An Alternative approach to Stage IV Health and choices

thats-life-

I would like to invite discussion on the challenges of living with stage IV metastatic disease.

Those who can contribute valuable information on alternative therapy options for health/ wellbeing and survival at stage IV, are welcomed to help me, and i hope others, wade through the issues surrounding this sensitive and personal journey.

I hope to hear from the informed members who have experience in natural therapies. I hope also to share a tranquil place with those who want or need a non standard approach to our chronic/ incurable condition.

I welcome members at any stage of their disease, who are also looking at an alternative approach to treating their breast cancer. I invite, and would appreciate, involvement by those who believe an alternative treatment/ diet or lifestyle choice contributed to their long term stage IV survival.

thats-life-

I would like to start with this, i think the questions are simple but straight forward: 

"'the logical way to assess any proposed form of treatment would be to ask the following questions: 

(a) What does the future hold for you if no treatment is given? and in such circumstances, what range of life expectancy would you have? if there were 100 patients just like me..how many people would be alive in one year? and what would their health be like? how many people would be alive after 5 years, and what would their health be like?

(b)What range of life expectancy would you have if given the proposed form of treatment? if there were 100 patients just like me...After one year, how many people would be alive, and what would their health be like? After 5 years, how many people would be alive, and what would their health be like?

(c) What are the side effects of the treatment? If 100 people like me were given this treatment, how many people are likely to be affected by those side effects? e.g. do 5% or 95% have nausea?

(d) What impact will my own response to the treatment have on the outcome?"

Ian Gawler.

luv_gardening

Thats-life, what a pertinent opening post for our new alternative forum!  Such important questions from the great Ian Gawler too.

MBC Statistics 

I suspect the answers will be tied in with statistics for all forms of BC.  I hope I'm wrong but there don't seem to be statistics for people with metastatic disease so how can the doctors answer with any certainty?  As I haven't needed to research this I could be wrong.  Yes, they have statistics for individual treatments but most MBC patients will get multiple treatments. I know that in BC statistics they always quote 200,000 diagnosed and 40,000 deaths in the USA and the ratio is roughly 1 death per 5 diagnosed in all developed countries.  But I've never yet seen a quote for the number of mets diagnosed in a year.  I suspect the stark truth, 40,000 deaths to 40,000 diagnosed would be too confronting for the health services and the research establishment.  I'd love to be corrected on this.  Please!

Compulsory Register 

So the stark bottom line highlights the intense need for some alternatives to current treatments.  It's fair to say that current alternatives may well have similar results but we don't have statistics on these as they are too scattered and there is no system for reporting.  I think we need some form of compulsory register for all people with metastatic disease, the same as we do for certain infectious diseases.  The register could record all diets, supplements and modalities used and for how long, and it could chart changes in the disease so that any "spontaneous remissions" could be studied for similar treatments to see which ones if any are worth researching further.  Just think how helpful the register would be for legitimising those pesky testimonials if they could be used for that purpose.

As things stand, there are few studies into spontaneous remissions, and doctors tend to attribute them to conventional treatments even when the patient had long ago completed them.   I realise it is difficult to monitor someone's treatments when they may take one supplement for a month then change their mind or add a lot more next month.  I feel we must try something like this if we are to take cancer seriously.  After all, Catholics quite rightly go to huge lengths to prove people have been cured so they can declare new saints, aren't our lives more important than declaring a new saint so we could spare similar resources in the hope of saving money on ineffective treatments?

sweetbean

I'm not Stage IV, however, I am taking AveUltra (Avemar.)  It is a fermented wheat germ extract that both acts as a PARP inhibitor and enhances the efficacy of Tamoxifen.  There have been lots of studies done on its effectiveness on many types of cancer.  It's expensive, but worth looking into.

radiant

Thanks for starting this thread. Amazing to have a place where Stage IV people won't get brutalized and attacked for exploring options. I've been on chemo for 5 years. It's ALOT and I keep looking for things I can do to help myself - things that I can explore, etc.

This was just posted on my facebook and it looks GREAT. It's a movie, created by naturopathic doctors touring top alt tx's for cancer all around the world. Wow - what a GREAT idea. I haven't looked at it yet, but I will. For $20, seems like a great deal.  Here it is:

http://www.naturalnews.com/033219_cancer_cures_treatments.html

It shows the combined knowledge of thirty holistic healing experts - and supposedly explains by these experts why these alt tx's work.

Interesting!

Enjoy -

Kim

 

Katarina

JoyLiesWithin --- you are so right, even the dedicated cancer orgs. don't keep statistics and don't really seem to care to. We do for other diseases so why don't we for Cancer?

 I think as long as the mystique of cancer is left on the table instead of the hard facts, they'll continue to foster donations and a huge industry that profits.  It's like homeland security and TSA, if you only have fear and threat of cancer terrorism to contend with it's easier keep attention on big picture and keep things in motion but not really solution it.

thats-life-

thanks radiant, i will look for the movie, and i hope we can learn some things here to help us approach our disease from all angles...sweetbean, i will research Avemar, i appreciate your post...joy, you are a joy to listen to as always,....and hi katarina...

I will be posting some information tomorrow that i feel could be of benefit, on treatments and studies. I will try to not bombard the pages with cuts and pastes, but there is so much information i would like to share, discuss and learn from.

petjunkie

Hope it's okay for me to post here because I am currently on chemotherapy (Xeloda). I'm interested in alternatives to chemo because I know that one day they will stop working for me, or be too toxic to continue. Right now I have managble side effects and the drugs are working, so I am hesitant to stop them. . . but I want to do research and learn more from those who are more educated about alternative medicine than I am.

My first major question is for any Stage IV gals out there who turned down chemo:  are you doing hormonal therapy such as Femara? Hormonals failed for me. I would be more comfortable stopping chemo if i knew that Femara or Armidex or something like that was an option for me, but it's not. So I'm particularly interested in hearing from ER-/PR- gals or those who are not doing the anti-hormonals AND not doing chemo. What are some of your alternative options?

thats-life-

hi petjunkie, im glad you did post here, im sure there are alot of us who think about this there is a new post on the stageIII thread you may be interested in reading, a woman who is her2+, and has chosen an alt approach.

I suppose we should tread carefully on this thread. To choose against/to stop standard treatment is a huge decision,and one to be made carefully with an understanding of the potential outcomes. As Joy said, studies comparing Alt/conv. are rare, but there are articles/studies which i will post on metastatic disease and chemotherapy, and articles/studies on alt therapies, some of which are exciting. My personal decision to decline chemo is still in the making. The oncs are aware of it, and are trying to work around it with me. I have delayed starting zometa too. so i am only on tamoxifen, a risk i decided was worth it as i am 100% ER+. The oncs said 'as long as you are aware of the possible outcomes" she also said "you would make a good case study" ..(Joy's idea of documenting our journeys is a great one) I have my personal thoughts about cancer, and i hope this can be a place for discussion of studies/feelings/quality/quantity of life issues, and hopefully an exploration of outcomes for various treatment options.

My interest is in the effects on our health/bodies and lives from chemo verses the effects on our health/bodies and lives living with an holistic approach to our life..meditation for our mind and body and healing, a diet that fights cancer and boosts the immune system, peace, acceptance of the possible outcomes..., we may have one of those rare, exciting spontaneous remissions, or we may not, but how we choose to live the years that we have now, i believe is worth exploring openly

mackers67

Hi



Sorry I haven't read all posts hv been away from boards so catching up... I thought abt no Chemo and taking the diet etc approach, but the onc pointed out once the cancer cells were live in the body/system, they hide themselves or the best way of putting it "presented" themselves as normal cells therefore our immune system does not naturally attack the cancer cells which is why they spread and immune system appears to do nothing... Herceptin is one drug that encourages the immune system to kill cancer cells but it is a biological drug and only of use obviously to people who are her2. On this basis I choose chemotherapy and it got rid of 90% if my cancer and most of my left breast was diseased.




Would like to say it was not an easy road to tread and I respect others who decline it, for me I made the right choice...



Lots of love and good wishes..

Txxx

thats-life-

hi mackers, i agree, that has been my concern...how do we 'turn off' the enzymes that help protect cancer cells from our immune response..from what i have been reading over this last year, it seems we need to approach from a number of angles.

The first is that our immune system is compromised by chemotherapy.

there is also the issue of cancer cells using nutrients from our 'healthy' cells...if we consume a high nutrition diet, it can help 'feed' the cancer cells as well as our 'healthy cells', and so help to buy us time...and avoid muscle wastage, weight loss, and help us to live longer with this disease.

Chemotherapy does not cure our cancer, but yes, can hold it at bay for long periods of time, and that is good!...i am looking for a sound diet that could also keep our bodies strong. and i am willing to attempt the 'healing meditation' ( 1 hour of relaxation 3 x a day) that Ian Gawler claims helped turn around his horrible prognosis...whether it helps to turn the cycle of disease around, or, whether it helps with pain management and a calm approach to our disease, either way, it is beneficial i think.

building the immune system again should be an enjoyable process, i am in the process of researching how...

Then there are survival stats, i specifically want to openly look at how many people die from chemo/treatment related problems, liver damage, toxicity etc...

Yes, herceptin seems to be giving people some great benefits,

thats-life-

Using a touch screen so cant cut and paste, so have copied the following ..it includes some paragraphs from a review on oxidative stress. I am open to discussion of this review:

Review

Hypoxia and oxidative stress in breast cancer

Oxidative stress: its effects on the growth, metastatic  potential and response to therapy of breast cancer

Nicholas S Brown and Roy Bicknell Molecular Angiogenesis Laboratory, imperial Cancer Research Fund, Weaterall Institut of Molecular Medicine, John Radcliffe Hospital, University of Oxford, Oxford, UK

...An antipoptotic response to chronic oxidative stress may have severe implications for anticancer therapy. As outlined above, radiotherapy, photodynamic therapy and many chemotherapies generate oxygen radicals. Their antitumour activity is to a degree dependent on the induction of tumour cell apoptosis in response to oxidative stress and oxygen radical induced DNA damage. Persistent oxidative stress within carcinoma cells may therefore cause resistance to therapy. Oxygen radicals might also increase drug resistance by increasing carcinoma cell expression of P-glycoprotein, the multidrug-resistance efflux pump.

....oxidative stress may aid the seeding of metastatic tumour cells

....Oxidative stress within breast tumours may also facilitate invasion and metastasis by activating MMPs and inhibiting antiproteases.

...In conclusion: Carcinoma cells synthesize ROS at an elevated rate in vitro, and many tumours in vivo appear to be under persistent oxidative stress. The present review outlines potential causes of carcinoma cell oxidative stress...and summarizes mechanisms by which oxygen radicals may affect the outcome of breast cancer. Future experiments will reveal the extent to which oxidative stress influences the prognosis of breast carcinoma. If oxygen radicals do lead to a poorer prognosis, then antioxidants may be of therapeutic value. This is an exciting possibility, because antioxidants are drugs of low toxicity. Evidence from other tumour types suggests that antioxidants may indeed be of use against breast cancer...

This review can be read in full by typing the heading into google.

thats-life-

'Curing cancer can be perceived as doing one or more of three things:

1) killing the microbes inside the cancer cells, which allows the cancer cells to revert into normal, non cancerous cells

2) killing cancer cells

3) building the immune system

...extract from an alternative therapy website

CACHEXIA: or 'wasting syndrome', is loss of weight, muscle atrophy, fatigue, weakness, loss of appetite. It is a positive risk factor for death - meaning if the patient has cachexia, the chance of death from the underlying condition (cancer eg) is increased dramatically....

(def wikipedia)

luv_gardening

Thatslife, with mets there's also the problem of cancer stem cells which can possibly hybernate in the bone marrow where drugs and other remedies can't get to them. They aren't actively dividing so chemotherapy can't touch them. I can look for research to illustrate this if anyone is interested but don't have time right now.

It's still a relatively new area of study but I know that any treatment will eventually fail when these CSC's activate or invade a new area.  They remind me of the herpes virus which hibernates in the nerves where they escapes anti-virals, so outbreaks can be managed but they will always return. 

thats-life-

'University of Michigan

Comprehensive Cancer Center

Stem Cells in Breast Cancer

" Breast cancer stem cells were discovered in 2003 by scientists at the U-M Comprehensive Cancer Center. We believe that conventional therapies for Advanced Breast Cancer are limited because they target the wrong cells. These therapies were designed to shrink cancers by killing all the cells in a tumour. We believe therapies could be more effective, and cause fewer side effects, if they were aimed at a small group of cells within the tumour called cancer stem cells.

Breast cancer stem cells, the first to be identified in a solid tumour, were discovered in 2003 by scientists at the U-M CCC. U-M scientists found that just a few cancer stem cells are responsible for the growth and spread of BC. Unless the cancer stem cells are destroyed, the tumour is likely to come back and spread malignant cells to other parts of the body, a process called metastisis. Because stem cells are resistant to traditional chemotherapy and radiation, we need new treatments that can be targeted directly to these deadly cells. U-MCC scientists are studying breast cancer stem cells to learn more about them, and to determine the type of therapy most likely to destroy the cells."

Joy, if you have time to research stem cells that would be great...I do have some info, but will wait for yours. I wonder if bc stem cells can be 'deactivated' ...i wonder if immune system building/boosting could assist, as it does for the herpes virus/shingles issue etc, that you used as a comparison.?

Chemotherapy has its benefit in symptom control for stage IV BC, but i am concerned at its effect on our immune system, especially as maintenance chemo is our main standard option once hormonals have been exhausted, or dont apply.

macygrace

Have you guys seen this topic over in Clinical Trials....?

   http://community.breastcancer.org/forum/73/topic/772950?page=1#idx_8

3littlegirls

I am excited to find you guys.  It is late so I won't write a lot right now but while I was in Mexico I had a dendritic vaccine. It is where they take your own white cells harvest them, multiply them and then they feed them the cancer info. They then give them back to you and hope they play a good game of pac man.  Because they are your own white cells they are suppose to be able to go everywhere including your bone marrow.  I will look up the info and post it here tomorrow.  

As well if you take wobenzymes it helps to remove all the dead enzymes and inflammation surrounding the cancer cell that helps make it hard to detect.  I  have been reading and trying to go about things from every angle.  

Thats life I admire your bravery in going about this your way. After all my reading I am not sure chemo was such a great idea.  I did get shrinkage but I also got major vein damage in my left arm, as well as chemo fog which I still suffer from a year later.  So I think good for you for thinking outside the box and doing what you feel instead of what you were told.  I am also 100% estrogen receptive.  

I have been building my immune system up and awhile ago I got the tingling sensation of a cold sore coming on, and nothing ever materialized.  Hopefully that says something about what our bodies are capable of. Same with colds, I get that feeling when your body is off when you are coming down with a cold and nothing ever materializes. My family had a ton of colds this last winter and I was fine.  

ibcmets

Thanks for opening up this topic.   I try to find complimentery treatments to help along with the chemo, surgery & hormonals I take to help keep my cancer at bay.  I'm the first one in my family to have breast cancer & was diagnosed stage IV ibc with bone mets from the start in 6/09.  I knew from the start switching to a better diet was not going to cure my cancer as I've found some women who are vegetarians & have followed a healthy diet for most of their life that have cancer.   I do believe eating healthier and getting the vitamins I need will help keep me stable much longer than doing nothing.

I do drink alkaline water and eat more fruits & vegetables, especially antioxidants.  I've read some research that alkaline water brings more oxygen to your body & helps fight cancer cells.  In fact, I had a pre-surgery appt this week and the nurse I had told me to follow a alkaline diet & drink alkaline water.  I was surprised because I did not think anyone in conventional medicine would recommend this.  You can google aklaline filters or foods and find more info.  I did some research on the water filters & found Kagan filters that are pretty expensive and I bought the cheapest one I found from Tyent alkaline filters.  They were 1/2 the cost.

I also take D3 which is supposed to fight cancer and took B6 & B12 during chemo to prevent neuropathy.  I take Melatonin at night to help me sleep because it's natural and also fights cancer.  As you get older, you produce less Melatonin.  

I do believe we have many more people getting cancer due to the environment, the way food is produced, the preservatives & antibiotics that are put in milk & meat to prevent ecoli, the minute chemicals put in water that we take in daily, etc.  As Americans, we eat a lot more fast food and most of it is made with corn syrup and  preservatives.  I shop a lot at a new organic store that openend in the bay area of CA called "Sprouts". Much of the food there is organic and they carry organic milk without the hormones added as well as organic fruits & vegetables.  They also offer juices & lemonade made without corn syrup added.

I've done what I needed to do medically such as chemo, mastectomy & hormonals.  2 years later, my scans are clean and my bone mets are stable and not active.  I don't know how long I can keep things stable, but I'm hoping my efforts will help stabilize me.

Terri

tylersnana2010

Terri,

Please do tell me more about D3, B6 and B12.

Are they vitamins????

This is my first time on this site and I am still in a world of dismay with my condition. I will look further into the Alkaline water and food diets you have mentioned.

 Thanks for your help.

thats-life-

hi tylersnana, and welcome.. though its tough dealing with this diagnosis, in time it gets easier..im a year into it, and am finally getting my head around it. we have a stage IV forum with lots of info on treatment and dealing with any issue you want help with, as well as this alternative section, and the complementary forum. Ask anything you like, there are many informed people dealing with this diagnosis on bco....are you having treatment at the moment?..i just saw your bio, i have skull mets too, we can still live a long time with bone mets, hang in there

thats-life-

looking forward to hearing more of your story 3littlegirl...:)

ibc mets, great that you are stable..i think rebuilding our immune system is a really important step

ibcmets

Tylersnana,

D3, B6 & B12 are all vitamins.  You can find them over the counter at any pharmacy.  The B vitamins helped me with fatigue & neuropathy a lot.  D3 has been noted for fighting cancer and many women have been found to be deficient in this one unless you get a lot of sun.  I take 2000 IU a day of D3.  You can even get B6 & B12 at places like Trader Joes or Whole Foods but check the price on them at your own nearby pharmacy.

You can google any of these to find out more info on them.

Terri

Heidihill

After I finished treatment I went to see a naturopath at a conventional breast cancer center. She gave me 3 pages of recommendations. I'll try to write it down here in installments if I find it.

First of all I did have all the conventional treatments, chemo, mastectomy, Zometa, rads and Femara (the only thing I'm on now for bc). From my own research and experience I would consider daily exercise the most important lifestyle change I made since starting treatment. I did reach NED after 5 months of chemo and walking everyday, so I could ramp up my exercise regime over the years (almost 4 years since diagnosis!) and have actually built muscle mass and improved my muscle strength and function. Taking calcium and Vitamin D to strengthen bones, as well as eating lots of fruits, vegetables and leafy greens were also important steps. The two former supplements were on my naturopath's list. Another recommendation she had was for me to take ca. 50g of protein daily (in accordance with my weight). This definitely helped with muscle recovery after bone mets- and chemo-induced cachexia, together with resistance exercise training. Chemo, surgery and rads were tough but I would say my immune system and body in general have recovered from the assault and given that I am still NED, was very much worth it for me. I do think that the alternative approaches along with Femara have helped me stay NED the past two years. Muscle health = bone health = reduced risk of recurrence or progression in a low-estrogen environment. My onc actually recommended I take melatonin at some point (when I took a month long femara break). Melatonin is anti-estrogenic according to some sources.

Heidihill

Thats-life, my onc once mentioned to me that if I wasn't postmenopausal after chemo he would prescribe something to suppress my ovaries along with Femara. If I were in your shoes, refusing chemo, I would do this instead of Tamoxifen. I've just read some research that aromatase inhibitors are more effective (in mice) than estrogen receptor blockers. Also Tamoxifen is only a partial agonist, that is, it does not work against estrogen receptors everywhere in the body. As far as I understand it, it does not reduce estrogen receptors in the bones (somebody correct me, if I'm wrong). For this reason one would not need to take a bone strengthener with Tamoxifen, which one normally would with Femara. I know this would mean three drugs instead of one. Maybe this is unacceptable to you. How about adding melatonin to Tamoxifen then?

thats-life-

hi heidihill, your story is inspiring, thanks for the insight into our ability to overcome cachexia. i look forward to your naturopath's recommendations, thanks for sharing that with us

Yes, i have spoken with the oncs re the chance that i will say no to maintenance chemo, and they have suggested what you suggested...though they prefer an ooph asap, and then onto an AI..i have heard that they work well too, tamox has kept me stable for nearly a year, but they want to stay one step ahead, so do i..if possible..

I am going to give the alt approach a go too...starting sept 1st (had to set a date or i would have spent another year researching lol...) i agree, as you said, exercise does extend our lives at stage IV, the head onc told me it was proven (!), so that, 45 mins sun a day, vit D, organic super nutrient natural food diet ( i will share some ideas soon here) I seem to read that supplements arent necessarily that good for us, but the protein idea in the situation you were in sounds a good idea. and healing meditation, to destress ! and good for pain management...i suppose im hoping to stay strong enough/long enough to be able to benefit from these immunology treatments that are currently being researched so hi ho hi ho..its off to build the immune system i go

RE tamox and bones: that is interesting re receptors in our bones...not sure, im going to ask the oncs that next time.

Heidihill

Good for you on getting so much sun! I have to scrounge around for it a lot. I also eat organic as much as possible. And yes, my onc said natural sources are better than supplements. So I do eat cheeses and dairy products for calcium. I didn't tolerate the vitamin d and calcium supplements that well. The vitamin d infusions made me feel sick.

I'm not counting on the vaccine treatments. I don't believe that they're totally harmless, particularly for people who have autoimmune issues. I have such a history, so I'll need to be more cautious.

thats-life-

heidihill, i wanted to ask you what you mean by resistance exercise training, what are some examples, and with bone mets, how did you begin?

ive just started vit D, but in capsule form, didnt know we could have an infusion...

i feel they are heading in the right direction with immune therapy for cancer, and that we probably are as well. i have been reading as much info as i can on spontaneous remissions...some 'studies' claimed that healing the mouth of any dental issues/low grade infections/cavities cleared up early stage bc...some claims were that a complete overhall of our diet, emotional and physical health turned things around, sometimes surgery was considered the turning point, these are things we can control, and do, and cant do any harm (surgery not included lol)

Has anyone read about purple grapes?...their properties (skin and seeds) and that they are capable of opening the lining of a cancer cell, and destroying the microbe inside it?..it is very interesting reading, if you google 'purple grapes. cancer'...i am probably not game enought to do the so called 'grape diet'. but i am going to find where i can buy organic purple grapes, and start eating them like i used to eat lollies

apple

get ready for the trots... as they say.  I love deep purple grapes and planted some Concords.. maybe next year I'll have grapes growing.

thats-life-

concords are the ones i have been reading all this amazing info on!...

thats-life-

i have struggled with the idea of HOPE. for a year i had none. because i believed that hope led to potential disapointment. and i thought it was better to not feel disapointment. but i have changed my perception of HOPE.

i read this early into my diagnosis..it may have been someone's sig line here, not sure, but i wrote it down in my 'when in a panic' notebook:

'if you knew that hope and despair were paths to the same destination, which would you choose?' Robert Brault

I feel now that putting in effort to prolong life, as well as creating an environment for potential healing, emotional, spiritual and physical, along with acceptance of the outcome of any life, which is death...can only make the journey more rewarding...its taken me a while to get to this way of thinking. but i am enjoying it.

p.s. (in a recent study in melbourne, an onc at a large cancer center did a study on HOPE. she made the point that hope was different from positive thinking. she feels she had evidence that hope extends the lives of people with stage IV cancer. she presented this at a cancer conference, but has not published her findings yet)

so bring on hope !

thats-life-

the 'grape cure/fast' is NOT recommended for people with bone mets/bone cancer