An Alternative approach to Stage IV Health and choices

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

    Hi there!

     Avemar is a fermented wheat germ product that works in a couple of ways.  First, it works synergystically with Tamoxifen to make the Tamoxifen more effective.  Second, it is a natural PARP inhibitor.  PARP is a type of protein that is necessary for damaged cells (ie. cancer cells) to multiply.  Inhibit the production of the PARP protein and the cells go into apoptosis.  PARP inhibitors are all the rage in clinical trials right now..

      It's not cheap, though - the cheapest price I found on-line was $140/month.  However, there have been a lot of clinical trials with Avemar and a number of different cancers and the research is really encouraging.  I definitely think it is worth while and would recommend it to anyone.   

    It is a bit of pain to schedule, as you have to take it 2 hours before and after any supplements/medication and 1 hour before or after a meal.  So I generally eat breakfast around 7am, take all my meds, and then do the Avemar around 9:30-10am.  If I wait later, then I have to wait to eat lunch and I don't like that.

    Yes, I do the protein mix because of the vegan diet.  Just want to make sure I am getting enough. My smoothie includes protein mix, broccoli sprouts, Amazing Grass ORAC blend, bee pollen, blueberries, and soy milk.  It's not bad.  It's not French toast, though!  lol

    I generally eat 2, maybe 3 pieces of fruit per day, plus a zillion vegetables and one big green drink - today's had kale, chard, broccoli, cucumber, tomato, celery, and apple.  I'm actually starting to look forward to it!   When I was diagnosed, I cleaned up my diet and lost 11-12 pounds. I was surprised, because I hadn't thought my eating habits were causing me to gain weight, but there I was.  So even though I thought I was a health nut, I obviously had some areas for improvement.  Interesting, you know?  

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

    bee pollen??!!...why did you choose that?..you are blitzing it on the low carb/high vegetable intake thing sweetbean..sounds great :)

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

    LOL....thanks, that's life!  bee pollen is one of nature's greatest sources of amino acids and vitamins.  bees go from flower to flower, choosing only the best ones to gather pollen from.   so you get this highly concentrated, very nutrient dense substance in the form of tiny yellow pollen balls.  I take about a teaspoon a day.  :) 

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

    if anyone wants to join my little (and i mean little..lol) facebook group page, and help turn it into something positive, whether diet and food options, or awareness of MBC...here is the link..(or i could just ditch it, and focus on other ways to get the message out there, not sure) ...

    http://www.facebook.com/#!/groups/207476615984221/

  • ango74
    ango74 Member Posts: 255
    edited September 2011

    Thats-life, I sent a request to join.  I think that's a great idea. 

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

    ang74...that's 4 of us now!...go us! :)

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

    I am allergic to pollen. I wonder if taking bee pollen would desensitize me?

    There's news today on a Swedish study combining antivirals and NSAIDs to reduce brain tumor growth.

    http://www.sciencedaily.com/releases/2011/09/110927072612.htm

    "Our experiments on mice show that tumour growth declines by around 40 per cent when antiviral drugs or COX-2 inhibitors are used separately, and by no less than 72 per cent when used in combination," says Professor Söderberg-Nauclér, adding that this effect is achieved without using chemotherapy.

    Since both the drugs used in the study, an NSAID that inhibits CMV replication and inflammation, and the antiviral Valcyte (Valganciclovir) for CMV infection, have relatively good adverse effect profiles, the researchers now see immediate opportunities for studying their impact on different forms of tumour. Antiviral drugs are also selective and largely affect infected cells.

    "These are very promising and exciting results," says Professor Söderberg-Nauclér. "The virus infection isn't cured by the treatment, nor is the tumour, but the virus in the tumour decreases, which affects its growth. This therefore presents a new approach to treating tumours and could henceforth be used as a possible complementary therapy."

    -------

    This is interesting because a friend of mine got BC at the same time I did. She and I were on vacation together with our families the year before our diagnosis when my daughter came down with chickenpox. Most likely coincidence, but makes you think if there is a viral element to our BC.

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

    i think there are more people heidi who think that.,,,tasmanian devils have been dying at an alarming rate in tassy from cancer, which is thought to be transfered by the fighting and biting they engage in every night. Some who were cancer free were removed to mainland Australia to set up a breeding program in case they wiped themselves out as a species as they are so aggressive....it made me think alot about cancer possibly being set off by a virus...but i dont bring it up as 'coffee talk' lol...

    On the other hand....of the few medically documented cases of unexplained remission over many years, most reported a high grade fever with infection prior to supposed remission (TB etc)...i used to dread the thought of another bout of influenza after the one that nearly knocked me off a couple of yrs ago, but after reading all about this theory, i dont mind if i catch something that gives me a high fever now :)  the flu i caught 2 yrs ago was scary!, i had facial neuropathy for 2 weeks afterwards, and mild depression! which apparently can be a body response to the bug and not just feeling like crap. It was horrid.)  a body infection may help by rebooting tcells....eta: not talking about during chemo here, i know that it is scary stuff to have a fever while doing chemo.

  • thats-life-
    thats-life- Member Posts: 1,075
    edited September 2011
    The link between cervical cancer and HPVKey facts:
    • HPV is a virus (the human papillomavirus).
    • Almost all abnormal Pap smear results are caused by HPV.
    • Anyone who has ever had sex can have HPV - it's so common

    that four out of five people will have had HPV at some time in

    their lives.

    • In most cases, it clears up by itself in one to two years.
    • In rare cases, if the virus persists and is left undetected, it can

    lead to cervical cancer. This usually takes about 10 years.

    • A Pap smear every two years can detect any abnormal cell

    changes caused by HPV, which can then be monitored and/or

    treated to prevent cancer.         Health.gov.au

  • Kaara
    Kaara Member Posts: 3,647
    edited September 2011

    sweetbean....where do you buy the Avemar?  Can it be found in a health food store, or does a dr. have to prescribe it?

  • sarahlou1967
    sarahlou1967 Member Posts: 153
    edited September 2011

    Hi Ladies,

    Hope you dont mind me joining your thread, sounds interesting, I am also at stage IV with it on my lungs from the start, just got out of hosptial after having a MX with lymph node clearance. I'm up for trying both conventional and unconventional treatments to try and fight against this nightmare.

    I have been juicing mainly organic carrots, brockli, curly kale, cucumber, celery, apples, oranges, wheat grass, beetroot, I do at least one green juice a day then the other in the evening. Feel more invigorated after wards and have more energy. I've also cut out sugar and only use the xylitol natural sweetner, i think its made from birch sap, looks like sugar and taste ok. Cut out drinking tea and coffee unless its green tea or a herbal one. Take a lot of supplements mainly evening primrose oil, acai berry, cranberry, vit c,e,b6, selenium with zinc, probiotics, co-enzyme q10, homemade hemp oil capsule. 

    Try to get a crystal healing session in at least once a week or go to a spiritual healer, also want to try acupuncture and yoga once my surgery is all healed up.

    Thats - Life - Your thoughts on cancer being brought on by a virus got me thinking and last year I caught a really nasty virus, was very sick with it and spent the whole of november ill in bed, then this year end of feb got dx with BC. Its an interesting theory. 

     Sending love and light to all

    Sarah sweety xxx 

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

    Wish they could do a pap smear on our breasts. Ductal lavage? (This tests milk collected from the ducts.)

    http://www.nature.com/bjc/journal/v101/n8/full/6605282a.html

    http://www.nature.com/bjc/journal/v102/n4/full/6605550a.html

     Another reason to have my daughter vaccinated against HPV - it might just prevent her from getting breast cancer.

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

    heidi ...how interesting were those articles!...re  'a pap smear every 2 years can detect any abnormal cell changes' , so many women dread the minor discomfort of a pap smear, imagine making them line up for milk duct smears..lol..but we have something (for now) that can detect early cell changes in breasts, and that's breast MRI's. But they are not readily available and affordable to women (and men). I have read documented evidence that breast MRI's ability to detect early cell changes and very early cancer, indicates that it could be used as a tool for prevention. But you will find that it is worded in public information as 'the role of breast MRI as a preventative screening tool is still under observation', or something to that effect. I believe it is a cost issue. There are women on this board who have used breast MRI as a BC preventative, and had clusters of abnormal cells removed from their breasts, and continued monotoring by breast MRI's. But it's not publicly promoted. (of course) I have told my daughter to insist on breast MRI's in the future (she will qualify for free MRI's because of my BC) I have explained to her that it is possible to stay one step ahead of this disease with knowledge and information. I hope so for her sake anyway. :) maybe there will be better screening tests in the future. I hope so for our girl's sake.

    Hi sarahsweety!...glad to see you here :) How are you going with your lung mets? your diet sounds great! any input is very welcome :)

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

    Heidihill,

    bee pollen will definitely help your pollen allergies, especially if you can find local pollen.  that was actually why I started it initially.

    Kaara,.

    You can buy Avemar Ultra on-line - the cheapest price I have found is $140/month.  Again, not cheap, but there is so much good research.  My integrative MD recommends it highly.

    Re: the virus theory - I had a RAGING case of mono almost exactly one year before I got diagnosed.  Now, my tumor was 5cm, so it was clearly there for a while, but still....I often wonder if the virus gave the cancer a big boost.  My sister has just gone through mono (twice in her life, which is odd) and now she is juicing, etc and living a more anti-cancer life.  Makes me happy. 

  • sarahlou1967
    sarahlou1967 Member Posts: 153
    edited September 2011

    Hi thats-life,

    Thank you for giving me a warm welcome to this thread, and for asking about my lung mets, so far they do not cause me any trouble I can hike, ride my bike, and walking absolutely fine, its the thought of it on my lungs that does my head in, but at least as time goes by I am learning to live with it and try to get it out of my head, if I think about it too much I find my breathing starts to play up.

    Food wise I have changed for the better but it takes a lot of perserverance and positivity to stay on such a diet even I falter some times but i am trying my best to help myself. Even looking for soy free meat although I dont really eat that much meat anyway certainly no red meat. Looking at trying to find a supplier of wild meat ie: pheasant or rabbit (i'm in the uk) as this is not fed on soy based pellets.

    Love and light

    Sarah sweety xxx 

  • lulubee
    lulubee Member Posts: 1,493
    edited October 2011

    I just read this entire thread in one sitting and my head is all awhirl.  Wow.  This is a fantastic conversation going on here! Just want to say thanks for all the effort you all are putting into this discussion.  I will add as I can.

    ~lulubee 

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited October 2011
    This was in the news a few years ago.
     
    Clinical Cancer Research 564
    Vol. 10, 5647-5649, September 1, 2004

    The Biology Behind
    Mouse Mammary Tumor Virus-Like Viral Infection and Human Breast Cancer
    James F. Holland and Beatriz G. T. Pogo
    Mount Sinai School of Medicine, New York, New York In the last half of the 20th century the possibility that human breast cancer might be intimately associated with oncogenic viruses was often suggested. This followed naturally on Bittner's demonstration (1) that a virus caused breast cancer in mice. Convincing data, however, eluded workers before the molecular biological revolution. Robust evidence has now been presented in a series of papers demonstrating that a sequence highly homologous to a unique 660-bp segment of the mouse mammary tumor virus (MMTV) envelope gene is present in 38% of American women's breast cancer (2, 3). The sequences were found to be expressed in most of the positive tumors (4)

    ~~~~~~~~~~~~~~~~~~~~~~ 

    Similar rates of the virus were found in Breast Cancers in women from Europe, Australia and elsewhere.
     
     
    I had to laugh when I read that they don't know how women get the mouse virus.  We get mice every year or two and they leave their droppings in food preparation and storage areas.  That's what attracts them into the house, along with the warmth and shelter. 
  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited October 2011

    I can't figure out who's blog this is or where the information comes from, but it's worth following up.

    ~~~~~~~~~~~~~~~~ 

    Breast Cancer Virus Infection

    Breast cancer virus or bacteria infection. Do viruses cause breast cancer? Because mouse mammary tumor virus (MMTV; the Bittner virus) is the proven cause of breast cancer in both field and experimental mice, similar viruses have long been suspects as a potential cause of human breast cancer.

    A nondisease-causing virus kills human breast cancer cells in the laboratory, creating opportunities for potential new cancer therapies, according to Penn State College of Medicine researchers who tested the virus on three different breast cancer types that represent the multiple stages of breast cancer development.

    MMTV-like viral genetic material has been identified in human breast tumors, but there is no definitive evidence whether MMTV is causal and not merely an innocuous infection in humans. High-risk human papilloma viruses (HPVs), Epstein-Barr (EBV), and other viruses also have been identified in human breast tumors, but again there is no definitive evidence for a causal role.

    Breast Cancer Virus: Adeno-associated virus type 2 (AAV2) is a virus that regularly infects humans but causes no disease. Past studies by the same researchers show that it promotes tumor cell death in cervical cancer cells infected with human papillomavirus. "Breast cancer is the most prevalent cancer in the world and is the leading cause of cancer-related death in women," said Samina Alam, research associate in microbiology and immunology. "It is also complex to treat."

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

    This is where I heard this story in 2007:

    Catalyst, (Science show), ABC TV, Australia

    CANCER CLUSTERS (11/10/2007) 

    TRANSCRIPT
    Narration ABC's Brisbane headquarters at Toowong used to be a hive of activity.

    Around 500 staff worked here every day. But now, it's an eerie ghost town.

    In December 2006 the entire facility was shutdown due to fears it was home to a cancer cluster......an unusually high number of cancer cases in the one environment.

    Dr. Maryanne Demasi About 50 Meters away behind me is the Toowong news room. Now ABC management is so certain that it's an unsafe environment that no women are allowed anywhere on site. So my all male crew will go in without me for a look.

    Narration Since 1994 sixteen women who worked here have developed breast cancer. A further twelve are known to have developed non-cancerous breast abnormalities.

    And of those 28 women, 22 worked here in the television and radio newsroom. Even more chilling is that 10 of those with breast cancer worked much of their time at this single group of desks.

    Lisa Backhouse There was no family history, predominantly young, healthy women and in such a small confined space and in such large numbers we knew there must have been a problem.

    Narration A breast cancer scare of these proportions is unprecedented in Australia and probably the world. But to these women the experience has been all too real.

    ..... snip ....

    Narration ... One other thing not investigated was the possibility that a virus could have induced the cancers. Professor Bill Rawlinson is head of the Virology division at Prince of Wales Hospital in Sydney.

    Prof. William Rawlinson There's no doubt in my mind that we will find viruses in a number of conditions that are currently of unknown cause.

    Narration It has been known for decades that a virus in mice, called ‘Mouse mammary tumor virus', or MMTV causes breast cancer in these laboratory aminals.

    Professor Rawlinson's team and other international scientists have discovered a similar virus exists in humans.

    Prof. William Rawlinson We have no direct evidence that the MMTV like virus causes breast cancer in women.

    Prof. William Rawlinson In women with breast cancer we find the MMTV like virus in around 40 to 45% of their tumours. The association does not prove causation.

    Narration But further investigations will continue.Pathologists at Princess Alexandra Hospital are about to begin examining biopsies from the Toowong women looking for a range of things including a mammary tumour virus.

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

    hi lulubee :) one sitting!, no wonder your head was whirling lol...my head is often whirling with this thread, but it gives alot of food for thought, and thought of food! i really enjoy our chats here.

    jlw....i have often heard of these clusters of cancer. I tried to find stats in australia for cancer clusters last year,but didnt find anything on the internet.I wondered if it was information that is not readily given out to the general public. I was looking for cancer figures in towns in my state. When i lived in Tasmania there was a gorgeous little country town where they had a yearly folk festival. It had one of the highest rates of leukemia in the world (per whatever its called) it was in a little valley, surrounded by hills of apple orchards. The sprayers flew over the hills spraying pesticides, which eventually settled on the town/valley floor....it was thought that this may have contributed to the high rate...sad.

    Another interesting point. There is an oil refinery near my town. I found some stats once that stated that the closer you live in a radius to this refinery, the higher the breast cancer rate,but i cant find the stats again. Also mental illness/domestic violence rates are higher near there.........

    So we have potential virus'..pesticides...pollutants...

    now my head is spinning :)  Surely we can do something about the effects of these potential triggers, at least by giving our bodies the best chance with a pumped immune system and low calorie/sugar diet. Even with my heavy tumour load, I still believe i can help my body fight disease. What have i got to lose :)

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

    sarahsweety: hiking!...wow, im happy for you that you can enjoy so much of life with lung mets. I have to be careful with all the bone mets. If i do too much i have days of pain. I have a physio coming over in a couple of weeks to help me work out an exercise routine around bone mets...yay

    oh yes, and eeewwww to the mouse virus...yuck!

  • Kaara
    Kaara Member Posts: 3,647
    edited October 2011

    that's-life:  Yes there are cancer clusters near fruit groves.  My son lives in one in the West Palm Beach, Fl area.  There has been a lot of controversery in the last few years because so many children were coming down with a similar brain cancer.  They have tested the soil, the water, tried to target an industrial plant nearby, but so far, nothing.  This was once an area of orange groves that were sprayed regularly with pesticides.  It's a beautiful area with acre plus parcels and the people who live there love it.  The investigation continues to find the cause of this cluster.

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

    An interesting and non technical explanation of some processes involved in the lives of cancer cells: (via the research forum)

    http://yourlife.usatoday.com/health/medical/breastcancer/story/2011-10-02/Targeting-cells-microenvironment-to-fight-breast-cancer/50638558/1

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

    kaara, that is very sad about the children and brain cancer.

  • Kaara
    Kaara Member Posts: 3,647
    edited October 2011

    I am more than halfway through Suzanne Summers book "Knockout", and find the information in there to be very educational.  I would suggest that anyone facing or living with any kind of cancer diagnosis read this book and the interviews with the alternative and integrative medicine professionals that deal with their treatment methods and the testimonies from their patients.

    I have always been a fan of healthy eating and exercise, as well as detoxification and taking supplements, and this book further drives that point home.  Whether you opt for conventional treatment or alternative treatment, nutrition is such an important part of managing the disease.

    I'm sure there are many books similar to this one out there, but I just happened to pick this one up over the weekend and it confirmed a lot of what I was already thinking. 

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

    http://www.medpagetoday.com/MeetingCoverage/ECCO-ESMO/28731 Re Zolendric acid:  Note the references to PREmenopausal women..I have taken a calculated risk (i.e. fracture risk/blood calcium levels/scans) and delayed starting zometa, despite intense pressure from oncs, for a year now. I had a belief/thought/theory that if bisphosphonates made the environment hostile to cancer cells in the bones, they would migrate to soft tissue organs. I discussed this thought of mine, as a way of explaining my hesitations, with a professor/senior BC onc recently. He stated that a Japanese professor had wondered the same thing, but studies showed that bone mets cells went to bone, liver mets cells to liver..not bone to liver....etc..so i agreed to start soon. He said :"Oh, you dont need zometa, an oral bisphosphonate will be fine'....that sentence has played on my mind since..."Why dont i need zometa? (after a year of other oncs pushing me..and as much as i was happy not to have it..) if it's standard treatment?....Now im thinking, maybe he knew of this study?..maybe...I must say that this was a study on stage II and III women, but still..it makes you think..maybe bone mets cells or the bone marrow do influence progression?...

    Im very tired of those words: 'we dont know why/how...bla bla...'

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

    Here is the other link:

    http://www.medicalnewstoday.com/releases/234976.php

    Zoledronic Acid Reduces The Recurrence Of Breast Cancer In Post-Menopausal Women

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

    Wow, so premenopausal women treated with this drug had an increase risk of recurrence because it drove the cancer out of the bone and into the soft tissue?  Scary!

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited October 2011

    thatslife   ...  I read this article and found it interesting that the story of this man, who had bone cancer, had a bone marrow transplant.

     http://stanfordhospital.org/newsEvents/newsletters/healthnotes/rewriting-immunitys-rules.html

    I' know that the bone marrow produces needed cells for our immune system. I'm an advocate for building our immune system...and  if we can get our immune system doing its job then we're the better for it.

    I'm not aware of the drugs you mentioned, but love that you are really thinking it through.

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

    sweetbean: premenopaual women, it seemed from the study may have an increased risk of recurrence on zometa, but the migration from bone to other organs is just my (unproven)thought/theory. And some Japanese professor's (unproven) thought/theory..

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