An Alternative approach to Stage IV Health and choices

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  • EWB
    EWB Member Posts: 2,927
    edited August 2011

    Some days I wonder...what am I hoping for? is all this that I am doing worth it?

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  • Aza
    Aza Member Posts: 76
    edited August 2011

    I recommend to all this documentary at http://www.youtube.com/watch?v=H0ibsoqjPac

    It is rather lengthy, but even if you watch only the first 15 minutes, it may be worth your time. .. especially if you live near Houston.

    Love and hugs,

    Aza

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  • thats-life-
    thats-life- Member Posts: 1,075
    edited August 2011

    EWB: well, in my new 'hope' head space...im aiming to get this: more time before my body fails me, possibly be around for a new treatment... peace and acceptance of the outcome through simple meditation....my own spirituality (which is non religious, more about being made of the same stuff as everything in the universe)

    and, importantly, reflection on what i want from life, and aiming to get it. i lost myself somewhere, having a child, i have compromised too much...so this means, painting till all hours of the morning if i want to, writing the story i have always wanted to write...i suppose that i have realised that i can sit around waiting for the next 'suckerpunch', or i can try to be ME,  even with this disease...and in that way..'conquer cancer after all' as ian gawler put it.

    i admit, sometimes i  think...'stuff it, whats the use, i will just keep doing/going as i have been, and wait for progression, or for the sh*t to hit the fan with spinal damage'...but this is happening less and less, as i grasp that i can beat cancer by coming to terms with life/death/myself/hope, whether it progresses or not..and i remember whats it like to be the me that was, it makes me happy, even if i get to be that me for just a short time

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2011

    http://www.youtube.com/watch?v=DC9jkkEjlLI

    The above is an example of resistance training. You should ask your doctor if this workout would be ok for you. I hired a personal trainer who assessed me and started me out on similar easy workouts and had me progress from there. He introduced me to the TRX suspension trainer, the Swiss ball, assisted stretching, dumbbells, weight machines. etc. Once I got the hang of it, I could exercise at the gym on my own or at home. Yoga or Pilates would also work.

    Here's a video of the TRX, which I used after I had been gaining strength for a year. http://www.youtube.com/watch?v=h44VXQiK6u0

    This is one of the machines I use at the gym now. http://www.youtube.com/watch?NR=1&v=OhDhMPjPT2M

    Then there's the Kinesis machine, where you can do a lot of different workouts like the TRX.

    http://www.youtube.com/watch?v=zpJm3T-locQ&feature=related

    It's very important to first warm up not just before the session but to warm up specific muscles before too much weight is placed on them. Training for the 50+ crowd, with arthritis and all.

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  • rpailleret
    rpailleret Member Posts: 47
    edited August 2011

    I was diagnosed with breast cancer Oct. 2006 stage 2b..9 out of 14 lymph nodes tested positive. I had a bi lateral masectomy, reconstruction, chemo, radiation...Did everything onc. told me. No one (YES NO ONE) discussed diet and how to prevent cancer..I was told to take tamoxfin and sent on my way...I found out my cancer had spread to stage 4...mets to bones & liver in 2009. My Pet scan showed 5 leisons in liver, bone mets... I was told that I had 7 months to live...Well I decided that quality of life is what I wanted. No more Chemo!!! NO more radiation. I decided to go to the best Sloan Kettering, maybe I could go on a clinical trial..They immediatly started zometa and lupron shots...I found a wonderful nutritionist in my area, she suggested Vit. C infusions with a strict diet..no sugar, white flour..eating cancer fighting foods..I went from not being able to get out of bed to traveling to Nyc, visting friends...taking care of my 2 small children...My cancer began to shrink..Pet scans showed that the leisons were down to 3..I started feeling better each month..I have to be very honest, life started to get back to normal for me..I became less strict with my diet, and supplements (became to costly)...cancer started to rise again each month..slowly.. I went from a 37 to 623 a year later...I had to find a new Onc..could not travel to NyC anymore..felt very sick..2 months ago I became strict again with my diet, I started Oxygen chamber 3 x a week (1hour) my onc. had doubled my dose of hormal treatment, and I doubled my Vit. C infusion from 1 a week to 2x a week(with Bicarbonate infusion as well)...I am happy to report my July tumor markers dropped 400 points C27..my CEA tumor marker dropped 14 points..Can I honestly say it was the faslodex hormal treatment or my alternative treatments?

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2011

    Congratulations, rp! I'm willing to believe it was both. Did your onc prescribe the oxygen chamber? That sounds really interesting!

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  • apple
    apple Member Posts: 7,799
    edited August 2011

    thats-life..

    "i will just keep doing/going as i have been, and wait for progression, or for the sh*t to hit the fan with spinal damage'...but this is happening less and less, as i grasp that i can beat cancer by coming to terms with life/death/myself/hope, whether it progresses or not..and i remember whats it like to be the me that was, it makes me happy, even if i get to be that me for just a short time"

    how very perfect this is.........

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  • rpailleret
    rpailleret Member Posts: 47
    edited August 2011

    Oncologist does not believe in Vit. C infusions..oxygen chamber..it was my nutritionist who recommended it...

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  • thats-life-
    thats-life- Member Posts: 1,075
    edited August 2011

    apple: its taken a year from hell to get to this change in thinking..(i hope it didnt sound too perfectish).really hard for someone like me to turn my thinking around..the main thing i have got from all the bl**dy researching and reading i have done....is simply this: our situation is incurable with current treatment/a diet of supernutritious food wont kill me (lol)/no one gets out of this life alive/ i need to provide extra energy and nutrition for my 'normal' cells as the cancer cells take glucose and nutrients from them/ why not consider safe alternative options as part of a treatment plan/ and i had to be honest with myself...i have not looked after my body, i have had some major traumas in my life that i did not work through, and stopped enjoying life a long time ago, im a major stress head, and need to train my body to relax and be centered, which is good for dealing with this disease, but also good for possible healing :)

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  • thats-life-
    thats-life- Member Posts: 1,075
    edited August 2011

    rpailleret: i would love some examples of your cancer fighting foods, im going to put a list down here, but as you have a nutritionist, i would like to hear her recommendations too :)

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited August 2011

    I believe stress plays a big role with cancer.  I was diagnosed after going through a long stressful period with divorce.  I also tend to worry a lot and have found that you can not worry about things you have no control over.  I try to destress, sleep plenty and enjoy the things I appreciate in life

    Terri

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2011

    http://www.macmillan.org.uk/Documents/AboutUs/Commissioners/Physicalactivityevidencereview.pdf

    This was posted elsewhere on BCO and it mentions exercise as being beneficial for advanced breast cancer based on recent studies (p. 7). For those with bone metastases or osteoporosis, one would need to avoid high intensity exercise and contact sports. Exercise is even recommended in hospice care situations to improve quality of life.   

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  • macygrace
    macygrace Member Posts: 205
    edited August 2011

    Hmmm... one minute grapes are good the next minute they're not? Should we eat the grapes or not?

    Grapes of Wrath:

     http://foodforbreastcancer.com/studies/7145

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2011

    Looks like a go for grapes but no go for resveratrol alone? I just bought a bottle of grape juice and will finish it.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited August 2011

    I find so much conflicting nutritional information regarding what to eat/not to eat if you are dealing with any kind of cancer.  Read one book by an expert, it says one thing.  Read a second book by a second expert, it says another.  Plus all the supplements that are suggested to go along with the nutrition.  It's enough to make yer head spin.  I cannot really sort it all out.

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  • thats-life-
    thats-life- Member Posts: 1,075
    edited August 2011

    it is hard isnt it! wading through contradictory info. i read that the 'grape cure/fast' (using concord purple grapes) is not recommended for bone mets or fast growing cancers like pancreatic cancer, as the fast is too debilitating.  the thinking behind the 'grape cure' is that as the cancer cells are made vulnerable and 'exposed by the grapes', only the grapes' properties then penetrate the cancer cells..if you expose cancer cells and combine foods, you can 'feed' cancer cells...etc etc..that seems the 'logic' behind some of these 'one food only fasts/diets'.

    there are cancer killing properties in purple, green grapes etc. I think nature has the right chemical combinations!...meanwhile they study different elements, usually in concentrated doses, which is a good thing, but until they find a cure, we can only work with what nature gave us..the potential to have a robust immune system..this is why i have chosen a healing diet that has no extremes, and is purely based on giving us the best chance of healing/building our immune systems...i am including grapes in my diet...from everything ive read, i feel that its easier to seperate foods into 3 categories (im going to do lists on the fridge) 1. cancer killing/fighting foods...2. immune system building foods...3. just healthy nutritious food . if i see positive results from this healing diet, i will continue, and maybe tackle the cottage cheese/budwig protocol next, not sure...but one step at a time

    re supplements, i am wary of them. for example, there is a small island somewhere where none of the men get prostate cancer, so research was done and it was concluded that it was the red berries from the local palms that may have had the preventative qualities...so along comes a vitamin company and 'prostate fighting supplement' was introduced to the market...each tablet contained the equivilant of about 10,000 red berries a day!!??...(or maybe it was 1000) i dont think that the men who live on the island consumed that many berries a day/year!..it could have been the lack of stress from living on a pleasant,small island that was the keyto their health, who knows lol....so im sus on them...apart from vitamin C, and D..which are tried and true it seems.

    i dont think we will ever understand the complexity of nature. so i feel the key is to enjoy life, and not stress....do the farm gate thing, pick organic food, find the freshest organic produce, maybe a farmer's market, and walk around in the sunshine (better than rushing through the supermarket isles, where, here, some of the fruit and vege produce can have been in cold storage for up to 2 yrs)....enjoy preparing/eating super nutritious meals, juices....pleasure seems the key...stressing about what we are eating could defeat the purpose.

    I swear, that when i am angry, upset, or emotionally hurt, my mets sites ache!!,i have noticed this for a year.... but also when i am feeling really happy, they can have pain too...last night i read that it is proven that emotional responses have chemical reactions in our bodies, obviously....so pleasure, nutrition.... :)

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  • thats-life-
    thats-life- Member Posts: 1,075
    edited August 2011

    woops, sorry for the huge post, didnt realise... lol

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  • thats-life-
    thats-life- Member Posts: 1,075
    edited August 2011

    p.s i dont mean to sound flippant with these posts..the healing diet i am starting has turned around the lives of some stage IV people, according to them, in combination with meditation and other changes in their lives. I have got to the point where i have been reading reports by molecular biologists..ive realised i cant become a molecular biologist in a year!, i have stage IV cancer, im stable for now, so i can make changes. but this approach can help people even at end stage, those that i admire, and aspire to be like, when my time comes.

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  • rpailleret
    rpailleret Member Posts: 47
    edited August 2011

    There is so much I am doing to prolong my life....Everyone is different and your body has different needs and different times. I see a dr. in Marlton Nj who treats me with biofeedback (healing mediation)...I feel wonderful after my treatments. I also see a nutritionist who admin. Vit. C infusions who perscribes a diet by your bloodtype...each month they evalutate my bloodwork to see what nutriants I need...When I was really strict with my diet my cancer shrunk..I have met a few people who were stage 4 and are in remission..ned..without chemo or radiation. I met a women in Vit. C who was diagnosed with stage 2b breast cancer in 2006 (same year I had found out my diagnose) She went to jefferson hospital in PA had a biopsy..She prayed and prayed not knowing what to do. She decided on Vit. C infusions with bio carbonate infusions..changed her diet (blood type diet)..she did not cheat from her diet..She did a few sessions of oxygen chamber...she continued  to go to jefferson for a yearly pet scan..Her cancer is gone..The oncologist at Jefferson was shocked..He told her to continue whatever she was doing..She continues her Vit. C infusion 1 a month now, she is still very strict with her diet..No surgery, no chemo, no radiation. I know something is working for me..I know when I cheat on my diet my markers go up..When I am strict they go down...

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  • rpailleret
    rpailleret Member Posts: 47
    edited August 2011

    The Anti Cancer book is wonderful place to start...

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited August 2011

    i find the topic of diet SO interesting.  Before i was diagnosed, i ate meat and dairy and some sugar - not a ton, mind you,  but enough.  after i got diagnosed, i started reading and reading and ended up cutting out meat, dairy, sugar, alcohol (wasn't a huge drinker anyway), caffeine, (ok, that one hurt!).  i still eat wild fish and the occasional organic egg.  very occasional, though.  (i still did all of the conventional treatments, though.)  anyway, I ended up on the blood type diet for A+ blood types (which is me).  After chemo, surgery, and radiation, I saw a friend, who hadn't seen me in months, and she said, "I don't know what you are eating, but it is agreeing with you.  You look amazing - you are glowing!"  I was stunned, because after all that treatment, you would think I would have looked like crap.  But I didn't and I have to say, i really think it is the diet.  I think diet is a hugely powerful tool in our arsenal - I love it when I see women discussing it.  Rpailleret, I find your story really inspiring!  Go you!  

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2011

    I ate a ton of cottage cheese and yoghurt during chemo! Two of the few things I could eat.

    I have been meaning to see a nutritionist. Maybe now that I'm coming up on 4 years since mets diagnosis (3.5 years NED), the time is right. So far my strategy has been to concentrate on the big picture -- just cut the calories. I can give myself treats once in a while because I already know if I do so and so much exercise, a small dessert is doable.

    http://www.ncbi.nlm.nih.gov/pubmed/21109198

    Regarding stress, this can cause more free radicals to form. As with caloric restriction there is a connection to a protein called SIRT3, which acts as a tumor suppressor. SIRT3 expression in breast cancer samples is lower than in normal breast tissue.

    http://home.ccr.cancer.gov/inthejournals/xGius.asp

    Exercise and caloric restriction, maybe stress reduction, all increase SIRT3 so should be good for us! 

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  • macygrace
    macygrace Member Posts: 205
    edited August 2011

    I some what agree with TheDivineMrsM. I just go with my own research . So, I drink lot's of green tea, roobios tea, chopped garlic, immune boosting mushroom pills and eat healthy plus exercise.

    I've read quite a few topics regarding medicianl marijuana. Then I just found this topic under clinical trials:  

    http://www.newkerala.com/news/2011/worldnews-50777.html

    If I start feeling any worse I might just start partying it up.

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  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited August 2011

    I'm a little hesitant to post here as I'm early stage, but I love the open minds of those who are prepared to try different things and feel that stage IV presents an invaluable opportunity to test out different approaches with feedback from scans and blood markers to indicate possible results.  The difficulty in knowing whether any good results are from one or another approach or maybe an unknown factor means we can't draw any firm conclusions except from conventional medicine where studies show statistical results, also of course the limited numbers make any conclusions premature.  

    Since conventional medicine has no cure for MBC yet, I feel strongly that BC women need to help themselves within reason, that is, not taking undue risks but maybe trying different methods during remissions or while taking breaks from regular treatments.  Unfortunately for us early stagers, anything we try has no way of getting short term feedback so it's just guesswork and often vague studies about what works and what doesn't, to delay or prevent mets.  I'm well aware that some BC patients have led exemplary lifestyles with everything from organic foods, vegetarian and vegan, active lifestyles, no drinking or smoking etc, all to no avail.  There's no magic recipe for a cancer free life.  Yet I feel sure that there is an answer due to the people who have had spontaneous remissions and cures from all types of end stage cancers. It doesn't matter how rare it is, even one cure is proof it's possible and we need to find the key. That to me is the carrot that draws me to keep reading and asking questions. 

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2011

    I don't know about an "invaluable opportunity." I'd really much rather pass on it. I never wanted to know about tumor markers and only because people keep mentioning them here I decided to look mine up a few months ago. I hate scans! I have a panic attack each time I'm in there. Anyway I'm probably in the same boat as an early-stager, being NED. Who knows if whatever I'm doing is helping prevent recurrence/progression? I could be cured for all I know. Rpailleret and thats-life are in a better position in this regard.

    I don't like the term spontaneous remissions. Something has to trigger it. I'd rather say remissions of unknown cause. And there could be any number of causes. These could be acute or chronic, temporary or permanent. So I'm also digging deeper.

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  • thats-life-
    thats-life- Member Posts: 1,075
    edited August 2011

    scans are hard!..i try to relax but have mini panic attacks too....i had to have a break during my mri. but i think that now that i have been through one mri, next time might be easier...

    you know, i have been thinking about the term NED lately, i have become used to the term, having been on BCO for a year now...just yesterday i realised how amazing it really is! NO Evidence of Disease!....i would like to know more about how they confirm that with bone mets?, i have heard conflicting info...can it be confirmed? Heidi, did you have bone mets?....yes, remission, if only there was more info on it....i have read about infection being a potential initiator of remission, something that re triggers our immune response..and the latest results from the fellow who had such success with his 3 patients clear of stage IV blood cancer, same principle, but with the aids virus....(irony there..)

     i get what you mean joy...when you are told that modern medicine cannot cure your disease, it is in a way an opportunity to explore a new approach..

    heidi, today i was reading alot about exercise and bc..i think you are on a good thing there...for the record, my tumour markers are 2 !!..so of no help to me..

    re your digging deeper: where are you digging? lol im curious..

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  • thats-life-
    thats-life- Member Posts: 1,075
    edited August 2011

    rpailleret, im going to buy the book you mentioned this week :)

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  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited August 2011

    Heidi, yes, I know what you mean about passing on the opportunity thing.  Better to be cancer free than have an "opportunity".  That word sounds cruel! (Slapping my head at my insensitivity)  I hope you do remain NED.  

    I also realise I used the wrong term for "spontaneous" but the brain's not in gear lately and "unknown cause" is much more descriptive and it's why I won't give up looking for the cause or causes.  Please excuse me if I trip over words as I've had a word finding problem for many years that drives me crazy and it can take an hour to compose and edit one post. 

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  • rpailleret
    rpailleret Member Posts: 47
    edited August 2011

    To Thats Life....I wish the anti cancer book was out when I was first diagnosed...We are so blessed that we  have the Internet to do our own research..to read about others who are in remission from stage 4 cancer..I have personally met a few stage 4 cancers patients who are in remission for years....It is remarkable and has inspired me to do all that I can do to live a long and healthy life for my  children...The Anti Cancer book is so inspirational..it gives you hope...A friend ask me If I was making the right decision not to take the advice of my onc and start chemo again...I said no way it was the quality of life that I wanted...I was told 2 years ago i had 7 months to live without chemo...I know for myself I made the right decision. I have 2 nutritionist I see...they both agree no mushrooms, no corn, NO SUGAR, white flour, no process foods. With my blood type A- I was told to eat vegan...Once again I have to say when I am strict with my diet I feel wonderful!!!

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  • 3littlegirls
    3littlegirls Member Posts: 853
    edited August 2011

    I have been meaning to post but seems I only come on here late at night.  

    I was reading a bit of stuff on here. I am also taking Melatonin at night.  15mg. There is a list of benefits that this little guy provides.

    I read you are taking Vit D I have been told and take Vit D3 not sure why but this seems to be the latest and greatest way of getting Vit D I take 12000 IU

    I also take Curcumin (turmeric)  my ND Oncologist raves at this one and explained it supresses 5 different pathways for the cancer.  Green tea and Reservatrol only stop one pathway. I take those as well.  I also take wobenzymes they help to remove the inflammation and dead cells that are around the cancer hiding it.  Vit C oral 3000 mg a day plus I go 2x's a weel for IV's of 100 grams.  I take  Sustained Release R + Lipoic Acid which is suppose to increase the length of time the Vit C stays in your system. I take Grape seed extract and a bunch of other things. If your interested I can give you the whole list. 

    I will see if I can add the stuff I had in Mexico.  

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