings/memories of the coconut oil my mother used to use when i was a kid. I just kept saying to myself...i want to find that coconut oil. I want to wear it every day (since then Ive heard the benefits of coconut oil) after my dx, and before i had read about any anti cancer diet etc...I was feeling a bit nauseous, and unwell (maybe the tamox was kicking in)..anyway, all i wanted to eat for about 3 days was grapes, purple, green, didnt matter, i had just grapes, and water...only later did i read about the 'grape cure' theory. Then it was pomegranates..i kept thinking about them, picturing them, wanting them...and they are a big cancer fighting food. Recently, i have been a bit obssessed with VitD..making sure i get my levels up, getting as much sun as i can...i started thinking i want my food to have sun too!..i want to eat food i have just picked...and i started to put my fruit in the sun...(sounds weird)..last night i was looking over 'cheap' cancer fighting protocols...this one is inexpensive, and relatively natural, simple..and is meant to be done in combination with a basic anti cancer diet...Eve: wheatgrass has heaps of laetrile in it!...i was a bit shocked to read the theory that if you let the wheatgrass absorb UVA orB rays (either with a UVlight globe or the sun) (the sun would take a while they said) the unproven, but safe theory is that, like blood, the chlorophyl will absorb the rays, and increase effectiveness of the wheatgrass...I think sometimes our bodies try to tell us something!...seems harmless anyway,.. this is the disclaimer that comes with the 'therapy":
"The main reason the Independent Cancer Research Foundation, Inc. (ICRF) is researching this treatment is that it is very inexpensive and when perfected it may apply to many different health conditions, such as viral pneumonia, staph infections, the flu, and cancer. As with all ICRF research treatments, this treatment has already been proven to be safe. Our current research is only regarding its effectiveness. We do not release a treatment to the general public unless we have very strong scientific evidence it will be effective and we are totally confident of its safety.
Having said that, because this treatment may kill massive numbers of microbes very quickly, this treatment may create significant amounts of a common discomfort called Herxheimer's Reaction. "Herx" can make a patient feel very ill. However, this is a temporary discomfort."...
If there is anything unsafe about this idea, that im not seeing, can someone let me know?...basically, its about juicing wheatgrass, placing under a UV light, (i would use the sun i think) and drinking it lol...but i like the idea...I also want to try to find farms willing to let me pick fruit and vegetable produce regularly...i wonder if that exists in Vic/Aus?....'living food' is kind of my new obsession...but very hard to find when you live in the suburbs!...any ideas would be very welcome...its been getting me down a bit lately....living in the 'city'....
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I have read about studies showing that supermarket produce exposed to UV light have more nutrients. Makes sense. Can you tell I'm a city girl?
One reason to lose weight in the winter when UVB is scarce in my latitude: Vit D is released from fat stores.
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That is very interesting about the wheatgrass. I have some sitting on top of my fridge. The powder form. I hate hate hate the taste but if it is that good I will try and swollow some atleast once a day. How much do you take? Do you buy it fresh and juice it? Maybe it tases better that way.
I do believe if we learnt to listen to our bodies it will tell us what we need. We have just for so long been used to ignoring it, or atleast I have. Trying to be nice to it now.
There is so much on here to read from when I was last on. Will have to catch up.
Thanks for keeping this going thats life. You are awesome!!!!!
Here we have a farmer that you can order weekly from that brings you your supply of fresh produce from his gardens. Sadly it is seasonal. Hard when we live so far from where alot of things grow. Our grocery bill is so expensive eating Organic. I have to feed a family of 5.
I am looking into site specific immuno theraphy. It is from Austria. My ND is going to be starting a clinical trial soon. I don't think I can get on it but am looking into doing it in Vancouver. Have to see what the results are like for breast cancer. Just wanted to through it out there.
Have a great day and Happy Halloween!
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that'slife -- I wondered about that cricket video! Thanks for explaining. Thought I was missing some inside joke or something, since I'm new to this thread. Thanks, too, for keeping this conversation going. It's one of my favorites... I spent a whole evening reading through the entire thread a few weeks ago and found it quite inspiring!
Can you explain a little more about the benefits of coconut oil? Is it anything specific to BC?
A while back I started using it on my skin. But after it absorbed into my system through my skin for a few weeks, I noticed I began to have a sort of craving to eat it.
This is funny... right after I shower and rub it on my legs, my little white Westie comes running into my bathroom to lick it off!
~lulubee
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thats-life, I'm still here! I wondered about that video too, lol....thought I had missed something. Now that you have explained it....it's rather funny...takes me a while...I'm blond
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I love coconut oil. What brand do you ladies use? I bought Spectrum this last time because I found it at my local haunt. I have to drive a little further to the health food store. I like that it is in glass but it is mechanically pressed and doesn't have that coco-nutty smell. Not sure I like it as well as some I've used.
It's weird how our intuition can show us things if we are just tuned in. I am learning to follow that little voice or feeling or whatever you want to call it. It has led me down this alternative path. I am leaving on Thursday to go to an alternative cancer care clinic to get treatment. I feel like I have been led there and I feel very good about it. I am embarking on a juice fast while there and I am definitely going to incorporate wheatgrass.
The place I am going to, uses something called UVBI/Photoluminescence or Ultraviolet blood irradiation (not to be confused with common radiation exposure). It involves pre-oxygenation of the blood, followed by passing a small amount of blood through crystal tubing, exposing it to a specific frequency and high wattage, germicidal UV light, and returning it to the body. Im not sure if that will be my protocol but since you were talking about UV light it made me think of that. How long have my doctors told me to avoid the sun!?? Ugghh...not anymore.
I live in a rural community. My daughter lives in the city. She gets a weekly case of seasonal locally grown organic fruits and vegetables delivered to her house. I tried to get this same company to deliver to me but I'm too far out past their boundary lines. I am currently searching for a similar company near me. Maybe there is something like that where you live? There is a website called localharvest.org for those here in the US to find the same sort of thing. Sorry thats-life, I dont think that would help you but perhaps there is something like that where you live but if not, maybe you could find some farmers who would be interested in starting something like that. There is one I have found where they have a host drop off site on a certain day of the week and people go there to pick up their share. That is the one I will probably try and get involved with.
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3littlegirls: i dont know about the powder form of wheatgrass. But i did read that anything new we take on should be introduced slowly...an eighth of the recommended dose on the bottle or of any new diet protocol. If these things do work...at stage IV, we need to slowly kill off the microbes..and not in a big hit (same with chemo..) so its recommended to drink heaps of water while changing to a diet or supp...to help eliminate debris. Apparently wheatgrass works best with an alkaline diet...i.e. no sugar, white flour, dairy, meat etc. I found this link which i thought was really interesting:
http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=40&abstractID=33403
and this one, a trial on the potential benefits while on chemo :
I was just reading up on how much to add to a juice, i think i will start very slowly!..im just going to add a tiny bit to a juice till i know how it affects me. ..like 25mls ...I am interested to hear what the powdered recommendation is per day?...I want to grow alfalfa too...its the live food thing again.
hi impositive...im glad you are here..well, im excited for you trying the new treatment center, i hope you get excellent results, i hope you share your journey with us too...i was looking around Aus for treatment centers, and theres not much available. I think theres an issue with the dsmo thing here...but The Ian gawler foundation has a conference on soon, and im going to try to go. I just today read on his blog about a trial on meditation ..this is a snippet:
"If meditation can lengthen your telomeres, does this mean it lengthens your life? A major new study from America, involving Australian Noble Laureate Prof Elizabeth Blackburn, is one of a number of recent studies that tantalisingly suggests this may well be so.
This new study, conducted by a big team at UC Davis and led by Tonya Jacobs and Clifford Saron, measured telomerase activity in the participants of a three month, intensive meditation retreat. Known as the Shamatha project, and with the retreat itself led by the renowned B Alan Wallace, participants meditated in group sessions twice daily, and in individual practice for six hours each day.
The most comprehensive scientific study of a meditation retreat yet conducted, there have been some very interesting findings. Firstly, telomerase activity was 30% higher in those on the retreat compared to their matched controls. There was a positive relationship between these telomerase changes and positive psychological changes.
Saron speaking with the due caution of a scientist says " The take home message from this work is not that meditation directly increases telomerase activity and therefore a person's health and longevity. Rather, meditation may improve a person's psychological wellbeing and in turn these changes are related to telomerase activity in cells, which have the potential to promote longevity in those cells".
....anyway, maybe there is actual physical change and benefit from practicing meditation, though the participants meditated for about 6 hours a day!
Re coconut oil: I bought health reflections 100% pure organic cold pressed coconut oil, which is made in fiji. the only problem is its in a plastic jar...same as you impositive, i couldnt find one that ticks all the boxes. but i do know that cold pressed is important. The container does say 'contains no hexane'..whatever that means, and also 'fair trade organic'...which is good. I have a fijian friend who gets it in a jar, cold pressed, i will ask her what brand hers is. Maybe i could get some farmers involved in a 'live food' list ..i want to be able to pick it though...I will look into it tonight.
lulubee: check out impositive's antifungal thread. coconut oil has antifungal properties. I was freaking out the other day, as i had these huge C shaped things growing on me, and i thought they could be skin mets. I had never seen anything like them before. onc said ringworm, gp said shingles...canesten antifungal cream hardly made a difference, hence i was starting to worry, as they were spreading...my friend , and heidi, said to try coconut oil...and they are fading fast, almost gone....im so relieved. i have read heaps of things on coconut oil, im sure i read something about coconut oil and BC, but cant find it in my many notes anywhere...if i find it, i will write it here.(sometimes my brain is fried) if you search coconut oil in search...i know its spoken about often here. But as an alternative to toxic cosmetics, moisturisers etc..im really happy with the switch.
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I'm sure meditation can help us fight cancer, whether through telomerase activity or not. Exercise, by the way, also increases telomerase activity. Anytime you're not stressed has to be beneficial!
My father, who is 90+, started taking a spoonful of coconut oil after meals two months ago.When I spoke to him he was like a new person. His caregiver told me that his appetite increased and he's much more alert. She had attended a seminar given by a Dr. Fife on the health benefits of coconut oil.
For cosmetic purposes I'm using mostly argan oil. Coconut oil makes me hungry. Not good if I can't stop thinking of food. Drinking it would be another story. I'm sure it would go with coffee. I should google Dr. Fife and see what he says about cancer-fighting properties. I do drink coconut juice and eat coconut meat. So maybe that's enough.
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I'm reposting something I just posted about alcohol because I think the ladies on this thread will find it relevant.
___________________________________________________________The problem with cancer treatments is that they never completely eliminate ALL of the cancer cells. And the ones that are left over are often resistant to treatment. So at that point, it is about making the terrain (your body) as hostile to cancer as possible. So cutting sugar, meat, dairy, all the things that feed cancer, is very helpful. Beer and liquor are very bad, cancer-wise. Red wine is the best choice because it has antioxidants, but drink it with food, so it doesn't cause a blood sugar spike. And probably limit yourself to one drink a night.
Alcohol makes your natural killer cells sluggish, impairs macrophage activity and reduces T cell counts.It also increases your levels of oxidative stress, which impairs your body's inflammatory response. Result: more inflammation, which has been linked to cancer.Alcohol also slows down your metabolism, which makes you gain weight. Also not good for breast cancer.
Our cancer started with ONE cell that went haywire. So making the terrain as inhospitable to those cells is important. I know that it sucks. I miss my old life, too. And while I don't think that we "caused" our cancer, I have also read enough to know that diet/lifestyle does make a difference. I also know that there are plenty of health nut/vegans that get cancer. However, I don't think that they are in the majority. I considered myself a health nut before I got diagnosed, but I was still able to make a lot of changes which means my lifestyle wasn't as healthy as I thought it was.
hdangelbaby, I'm sorry that your friend said that. She is probably scared out of her mind for both of you. People say the strangest things to reassure themselves that they won't get cancer. But, if I were you, I'd cut out the alcohol except for special occasions. Totally up to you, though. -
Guess I won't have that glass of wine tonight.
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Red wine would be ok. At least that's what I read from sweet bean's post. (thanks sweetbean!) especially if one controls the weight gain with exercise and boost natural killer cell activity with the same. Am I a broken record or what? I do love red wine.
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Any argument for red wine never gets old
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Hi all, hope you are doing well...:) Im having a brain MRI next wednesday...because i mentioned some odd headaches, vision issues, and fatigue to my onc....ooops..so will keep you posted on the result..if my BC has spread, then im going full on into an alt protocol..probably the budwig protocol, and serious relaxation..serious juicing..at the moment, i have been only exchanging crappy food for beautiful food...doing the physiochi..trying to meditate...but i have been a bit disheartened, and cranky the last few weeks...so if anyone wants to help me keep the faith..get motivated again, go for it
meanwhile i found this link to pick your own organic fruit, if anyone in Australia is interested in having access to live food
http://www.pickyourown.org/australiavic.htm
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http://www.breastcancer.org/treatment/targeted_therapies/new_research/20111108.jsp
This is about the panvac vaccine. it was a small study. The respondents who did best on the trial, had limited damage from numerous chemo's. Its intent is to stimulate the immune system..with a pox virus vaccine...interesting.
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thought i would add this post that i posted for evie on another thread:
"This is a link titled 'what should breast cancer patients and survivors eat during Herceptin treatment:
seems like good information evie...There was a mention of using an antioxidant vitamin supplement while on herceptin may not be a good idea, anyway, read it if you are interested, and maybe google for more info. I dont think they are selling something!"
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. Recently a pharmist said that grapefruit inhibits meds. I wonder why?
2007, 2008 dx dcis highgrade, Jan 2011, mucinious stage 1, Sept 2011, IDC high grade her2+ (3+)er + pr+
Diagnosis: 10/4/2011, IDC, Grade 3, ER+/PR+, HER2+ -
hi eve, i found this link of drugs affected by grapefruit, or grapefruit juice. Grapefruit should not be consumed while on tamoxifen either.
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This is the latest post on bco on 'chemo brain'
http://www.latimes.com/health/boostershots/la-heb-chemo-brain-breast-cancer-20111114,0,3252617.story
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