An Alternative approach to Stage IV Health and choices
Comments
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The study you linked seems to suggest the same, that cells can travel from bone to other organs with the help of estrogen among other things. Tumors shed cells into the bloodstream. These disseminated tumor cells take up residence in the bone marrow even in early stagers. These are not tumors yet - not stage 4 - but have the potential to become tumors, including soft tissue tumors when they decide to breakout of their bony abodes. As for premenopausal risk, they and/or others seem to think that the cells need estrogen to help them breakout when zometa makes the environment tough for them. Without estrogen, cells have difficulty breaking out and maybe die.
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Well, until im at serious risk of fractures, spinal damage or hypercalcemia, im staying off it. Or until im post menopausal! Im disappointed that the most senior, experienced, researching, 'internationally renowned' professor at my clinic dismissed my thoughts by quoting studies that were done in mice where bone mets cells were implanted and went to bone, liver cells to liver etc, as proof that the Japanese guy's theory (and mine) was unlikely to hold up under scrutiny.
I believe zometa is a cost effective treatment choice as it delays fractures/hypercalcemia. and reduces hospital stays/costs within the prognostic time frame of stage IV BC. (recent studies indicate that zolendric acid only works in a subset of women) yet it is standard treatment.This is not a pleasant thought, but it is what i think. The side effects and deaths as a result of high dose zolendric acid (and even the lower dose oral form) have now made it mandatory to print on labels that it can cause renal failure and death. I feel that renal failure may bring on acites which may then become a haven for BC cells, add to that our standard treatment options...well..
These are just my thoughts about the downhill spiral so many of us at stage IV experience, and are not proven, and they go against present standard practice. But for the sake of the discussion, and for pre menopausal women, i think its relevant.
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we should definitely discuss zometa, our hormone status, estrogen levels, and recent study results with our oncologists.
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In defense of the professor, I don't think preclinical studies have bee done yet to prove your theory. But in suggesting an oral much less potent bisphosphonte than zometa he may be expressing some agreement with you.
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I do think it's paramount to increase bone formation in order to strengthen the immune system. I'm glad you'll soon be exercising more with a therapist. Walking will also help.
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I hope i can trust his decisions regarding my treatment.I would love to trust my oncs. i probably sound a bit bitter and mistrustful, but from the day i was diagnosed there has been such a kerfuffle, change of dx, tumour wasnt graded. change of treatment decisions (even in one visit i went from being told i was starting chemo on the monday, to being called into another oncs office to be told no, hormonal only will do). My bone mets 'cant' be confirmed by biopsy, or they wont biopsy them, yet at one point early on they told me they werent 100% sure they were mets. (they based their decisions on a spinal mri). I think living with that unknown/unproven has taken its toll on me...an ooph was booked, then he cancelled it, I was meant to start zoladex, now that's cancelled...He has given me a 3 month break till my next appointment... put it down to a "rant"...maybe i was just letting off steam and frustration with all the unknowns associated with this disease. You are right heidi, we have to wait until findings trickle down into standard practice i suppose.
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Ive always been a bit of a control freak in my life. I liked to be in control and plan everything. Metastatic Breast Cancer and a control freak? = not a good mix
This would have to be one of the most unpredictable of cancers re prognosis, and so complex and hard to treat.....drives me mad..so excuse my rant, i wasnt ever going to discuss what i thought of zometa, but that latest study result shocked me, and i couldnt help myself 
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Hey thats-life. Do you have the option to change Oncologists. I would also have no faith in him. He sounds very wishy washy. You need to feel he has a solid decisions based on solid research.
I said I would post all my alternative treatments and quantities. Keep in mind these were prescribed to me and like everything else it is somewhat tailored to my type of cancer. I am also including what each drug is used for. I am lucky that I found an ND that specializes in cancer.
High dose (50,000mg) Vit C IV 2xs a week- Cytotoxic to cancer cells.
Alpha Lipoic Acid (2 caps only on IV days) doubles the half life of Vit C IV
Melatonin (20mg at bedtime) increases immune response, improves sleep, decreases stress hormones.
Paleomeal DF (2 capsules mixed in protein shake with probiotic) Maintain lean muscle mass and to improve digestion/bowel health.
Vitamin D3 (10,000IU) Improves immune function, controls cell replication, decreases inflammation, improves bone metabolism.
Lugol's Iodine (10 drops) shown to prevent progression of breast cancers, improves thyroid function. * I take it in V8 juice so it makes the taste.
Resveratrol (200mg) Anti oxidant, cancer growth inhibition
Mistletoe (daily injections) Immunostimulant for me. For some people it will directly attack cancer cells.
Wobenzyme (5 tabs 3x's day) Contains quercetin shown to inhibit cancer cell growth, also decreases inflammation.
Curcumin (1500-3000mg daily based on your weight) Inhibits sarcoma cell growth, limits inflammation, balances immune response.
Grape Seed Extract (2 capsules per day) Inhibits cancer cell groth.
Quercetin (1500mg daily) Inhibits multi drug resistance pumps, increases apoptosis.
I3C (400 mg daily) Improves estrogen clearance by the liver.
Artemesia (500 mg daily 3 hrs away from food containing iron or iron supplements) Increases apoptosis. * I take this one at bedtime.
I had a chemo sensitivity test to find out what my cancer was sensitive to. It is a blood test that was sent and tested in Greece. You can get it doen in California as well. The one in Greece tests for Alternative treatments and chemos. California is only for chemos. It was expensive $2600 but I think a valuable tool.
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3littlegirls - thank you for posting all of that! Very interesting. I am also ER+/PR+ HER2-, with Stage IV mets. I see you have IDC... I had both IDC and ILC at initial diagnosis in '07, but my mets ('10) are ILC. I don't see how that particular factor would affect ND recommendations, though, so I'm looking at yours closely in comparison to mine.
There is some overlap in your protocal and the one my ND has prescribed for me, but also several differences. I will try to post mine when I get a free half hour.
Artemisia-- she recommended this for me, but I could not tolerate it. I had painful stomach cramps and diarrhea from it. Does it bother your system?
I3C - what is this? I'm on Femara, so maybe it doesn't matter for me, but I'm curious because I've never heard of it.
Iodine -- just curious, do you also have thyroid issues, or was this solely for cancer? I keep wondering about iodine, and I mean to ask my ND about it next time I see her.
Melatonin -- 20mg was recommended for me also, but golly it sounds like a lot and I almost never take that much. Do you have any problems with that high of a dose? I wonder about weight gain from it, too. But... I'm not sleeping well and I'm really struggling right now to keep depression and anxiety at a manageable level (major issues with a rebellious teenage daughter... on top of secretly battling Stage IV cancer for the past year... so yeah, my peace is a tad unravelled right now)... so maybe I need to do the full recommended dose of melatonin for a few weeks just to see how it goes before I decide to fill this anti-depressant script instead... (you can't do both because they both affect seratonin). Do you think it helps your mood, too?
More later --
~lulubee
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Wow, 3littlegirls, that's a lot of mistletoe. I am doing it 2-3x a week - it's really expensive. How did you get them to give you a daily prescription? And how long will you do it for?
that is really interesting about the blood test - where there alternative treatments that wouldn't be effective for you?
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@threelittlegirls: Thank you for posting that. I read about most of those supplements as being good for cancer management and prevention. I am scheduled to see my BC specialist in October and I think I would choose this route as part of my treatment plan. The one valuable piece of information that I got out of reading "Knockout" is that you want to see an integrative doctor who will work with your oncologist so you can have the best possible outcome.
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OK I will try to answer everything. Have a gymnastics date with my 2 year old in an hour, and still need to shower.
Lulubeee I just started taking Artemisia and so far I have not had any problems. I3C is Indol 3 Plus. (My ND wrote out the list for me and I copied it a little too word for word. Guess that must be the shorthand version.) Iodine is strictly for cancer treatment. As for Melatonin My ND has said before you can go way higher then that. I can't remember the amount but it sounded like a bottle of pills sitting under your tongue. I found the 5mg pills so only need to put 4 under. I have no side effects other then a good nights sleep and I do think it has lowered the feeling of stress. I am not on any anti depressants or anxiety pills. I stopped the anti anxiety pills cold turkey. I do not recommend that at all. Hard on the body.
The mistletoe is expensive. We did a huge fund raiser for me and I have it all in a separate account and I use it only for my Alternative treatments.
As for that Knockout book my ND is upset that she paints chemo so poorly. He believes you need to use it in some circumstances and there are people out there refusing it because of her book.
Would love to see what others are taking. I was doing green tea and reservatrol but my test came back that they had little effect on the cancer cells. So no good excuse for a glass of wine anymore
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I hear what you're saying...it didn't paint a very good picture of chemo, and frankly, from some of my friends who had taken it for pancreatic cancer and lung cancer (small cell) where it is known that it has no effect whatsoever, turned into living corpses, gained no additional quality of life as a result, and have now passed, it was a wake up call for me to do more research on my own.
What I learned is that there are several approaches to treating cancer, and chemo and radiation is just one of them. Diet and nutrition are very important as well, and if you don't go down that path, you have reduced your chances of being able to manage the disease.
Sounds like you are on the right path with your ND.
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hey everyone. Have just got back from an exhausting shopping trip with two 13 year olds. It was 8 hours in all.....phew!. the things we do for LOVE.
I just found myself somehow reading a thread about the apple fellow who has sadly just died. His alternative choices prior to surgery and his liver transplant are being discussed as possibly shortening his life. Although his decisions and protocols were apparently kept very private, there is speculation over what he may have chosen, with reference to his being a buddhist (?) and a vegetarian (?). I suppose no one will ever know. Shame that his choices are being tossed around as fodder after his death. Maybe the general public are shocked that someone so intelligent and successful was not able to beat cancer....(we know how hard it is!)...sad.
When i read posts that try to highlight the inadequacies of someone's alternative choice, it makes me sad. Sad because the same amount of scrutiny and call for proof of efficacy is not applied to the conventional treatments that we allow (sometimes experimentally) to be administered so readily. I believe we have some control over our body. we can only DO OUR BEST whatever we believe our best to be. Making intelligent decisions based on best outcome data is the best we can do isnt it?. I would love more open and frank discussions with my onc, compare outcomes of those who chose surgery at stage IV, and those who leave tumours/even breast tumours as i have been advised to do...it would save alot of questions that we ask each other here if they could give us the data we want, and not the sweet/pep talks i seem to get anyway.
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This thread is GREAT! I have to go through it again and start writing down things that all of you are trying. When I was first diagnosed with mets....I really changed some habits of mine and saw some dramatic response in my cancer fight. Since then I have sluffed off and although I am currently NED....I would like to keep it that way with my food and chemo. I am approaching almost 2 years of fighting this battle and only getting a 2 month break from chemo in those 2 years....I wish that I could get off chemo and battle my disesae with alternative meds....just not quite ready for that step yet. I am a triple neg, carry both the BRCA gene mutations and I am young (almost 37).....all of which are totally against me! Thank you for starting this thread awhile ago....glad that i just happened to stumble upon it one night when I was having problems sleeping! Just from what I have read there is some great information here.....here's to those of us LIVING with stage 4 and not dying from it!!!
Cathi
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Cathi, sometimes stumbling can save our lives. BTW diet changes are supposed to be really helpful for TNBC. That's about all I know, unfortunately.
I just stumbled on a research news item that's getting me on another trail for another lifestyle change. It's kind of sad actually, the part that talks about infant formulas, but towards the end of the article there's something relevant to us--AGE-restricted diets, which is less about the food and more about how you cook it.
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http://www.sciencedaily.com/releases/2011/10/111005170730.htm
An AGE-restricted diet emphasizes poached or stewed foods, such as mashed potatoes instead of fries, stewed chicken instead of grilled chicken, and boiled eggs instead of fried eggs.
The results showed that the subjects with diabetes assigned to the AGE-restricted diet had a 35 percent decrease in blood insulin levels, well beyond that achieved by their previous therapeutic regimen. This was associated with improved markers of inflammation and a restoration of compromised native defenses. This is the first study to show in humans that AGEs promote insulin resistance and possibly diabetes. The study also shows for the first time that restricting the amount of AGEs consumed with food may quickly restore the body's defenses and reduce insulin resistance.
"This clinical study begins to expose the double role food AGEs play in obesity and in diabetes, a major concern for everyone today, particularly young children. It is especially exciting that a simple intervention such as AGE-restriction or future drugs that block AGE absorption could have a positive effect on these epidemics," said Dr. Vlassara. "The tenets of the diet could not be simpler; turn down the heat, add water, and eat more at home."
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http://www.livestrong.com/article/412793-insulin-resistance-estrogen/
Here's the connection between insulin and estrogen. Those of us with low estrogen from antihormonals look to be more at risk. That's why metformin is good, or exercise, or sugar avoidance. Now also cooking in water, steam or eating foods raw.
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Wow, thanks Heidi, this is great information that I wouldn't have thought to read if you hadn't posted it.So AGEs are Advanced Glycation End products. And they are a result of over cooking and over processing foods. That's the first definite proof I recall seeing that processed foods in general have a measurable harmful effect. It seems groundbreaking news to me but will probably be unknown to most as it's too hard for the average person to understand, unless Dr Oz starts to educate people on his shows.I'm baffled why baked foods are more harmful than stewed, does stewing use a lower temperature? I prefer to cook with less water so the nutrients aren't leached out. I'm wondering if pressure cooked foods are cooked at too high heat also as the high pressure causes the food to cook much faster, so it looks like I'll be googling AGE's now.
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yes, i thought the same jlw, i was thinking that baked vegetables were the go...maybe its the oil we use when baking? Those articles heidi were very interesting .My friend was really interested too, she doesnt have cancer, but she is very anti sugar, and looking for a low GI diet...she is obsessed...:) and it seems something not too hard to implement
Hi bottkota...:) nice to hear you are living with NED
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Hi ladies...
I just want to extend a big THANK YOU to everyone that has contributed here and to Heidi and that's-life especially for all of your valuable input. Finding the balance between the conventional and the alternative treatments is very important to me and you've offered so much good advice!
thats-life... I don't like your oncologist's attitude! Have you considered seeking a second or third opinion on the breast tumor? Removing the primary tumor has helped me so much psychologically, as well as physically (I am currently NED). And you ahould be able to speak freely with him/her about all of your questions and concerns. Wishing you the best, and so glad that you decided to stick with us and this wonderful thread you started!
xoxo
Rose.
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Hi steelrose...thanks for the nice words
i remember you said you want a new drink recipe, this one was in my local newspaper, invented by a lovely somalian woman, who makes this for her children!. Edible weed Smoothie:
2 bananas (frozen)
2 oranges
2 handfuls greens (nettle, chickweed, spinach, kale etc)
1 stick celery
2 cups water (to taste)
Blend and enjoy!
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Very sweet of you to remember, that's-life! And I like the added greens, as I've been making fruit only smoothies. I'll try it!
Love to you...
Rose.
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On Tai Chi and Qigong...
'Tai Chi is an excellent weight-bearing exercise and therefore can help improve bone health, a problem for many patients who have received treatments that exact a toll on the bones. Most recently, Dr. Mustian and her colleagues reported that Tai Chi significantly reduced bone loss in breast cancer survivors, as reported in the June 2010 issue of Clinical Breast Cancer. In addition to these benefits, Dr. Mustian reports that Tai Chi seems to improve strength, flexibility and heart and lung function in women with metastatic breast cancer.'
"Most of us in the West first learned about the Qigong's cancer-fighting impact from the Second World Conference on Academic Exchange of Medical Qigong in 1993. Scientists at the conference reported on a study of 122 cancer patients in China and offered the following conclusion: The longer the Qigong was practiced, the greater the inhibition of tumor growth and reduction in pain. Qigong practitioners also had more stable immune system functioning, fewer side effects of chemotherapy, and a much higher percentage of tumor regressions than non-practitioners. In a separate study, the Qigong practitioners had a five-fold greater response to the chemotherapy compared to non-practitioners."
Qi Gong, as a health practice, has numerous benefits. These include:
- cardiovascular benefits such as a lower resting heart rate, improved blood pressure, and improved cholesterol levels
- respiratory benefits such as a slower rate of breathing, and improvements in asthma and bronchitis
- a stronger immune system
- improved circulation and microcirculation
- improved blood flow to the brain
- lower incidence of stroke
- a reduction in the frequency and intensity of seizures
- improved posture, balance, strength, endurance, and flexibility
- significant reduction in chronic pain
- decrease in stress levels and anxiety
- improvements in memory
- improved kidney function
- higher bone density
- destroys free radicals in the body
- improves digestion
- improves vision and hearing (lifeovercancer)
Here is a very nice link to a youtube video of qigong...im going to look for some classes in my town! http://www.youtube.com/watch?v=KJeyZ43i-xY&feature=player_embedded#!
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My DH's grandma was first diagnosed with BC in her sixties. Over the years, the BC recurred a couple of times, one time even spreading to her jaw. She had surgery for that. Despite this, she lived a fairly healthy, active life, which included daily qigong and walks. When she finally passed away, she was 90 years old and it was not because of BC. She always said that the qigong really helped her stay healthy.
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Qigong has a ton of good science behind it. I'm going to look for it in CT.
Per that's life's request, here is my post on soy from another thread...
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Another thing, phytoestrogens and estrogens do not function the same way. They don't occupy the same receptors on the cancer cells and they don't activate the same pathways. Phytoestrogens go to the ER-b site on the cancer cell; compound that go to the Er-b site are anti-estrogenic, regulate immunity, and kill cancer in the cell. Estrogens go to the Er-a receptor site and are carcinogenic, estrogenic, and involved with increased cancer risk. From the study that I read this morning, it appears that fermented soy products increase the number of Er-b sites on the cancer cells, while decreasing the number of Er-a sites. In addition, fermented soy has been found to reduce HER2 expression - it can also cross the blood-brain barrier, which Herceptin can not. It also can increase the BRCA1 and BRCA2 gene expression - women with low levels of those genes have increased risk of cancer. Increasing the gene expression of both of the those genes means that the genes will produce more proteins that can repair DNA damage in breast cells. Finally, fermented soy has an antiangiogenic effect, restricting the blood supply to tumors and inhibiting their growth.
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thanks sweetbean, i thought it was a really clear explanation of this sometimes confusing issue. i have been craving tofu, but have been resisting it...do i look for fermented tofu or is it all fermented, being tofu? (lol)
chillipaddi, that is a nice story..im really interested in qi gong.
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lol...that's a good question. Tofu & tempeh are totally fine. I think the soy that is not beneficial is the "soy protein isolate" found in protein bars. You are better off making a whey protein shake with soy milk. (Whey protein actually fights cancer, as opposed to the other milk protein, casein, which promotes it.) I alternate between a vegan protein mix and a whey protein mix. However, I'm off-topic -back to soy! I think it is important to get organic, non-GMO soy as well, but I am sure you are already doing that.
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was googling tofu, found this explanation...maybe look for fermented tofu, or go for tempeh..(Marksdailyapple) "In general, I recommend fermented soy products such as black beans because other, processed soy products like soy milk and tofu contain phytic acid, which does inhibit some nutrient absorption (hence the soy controversy).
6. Tofu
By now, tofu - in all its slippery and firm incarnations - has made its way into the mainstream of the American diet. Sort of. The texture is something we may never fantasize about, but it is a nice occasional alternative protein source, especially for vegetarians and people who want to avoid too much meat (given the way meat is produced these days). I say occasional because, remember, it is a highly-processed food. Many types of tofu - especially "mock meats" - are really akin to processed deli meats and sausages. Of course, tofu comes from a bean and doesn't contain antibiotics, added hormones and animal products, but it's still - all together now - a processed food. In fact, I really don't think tofu is much different from a slice of low-fat cheddar. Puts things in perspective, doesn't it?
7. Tempeh
Here's where soy gets healthy (finally!). Fermented soy products are rich in isoflavones, which are excellent for the heart and may even prevent cancer. The good news is that you can find fermented soy milk and tofu if you look for it (and grocery stores will often start carrying it if you just ask). Tempeh is a chewy, nutty, meaty type of soy product that is loaded with isoflavones, so I do recommend this. I think it's a lot tastier than tofu, too"
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Just got back from a sailing trip and been having lots of fish and vegetables, yum! And vitamin d. A bit too much wind for my taste, but it was great to be outdoors all day.
I also have a qigong story: a friend's mom has had her bc recur twice and has beat it back both times. She is an avid qigong fan and gave me a dvd when she heard of my diagnosis. But it's hard to fit in with all the exercise I do already.
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heidi...that sounds so nice...sailing, sun
I have found a yoga center in my town that has qi gong classes on a saturday morning!
Physio is coming to see me tomorrow morning re safe exercise, looking forward to that.
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