An Alternative approach to Stage IV Health and choices

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  • 3littlegirls
    3littlegirls Member Posts: 853
    edited August 2011
    file:///Users/davinala/Desktop/AFOprogram-N.pdf
  • 3littlegirls
    3littlegirls Member Posts: 853
    edited August 2011

    I tried to add it and can't seem to figure it out. If you want to PM me and I can send it to your email address.  

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

    3littlegirls, do you take the curcumin as a pill?

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

    3littlegirls, that is a lot of vitamin c and d! That melatonin dose is also triple the amount my ND suggested (which I didn't take). I eat a lot of curry but now I'll eat even more. It's great with vegetables, of which I try to get 8-10 portions a day along with fruit.

    Thats-life, I did have bone mets which no longer show on bone scans and FDG-PET scans for more than 3 years now. As I had a mastectomy for the primary and ALND for node mets, I was given the all-clear and have gotten clear results each check-up. Where am I digging? A couple of places, actually. You know, our job never ends until they find a cure. One place is intermittent caloric restriction.

     http://www.eurekalert.org/pub_releases/2009-08/aafc-twy072809.php

    Another is the use of electromagnetic fields.

    http://www.sciencedaily.com/releases/2011/08/110812163333.htm

    Joylieswhithin (and others), sorry for my being snarky. Now I get what you meant. Duh. (Slapping my head too.)

  • rpailleret
    rpailleret Member Posts: 47
    edited August 2011

    Michelle,

    If you could post the whole list that would be great...Do you take tumeric in a pill form? Had not heard of wobenzymes, will ask my dr.. about that. Would love to know what you did in Mexico. How are your markers during this treatment? 

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

    I had my onc appt. today. I asked him about the vitamin c infusions and he said a number of patients are doing it, so he has no objections. Now I just want to check with another doctor that this is ok for someone with autoimmune issues. Anybody know?

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

    loving the info everyone...lots to look into...

    heidi: good news about oncs ok for vitC infusions...i am interested to hear what your other doc says re autoimmune issues and if they ok it too..

    wobenzymes....can you tell us more 3littlegirl? are they prescribed or over the counter? PM me if you have the time with the mexico experience, im very interested in all approaches

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

    I do take Curcumin in pill form.  It is still best taken with black pepper but I never seem to remember as I am swallowing so many pills.  The Vit D is high but it is what a few ND's have suggested. I know the FDA approval for most Vitamins is at a level to keep you barely healthy and outdated.  I have been assured that the level to overdose is way higher and I am well in the normal range.  

    I will post the list tomorrow.  Once again it is late :P  and I went to bed so late last night I should get some sleep. I will post the list and what I had done tomorrow. 

    I have never had tumour markers tested.  My Oncologist here doesn't use them.  I have a CT scan coming up in a few weeks and I am beyond anxious to know what is going on.   

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

    3littlegirls: will these scans show you whether you have responded to the dendritic vaccine?..wow, that will be a hard wait for you!....how have you been feeling? also, are there any side effects from the Vit C infusion? How long does it take?

    Heidi: i just read the links you posted on caloric restriction...very interesting!...it fits with my theory that how we lived prior to overpopulation and the industrial revolution, is how nature intended us to live....it fits with life when we would increase caloric intake during winter, be more sedate, more animal fats, etc...and then the leaner months of spring and summer, with intake of new fresh fruits and vegetables and herbs, and more 'exercise'...burn more energy..makes sense..

    I mixed up a batch of tumeric and black pepper, the goal of a teaspoon a day..after a few days i was sick of the taste of it..lol..tried it in curries, with scrambled eggs...blahhh, spoke to an indian friend who said they mix it with a little oil and use over salad..anyone have any other handy ways to consume it daily??

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

    thats-life, i also find it fascinating. I see it in terms of the body being challenged. Chronic restriction means the body gets used to it, while intermittent means the body has to adjust all over again. That's also why I try to change strategies every once in a while. I had a massage phase, a hyperthermia phase, a high-intensity cardio phase, a high-intensity resistance phase, a rowing phase, a swimming in cold water phase. This summer has mostly been about hiking. Now I'm trying to get into running.

    I like the way you think of it, in terms of the seasons. I wonder if vitamin d is also better taken in seasonal doses, intermittent vitamin d restriction, also known as winter.  

    I may have to postpone the vitamin c, as I don't want to have to see a doctor again. But I will tell you if I do start taking it.

    I've just read that turmeric contains only a small amount of curcumin. So I will have to go searching for the pills. Then I'll start my curcumin phase. Actually, ayurvedic medicine interests me a lot, too. I want to plan a trip to Sri Lanka next year. A friend of mine went into remission from her autoimmune disease after spending time there doing ayurvedic stuff. Really interesting.

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

    Honestly just buy the pill form of curcumin.  That way you can easily get your daily dose with out getting sick of the stuff.  I was trying to do the Tumeric as well and I love curries but you can only eat so much turmeric before you get sick of it.  The best brand I think is the AOR. 

    The scan will tell me how I responded to the dendritic vaccines as well as everything else.  I am seriously thinking of calling the hospital and saying I have pains or something so they will rush me in for a scan.   The Dr in Mexico wanted me scanned early Aug.  I am still waiting.  So yes I am going a little crazy.  I don't have an appointment until Sept 20th with my Onc and that is when I will get the results for the scan. It will be 4 months by then.  Ifile:///var/folders/Q5/Q5DipivPEZK3ZfvBth-a5++++TI/-Tmp-/com.apple.mail.drag/AFOprogram-N.pdf 

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

    Does anyone know how to insert a pdf file onto here?  I can send you all the info via email but have no idea how to insert it. 

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

    Oh and no side effects to Vitamin C . I used to get cold and a little shaky which is just your blood sugar levels dropping. I just bring a snack and then I am fine. I actually don't get that anymore.  It can also make you super thirsty is it is mixed with saline. So I just bring lots of ice cold water.  I have no symptoms of this disease. It was in my bones but those lesions are gone. And  I have great energy levels.  

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

    Hi there,

    I am not Stage IV, so I hope you don't mind me kind of butting in.  I am doing mistletoe, low dose neltrexone, homeopathy (from a doctor in India - Poonam Jain), and Avemar.  I will do the mistletoe and homeopathy for 12-18months, then I am thinking about switching to Chinese Herbs from this guy named George Wong in NYC.  The Avemar I may do for five years - it is supposed to work well with Tamoxifen, plus it is a PARP inhibitor.  After the five years are up, I may start the Vitamin C infusions.   

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

    always welcome sweetbean:)

    Heidi: i have an appointment with an ayuvedic doctor in september.he has a clinic in the capital city nearest me. His fees are mostly recoverable by our medicare system, which gives me some comfort that it is considered a legitimate practice. he spoke to me about my disease, will create a plan, and diet and supps, all for $70.00...not bad..i will bring the list he 'prescribes' home, and then research it thoroughly before i consider following it!,  i will let you guys know what he suggests...but im very interested  in an approach to life that has been around for 5000 yrs minimum :)

    re intermittent assaults: i have been thinking this week that i might begin with the anti candida diet,in case my health issues are fungal.(i.e. sinusitis fungal skin issues eeeoow, inflammation allergies etc even the cancer?)..then onto the cancer healing protocol by an aussie fellow who had stage IV cancer ( as it is just high level nutrients, good food, meditation, nothing harmful :)) then onto a cancer maintenance diet, which has more immune building/calories..

    My thought for the day: if very latest research shows that cancer stem cells are not a particular type of cancer cell, but can revert to normal cancer cells, and vice versa, then the thought that stem cells are harder to destroy, and may be the key to mets, may be wrong,... and the possibility of using alt approaches to REVERT (my new favourite word) cancer cells back to normal cells is still possible..

    My other thought for the day: if it is the microbes in cancer cells that need to be destroyed, and they are either viral, bacterial ( i had severe mastitis when breast feeding) or fungal, then anti fungal diet, immune system building diets are a good place to start. :)

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

    thanks, that's life!

    what constitutes an anti-fungal diet?  rpailleret, you mentioned no mushrooms because of fungus, but I thought they were supposed to be good for you. I am taking the Mushroom Wisdom Maitake D extract - it's supposed to be very anti-cancer.  Thoughts?   (I really love portabella mushrooms...they are the closest I get to a steak these days...)  

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

    sweetbean: by anti fungal, i mean anti candida/yeast free diet..also im going to avoid peanuts, cashews, melons...while doing this stage one attempt at turning things around in my body.

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

    saw an ENandT specialist recently, he prescribed 3 months low dose antibiotics (doxycycline) for chronic sinus prob. maybe i should do it..not sure...have athsma, allergies..inflammation city here :)

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

    oh i wish we could all sit around and share our findings. i am also doing Mistletoe injections. i do so many things i forget to mention them. anyway one thing i wanted to bring to the table is becareful of your copper levels. copper promotes blood vessel growth and that us what the tumours want. especially if you have a larger tumour vs lots of little ones. i was trying to be vegan ( i cheated a lot) but my new ND oncoloylogist said not too because most of the foods vegans eat are high sources of copper. i was tested for a bunch if thungs and while on a vegan diet my colestrol wqs too low ( who knew that could be a problem?) anyway just a heads up as for the last year i was eating a high copper diet thinking i was eating right. curcumin is good for inflammation as well.

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

    also there is a chemo sensitivity test you can get done to test to see how well you respond to certain chemos as well as alternative therepeutics. it also will tell you if you are alergic. i did it and it came back the mushroom Maitake did not get a response. It is expensive but might show you a weakness. This testing is done in Greece.

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited August 2011

    I have been using supplements and eastern medicine right along side the traditional western medicine.  There is such value in using everything available and I am very fortunate to have a treatment center that encourages the treatment of the entire person.

    Foods play a role and the removal of over processed foods and gluten makes joint pain from the antihormonals tolerable; the concord grape with antioxidents is fabulous; garlic and ginger add flavor and are quite helpful in many ways including keeping mosquitoes away helping to avoid those illnesses they carry - not the thing we need with an already compromised immune system; cummin, turmeric and curry are excellent and do come in capsule form but I like to cook with them; water; yoga can be wonderful but many of the moves are too taxing so Yoga on the Bed and Yoga with a Chair are good choices; music of all kinds can totally change your mood; pets are such great companions and studies have shown they can reduce stress and lower blood pressure; and there is so much more! 

    The things I have listed are easy and readily available for everyone - depending on your committment to what degree you wish to use alternatives, be sure discuss things with the oncologist so you are not hurting yourself. 

    I will be starting chemo next week for the new mets and have much research to do so I am off...more later.

    LowRider 

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

    Low, I am so sorry to hear about the new mets. Hope the chemo works quickly!

    Actually I first heard it from you that a gluten-free diet alleviates antihormonal pain. I eventually did try reducing my gluten drastically and it seems to have helped. I have been pain-free this summer! Thanks for the tip! (I'm hoping it's the lack of gluten and not that Femara is no longer working.)

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

    hey lowrider, im sure you will stay on top during chemo with all the support of a great treatment center, wish we had one where i am, sorry to hear about new mets, are they still bone mets?..i would love to hear more about the eastern medicine you mention. Re music: so true, i have youtube nights!, where i start with one great song/memory, which triggers the next song memory, or sometimes a suggestion in the side bar leads me in another direction, i love it :)

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

    lowrider, just read your story, what an ordeal..take it easy :)

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited August 2011

    While I realize that alternatives instead of traditional treatment is the main topic of this thread, I do believe that at stage iv, it is the melding of the two that gives the best results.  Early stages have a better opportunity to make use of the alternative treatments only but with care as once the horse is out of the barn, you can't put it back in. 

    Had to mention that as it is important to know that there do exist some very effective non-traditional treatments although I have not elected to try them.

    thats-life...on the music.  Think of the way you mood is altered by those memories of the songs you hear.  What mood would you like to feel at the moment?  Are you stressed?  Listen to something that puts you in a quiet place, invokes a memory sure to put a little smile on your face and in your heart.  Hearing bad news can be changed in the way your mind processes the infomation by selecting either a totally silly happy song with no connection to any particular memory or again, one that invokes a happy thought.  Often, certain instruments play to parts of your body and mind along with the tempo, tone and the touch of the keys on a piano or the drum - slow beats can slow the heart rate and calm an anxiety episode, soft keystrokes and muted drums invoke a slower and quieting of the thoughts.  On the flip side, exciting news, good news that makes you want to sing from the mountain tops can be enhances with more rapid tempos and heavier keystrokes producing more resonance which prolong the euphoric feeling and does release more of our natural endorfins someitmes replacing the need for medication but more often, enhancing its effect allowing us to use lower doses to attain the desired level without the 'overkill' that some medications can bring on - that horrid sensation of feeling numb and unable to feel a full range of emotions.  I do take antidepressants and antianxiety meds but rather than step up to the recommended dose, I stopped at low doses and work with music and yoga to reach the level of control without losing the ability to cry and feel sad about things that you should feel sad about but without the immobilizing panic that used to come.

    Eastern medicine has been around for a long time.  Acupuncture is a wonderful addition to any treatment plan - primarily it will be begin with pain relief but there is so much more!  I have such a good relationship with my acupuncturist that if I let her know I am going to be taking a road trip, she will pay special attention to the areas that are most effected by sitting in a driving position for an extended period of time - for instance, there are 2 very powerful areas on the back of the hand that the insertion of a 'tack' can offer days of relief.  You will be leaving with 4 little needles and they should only stay in for no longer than 3 days but I had no significant issues during the entire 12 hour drive. 

    Another example (I am using myself here as it is who I know best) is the use of the needles in helping control incontinence.  It takes some time but each body part is connected to pressure points and the nerves all tie into the spine in some way.  I tried a traditional medicine and all I ended up with was blurry vision, an unbearable dry mouth and not one bit of improvement in the incontinence.  I quit taking it and we have been working with the needles.  It will take time but after 2 sessions concentrating on the bladder, I was able to go better during the day which did start to make me aware of the need to go during the night and stopped me from soaking the bed as I was waking when the diaper was full and got up to go and change it.  This was huge to me as not having to change my sheets everyday saved my back! 

    You can couple the acupuncture with acupressure as many of the same 'points' react to pressure as well the needles and can be done by yourself.  Just as in yoga, there is a 'center' and meridians - I could go on and on.  What I can do is gather some of the materials I have been using and send you a PM with a list of some things you may want to pick up.  My sister is very much into healing and has also offered some excellent advice in the area of using herbs and body points that stimulate areas not normally stimulated through normal bodily functions. The biggest of these is the lymph node system.  It really has no natural means of stimulation - it could be why it is the path of least resistance for the spread of the cancer cells.  It does follow many of the same meridians so using the acupressure along the meridians will provide relief. 

    I am just learning some parts of this but I find with each new discovery, it takes me to wanting to learn more and more and with the encouragement of my treatment team, treating the cancer is only a part of it - there is a person that has cancer in need of the same care and attention I have always needed - to ignore that means only the disease gets treated.

    Enough of my babble for now...

    Hugs all

    Low

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

    I am glad you found an excellent acupuncturist. Now that you will be doing chemo, she may also be able to help you boost your immune system. Also in line with your holistic approach you may want to try self-massage with warm argan or avocado oil. Massage your whole body everyday. I did this all throughout chemo. My skin was glowing! 

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

    very true on a number of points you made.. i  believe i can heal my body, if not to cure it, then to make it strong to endure this disease. I would love the info on acupressure, i can do that...acupuncture?...dont think i could handle that....yoikes...im a little bit needle phobic, the thought of driving on a holiday with needles sticking out of my hands..???!!! lol...

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

    I am phobic too, so as much as I believe in acupuncture, I will leave it as my last resort. By then it will probably be too late. Maybe acupuncture can fix my phobias. LOL. Yeah, Low, I'd love to read your accupressure tips. I used to self-massage everyday during chemo. It helped me relax and supposedly massage boosts the immune system!

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

    Dear friends, look for this thread in the research section.  Metformin and anti-oxidants combined starve cancer. - At least in the test tube.  Since metformin has shown promise and is undergoing trials, it makes sense that the anti-oxidants are the missing link.  They know the biochemistry behind it... from Boston University... 

    When glucose supplies run short, NF-kB moves energy generation to an alternative process that doesn't rely on glucose. But blocking NF-kB in cancer cells leaves them unable to make this switch and so they ultimately die.

    By targeting this protein complex, the researchers showed they could kill bowel cancer cells in the lab. To mimic the effect of glucose starvation, the researchers first treated the cancer cells with a molecule that blocks NF-kB, though by itself it has no effect on survival. But when combined with the diabetes drug metformin, which blocks alternative methods of energy production, they effectively besiege the cancer cells so that they starve and die. 

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

    Thanks joylieswithin.  Love reading hopeful studies. 

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