An Alternative approach to Stage IV Health and choices

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  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    sweetbean:  A three day juice fast is not without protein, as there is plant based protein in all types of veggies and fruits.  What you are getting are very dose dense nutrients that sustain your body and give you energy.  The patients doing the Gerson Therapy have nothing but juice and raw whole foods during the entire time of their treatment, which sometimes lasts up to six months.

    When you are doing the fast, the fruits and veggies must be put through a commercial grade juicer that captures the majority of the nutrients.  You can also do smoothies in a Vita Mix blender for the same efffect and you will get the good fiber as well.  Some people who are very sick with cancer cannot handle the fiber, hence the juicing.

    Before you undertake a fast, it's probably best to check with your naturopath for specific instructions.

    lulubee:  I know I've posted my list of supplements on the Stage IV Alternative site...it's probably back about 10-12 pages.  I joined the site in Sept, but didn't really start on my program until final dx in November.  I think I posted sometime late December.  Let me know if you can't find it and I'll list them again.  

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited February 2012

    sweetbean,

    Yes. We do have to factor in age. And 2/3 of all breast cancer patients are over age 55 at time of diagnosis. That means that an even larger number, possibly 3/4 or more, are over age 50.

    There is no part of our signatures on these boards to make this apparent, so everyone goes along sort of tending to think that "most" breast cancer patients are "like" their own situation, whatever it is. You are young, and more likely to retain more estrogen and have less issues with weight gain, but the vast majority of breast cancer patients are older and more likely to have chemopause weight gain issues, particularly with recommendations for chemo being given at earlier and earlier stages.

    I wonder how effective oncotype actually is for older women.

    A.A.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Hello - what a gret grat discussion, been reading on bc.org for hours and is late so will not even begin to read this thread until tomorrow.

    One thing I told myself was I would start getting 10 hours of sleep a night, or at least a nap to equal that, and lately i have not been doing this sleeping well thing.  I believe the sleep up to 8 hours is maintenance, anything over is for healing.  I must be more careful.

    I am Stage IIB but suspecting the Stage IV to be announced next week when all tests are in.  

    I woudl love to see this as a vert thorough thread on Alternatives where women and men post their protocols to the detail and their experiences with each, as that would be a research of our own.   What is working.  What works for bc, what works for different stages, who fairs best on what. I hope that I find a lot of the details here. 

    Right now, I cannot  wait to dig into what everyone has shared!  So excited to come back tomorrow.

     Will post my protocol soon too.  I transition from one protocol to the next right now, using several supplements.

  • CLC
    CLC Member Posts: 1,531
    edited February 2012

    I just came across this thread and your discussion is very interesting, engaging, meaningful, scary.

    I just read the article about the impact of radiation treatment on production of aggressive cancer stem cells.  As usual, the scientists are focused on what science they are learning.  That is their job, and I do not disagree with their interest in what they can learn from watching the mechanisms that turn these cells over to more aggressive cells.  They should be studying that. 

    What is so typical of how this all works is the statement that we shouldn't be alarmed and we should continue status quo.  What would make so much more sense is if we stop, reconsider the risk assessments of when radiation is a better choice than not doing it, given this new information.  It is fine that the new information will lead to more research on the genetic mechanisms.  It should also lead to a rethinking of our epidemiological decision-making for the millions of women who must make choices today.

    It is yet more evidence that we must each be our own advocate and pick and choose the right pathway for ourself, even when it does not agree with standard care.

    I made choices that were not the recommended choices.  It was difficult to explain to my bs and mo why I was opting for mx rather than lumpectomy/radiation.  It was difficult to explain to my bs why I was forgoing reconstruction.  It was difficult to explain to my mo why I was declining tamoxifen.  That was all difficult, and I was only facing dcis.  My deepest respect and admiration goes to all of the women facing more advanced cancers who have the strength to stick to their guns and do what they know is right for them, even when no health professionals fully agree with the decisions.

  • thats-life-
    thats-life- Member Posts: 1,075
    edited February 2012

    Hi CLC, I agree that we need to be our own advocates, and read information given at dx with ears/eyes alert for the catch words/phrases used by oncologists, surgeons, in trial result literature, in our information packs etc. Im kind of bitter and twisted since diagnosis (lol) as i feel I have had to waste precious time sifting through what seems to me like treatment propaganda, carefully worded stats, and patronising encouragement from health professionals. The most interesting thing I have learned here lately is that once a patient is labelled as non compliant, the doors are opened more for discussion of alternative options to standard protocol, and for more honest discussion IMO. I have AA's discussion thread to thank for that. (though i think i am already labelled non compliant at my cancer center, for saying no to Zometa)

    Essa: gosh, hard waiting for those results I bet...hang in there :) I hope you are clear of a stage IV dx, but if not, glad you are thinking ahead. I so so agree! I would love this thread to be a place where we sift through the maze of options and trials and errors, in the spirit of support, encouragement, and truthfulness. It is a unique opportunity, as it is a non biased website, (as opposed to a website run by a supplement company for example, where I am unsure of the validity of the information provided) to share our journey :)

  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2012

    Sorry, I've been away from a PC and can do short posts only on my phone.

    Thats life, I didn't know then what I know now about cancer metabolism (which is still pretty basic) so I didn't know that cancer was making my muscles weaker, depriving them of nutrients. I was getting weaker, losing weight, and had increasing pain. I could not carry my own small bag. What fixed the problem was chemo. By the second cycle the bone pain was gone. I could feel the other tumors shrinking. Of course chemo weakens you as well in a cumulative way. So the cachexia weakness was soon to be replaced by chemo-induced muscle weakness. But because of steroids I could feel an energy boost at least half ot the time. My system had to get used to doing without that support for the next few months after chemo ended. Iron and vitamin d infusions helped, both done at my breast center. In the long run, what really has helped me get stronger was lifting weights. I hired a personal trainer to teach me. I do it on my own these days but it was worth every penny to get me started. I've managed to maintain my bone density despite stopping bisphosphonates, being postmenopausal and taking Femara. I have more muscles now than I ever had in my life. Probably also more testosterone (produced naturally).

  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2012

    Lulubee, I don't have a complicated protocol. Simple is best so I can actually follow it. I try to eat at least 8 portions of fruits and vegetables, and some nuts everyday, beans (including soy) whenever I remember. I was on a broccoli sprout spree at some point but I think that affected my thyroid - they found a benign nodule. I had forgotten that raw broccoli is goitrogenic. I cook with lots of garlic and spices, including curcumin. I deliberately don't eat to fullness because I don't like the feeling. In our household we fight over who gets the smallest portion. I love fish and have it often. I spinkle olive oil on anything I can. I drink orange, coconut or papaya juice after exercise. I take dairy products for calcium and for the conjugated linoleic acid. Because my aches and pains are no longer as bad as they used to be, I don‘t take magnesium supplements anymore but drink ovaltine which has some magnesium as well as calcium and b-vitamins. I also used to take chondroitin and fish oil for the joint pain. I have maybe one sweet a day and pretty much avoid added sugar (except for the ovaltine).  Last year I had been fasting about 17 hours a day in the hopes of starving cancer at least that much daily. At the moment I'm cutting down on starch and have lost some weight as a result. As soon as I lose another kilo, I'll try the 17 hour fast again. I do a lot less grilling and baking now as well as limit processed foods.

    I drink wine in moderation. It has a blood thinning effect which may prevent mets. I drink lots of tea. Chamomile tea is anti-bacterial. The less inflammation we have, the better. I use this to wash my mouth too. Warm drinks flush viruses in our throats down into the intestines where it‘s usually too acidic for them. I take sage drops and drink chamomile tea to help me sleep.

  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2012

    On another thread in the Clinical Trials and Research News Forum, Timothy provides links showing the net benefit of radiation therapy. I tend to think that this one piece of research does not yet overturn all the previous research done showing the benefit of radiation therapy. Although we know that ioniozing radiation can be oncogenic, nobody really knows yet how that happens. People who are exposed to a lot of radiation can develop cancer but can also live to a ripe, old age.

    http://www.guardian.co.uk/world/2010/jan/06/hiroshima-nagasaki-survivor-dies

    If I could be so lucky.

  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2012

    AA, I have considered the fact that weight lifting increases testosterone and androgen receptors a possible factor contributing to my health. I am 100 percent ER+ and most likely have andrgen receptor positive cancer as well, a good prognostic indicator. Some researchers even say adding testosterone to hrt reduces breast cancer risk. I thought I needed to gain strength anyway, why not try weight training? It was tough, but now I've got biceps.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    Heidihill,

    Your story is remarkable!  I hadn't thought of the weightlifting - I'll have to look into that.  It sounds like you have a very well-thought out strategy - that's awesome! 

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    Kaara, do you like the Gerson therapy?  I've always been a bit underwhelmed.  What do you think?

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    sweetbean:   I think you would have to be very committed to go on that program.  You are supposed to drink up to 13 glasses of juice daily, plus all raw foods and coffee enemas daily.  Also there are supplements to take as well.  I know someone who did it for a year and it put her cancer in remission, but then she stopped and the cancer came back, so it isn't necessairly the cure.  We do a lot of juicing and raw foods, but don't know if I could do that much daily.  I started using my Vita Mix blender and doing smoothies which is easier for us.

    I just watched the movie "Living Proof"...about the doctor who developed Herceptin.  What a struggle he had to get that drug through the trials.  So many lives saved as a result...hopefully the cancer vaccine will be a similar breakthrough.  Will they give herceptin without chemo?  I know Eve was trying to get it and I think she succeeded.  It almost sounded in the movie that the chemo did not help HER2+ but they gave it anyway.  It was never fully explained.  Great movie...renews your faith in doctors...the pharmaceuticals...not so much! 

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    I think that you are right - the people I know that have done Gerson, the cancer always came back if they went off the protocol.  And I think the protocol is really  hard to maintain in your every day life.  However, it does speak to the power of diet, doesn't it?  I do morning smoothie with broccoli sprouts, water cress, kale, blueberries, Vega protein mix, Amazing Grass ORAC blend, ground chia seed and ground flaxseed.  It is not delicious, but it is anti-cancer!  It's also pretty filling, considering it is a smoothie. 

    I need to buy a juicer and start juicing more regularly.  It is a great way to get to the 15 veggies a day that is my goal.

    research and pharma and academic labs - unfortunately, the current system is a real disaster, which is why so few breakthroughs happen.  It's not for lack of want, or talent, or money.  However, I think we are seeing a shift to a better research process, so I am hopeful.  Success stories like Herceptin really point out to people the possibilities available if we can fix the broken research system. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    I have read in a few placces that the Gerson  Therapy was developed to detox the liver.  Though one can see it is so much more, it is true that the liver needs so much support andwhen it is screwed up, all is not well.  Hubby wants me to use that therapy for now, he is even juicing and buying the produce, I let him, someone can have my back, I will follow as long as it is goodfor me.  But to do that alone, i canna.  I also take other liveer support supplements, Ojibwa tea and others.  But for deadend Stage IV, this and the Budwig and so many other intense therapies have proven to cause remission on their own.  But, the cure, no, that is still more therapies in addition, imo. 

    I have decided to use Poly MVA but as soon as I decided to go into the trial, I did kinesiology and got a not now answer, so waiting.  Seems my present protocol is the one, and it is very strong.  But am waiting for test and bone scan results due Monday or Tuesday.  Either way, Hubby and I discussed and we would still be following this protocol, so we are not really afraid of the test results, but still.....

    Is good tohave a place to discuss so much, weigh options, learn more and meet others in the same boat, esp the alternative choices boat.  

  • 3littlegirls
    3littlegirls Member Posts: 853
    edited February 2012

    Just a quick blurp about coconut. It is high in copper and copper promoteds blood vessel growth.  Which is good for tumours. I've been told to only eat it occasionally.  I have so much to read to catch up but can't right now.  

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited February 2012

    heidihill,

    I too think careful weight training is of major benefit, and I use the monitored testosterone supplement to help me to build some muscle. Unlike some who favor exercise, I admit I don't particularly like having to put the time in to do it and that it worked better for me when it was simply part of my paid work time, but it is key enough to me that it is truly worth doing. I'm glad you are also benefitting from it.

    A.A.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    The coconut oil gaveme such pause - since I do consume organic cold pressed coconut oil every day - such pause that I spent 2 full hours on a tangent to be certain I was not harming myself.  Below are some references I am going by.... the Weston Price link, go half way down page to cancer and breast cancer.

    Then there are links for the copper and angiogenesis, Dr. Judah Folkman - then Vitamins and Minerals, which includes blood vessel growth and strengthening from Vit C which we consume and infuse with, esp during cancer, so I am wondering what that means, because like ii keep saying, I am afraid to eat anything anymore. That is why I stopped to check seriously, and I do now know I will SKIP THE OLIVE OIL.  Flaxseed oil and coconut oil, andorganic butter from raw dairy, that's enough for me.  But Johanna Budwig does state in her book no fats for advanced cancer except the flaxseed oil / organic sulfured protein dairy 'mayonaise'.   Even though the coconut oil was high on her list of fats with high, right chains.

     http://www.westonaprice.org/know-your-fats/new-look-at-coconut-oil

    http://www.raysahelian.com/angiogenesis.html 

     http://www.angioworld.com/angiogenesis.htm   physiological and pathological

    http://www.organicfacts.net/health-benefits/minerals/health-benefits-of-copper.html        copper is the third more prevalent mineral in body,  copper benefits, but coconut oil not listed as a source, though a whole coconut does offer 12% US RDA

    cannot find copper or any of the minerals in the converter  http://convert-to.com/568/organic-raw-coconut-oil-conversion-with-nutrition-facts.html

    http://www.oldthingsforgotten.com/vit_min_chart.htm 

    Back to reading.  Love u guys for being here.

    Essa Diane

  • cheery
    cheery Member Posts: 311
    edited February 2012

    Essa

    I know what you mean by being wary of what you eat. I've read on ano forum the latest research that Omega-3 may be bad for BC ladiesFrown Yes, you heard it right..

    http://www.foxnews.com/health/2012/0...revent-cancer/ 

    Re flaxseed, I ate it for a while with cottage cheese but stopped because of it's highly phytoestrogenic and difficult to be absorbed by the body. My initial biopsy was ER+ but downregulated to ER- after surgery. We will not know whether it was an error during biopsy or not but since flaxseed oil is not easily absorbed by the body, I decided it was probably easier to get my omega 3 from fish and olive oil..until the above report came out..lol..

  • cheery
    cheery Member Posts: 311
    edited February 2012

    Heidihill

    Thanks for the encouraging post on the Hiroshima survivor. I guess I'll have to remember to add more seaweed and dashi-based soups to my diet when I have my scans.

  • thats-life-
    thats-life- Member Posts: 1,075
    edited February 2012

    Cheery, yes i saw that too..omega 3's...after all the hype about them! I think anything to excess will cause problems, as we are such complex organsims, and science has just scraped the surface. But i am grateful that they are scraping the surface of molecular biology now, i think this will lead to an understanding of cancer ...eventually.

    I also saw a recent study result on high glucose levels actually reigniting a cancer cell's ability to kill itself!...along the lines of the fellow joylieswithin believed had the key to cancer treatment. The fellow who's research led to the use of PET scans..what was his name?...sorry, its been a long day, im pooped. I will try to upload the study, quite interesting.

  • thats-life-
    thats-life- Member Posts: 1,075
    edited February 2012

    Otto Heinrich Warburg...that was his name.

    I cant find the glucose study...my organisational skills have flown out the window!!! after 17 months on Tamoxifen (I blame Tamoxifen anyway:)

  • 3littlegirls
    3littlegirls Member Posts: 853
    edited February 2012

    Thanks Cheery, I have been popping Omega 3's everyday. I just fired an email with the link on to my ND.  Aghhhh is right.  I find the more I read and learn the more I don't know what the hell to do.  Starting to think everything in moderation is the way to go.  

    I didn't mean to freak you out with the copper and coconut.  My ND didn't want me being vegan because of all the high copper foods vegans eat as protein substitutes.  Lentils, beans etc.  They are all ok in modereration but as a vegan (cheating vegan)  I ate a lot of thosew things. It is one theory in the pond of many.  

    My ND was in Pheonix for a Naturopathis Oncology convention.  I see him on Tues and am excited to hear everything that was presented.  

    So glad we have this section to share alternatives.  Thanks for starting and keeping it going thatslife.   

    I also have just started to add Hash Oil to my regime. I can't do it during the day but I take it before bed.  I get scanned in a month so will see if I get anything out of that.  Stay tuned. lol

  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2012

    Cheery, I also believe the Japanese diet does have something to do with it. Come to think of it, Japanese are into fish and seaweed, but not so much fish oil. Hmmm. These days I only take fish oil when I can't readily get fish, like up in the mountains.

    3littlegirls, does the hash oil make you sleepy?

  • thats-life-
    thats-life- Member Posts: 1,075
    edited February 2012

    3littlegirls: please share any news with us from your NP's conference!, It would be very interesting to disect :) ...and why hash oil?....I think what happens is science or history tells us something is good, companies then start promoting "high doses must be better!", science then studies the effects of high doses, media tells us it could be dangerous in high doses, companies ignore the media and start a bigger media campaign promoting their product...and round it goes. Or so it seems to me. When i saw the study results of multivitamin use and increased breast cancer risk, I was quick to tell everyone i knew!...I noticed a huge media campaign then started on TV, with 'trusted healthy celebs' promoting multi's for about 3 companies. Over time, the information is lost in numerous new studies, public statements downplaying the neg results etc..Information just fades away, and people start buying the products again...

    but me too, the more I learn, the less i know !...I go by science based cancer study results...and adapt those results if possible into my life if they are safe. Like low carb/low starch/organic/veg and fruit based diet, meditation not because it feels good but because it causes a proven chemical reaction in our cells. Less stress because of the link to activity in our cancer cells with a stress reaction in our body, medication after balancing the risks, finding my 'inner bliss' as Luan said to me...find what makes me happy...and thats the best I can do. Its up to my body then how long I live with this disease :) (or science if they can find us a cure :)

    no probs re the thread :)

    Heidi: im intrigued by your signature :) I see it changing...10 of 500 miles...are they days? or actual miles? 

  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2012

    That's my pedometer of sorts. It's always good to have a goal and I decided to make mine 500 miles along with another poster (badger) in the Fitness forum who had just done 2000 miles and was adding another 500. Since we started she's 50 miles ahead of me already. I need to do more cardio and that's why I'm doing this.

  • 3littlegirls
    3littlegirls Member Posts: 853
    edited February 2012

    I don't know if the hash oil makes me sleepy. I did find I wasn't sleeping through the night for the first week.  I would wake and I would feel stoned and had difficulty falling back to sleep.  I would feel sorry for myself and my family and the reality of my situation was like at the beginning of this journey.  :(  But I don't wake anymore except to pee if I drink too much water before bed.  I haven't felt high though so maybe my body has worked up a tollerance.  I tried it during the day and ya not doing that again. :P  

    If you look up Run from the Cure nad Pheonix Tears it gives some testemonials to it "curing" people.  I have a lady that goes to the same ND and she started taking it a month or so ahead of me and she hasn't changed anything else to her plan and she had 50% shrinkage in most tumours.  She was able to get me some and so I am giving it a go.   There are 4 or so from the clinic trying it.  My ND is aware and thinks it's worth a try.  He has to keep his hands out of it for legal reasons but he would presrice it if he could.

    I get scanned the end of March.  I am suppose to be taking it a bit more and more each day until I am up to a gram.  There is no way I can do that unless I had someone come and stay with my kids for a few months.  If I get some shrinkage I just might try it.  

    My ND emailed me he has some new treatment he wants to try with me to reduce my liver mets.  I will definately keep you posted on everything I learn.

  • thats-life-
    thats-life- Member Posts: 1,075
    edited February 2012

    3LG, i will look forward to the info. Interesting re the hash oil thing.

  • PipersMom
    PipersMom Member Posts: 13
    edited February 2012

    I am new to this thread and very inspired and motivated by the wisdom found here.  I am very aware of diet, etc. and try to find balance and the ability to do the right thing.  Can anyone recommend a specific alkaline water filtration system?  I am interested in adding this to my routine.  Thanks!  I am also very much interested in networking with others who have done Gerson.

    Stephanie, recent Stage IV, on Gemzar.  Need to edit my sign-off.

  • cheery
    cheery Member Posts: 311
    edited February 2012

    3littlegirls, thanks for sharing on hash oil. And please do share with us on further updates/ anything else of interest from your ND!

    That's-life, thanks for starting this thread:) I'm learning so much from it! 

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