What is your approach/"protocol"?
Comments
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Coincidence? I'm have type A+ blood. The hospital checks it before surgery in case you need a transfusion. I bought the bloodtype book. Afterall, it was only a couple dollars. I can't remember what I read in it, but I didn't find any validity in it.
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Whoa... I am either A negative or AB negative (can't remember which)... that is crazy!!
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Type O here. Hummmm I have had skin cancer and stomach issues and breast cancer.
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Bravo to Seaotter and Efflorescing! I couldn't agree with you both more!
Twa, perhaps you haven't noticed that you are preaching conventional treatment and strongly ANTI-alternative treatment on an Alternatives board? What is your point? Have you suddenly been elected an all-knowing God to so arrogantly proclaim that anyone who forgoes conventional treatment for an alternative protocol WILL have a recurrance, whereas she would NOT had she chosen a mainstream approach? Are you not aware that over 40,000 women in this country die of breast cancer every year, the vast majority of them having followed their doctors' orders to the proverbial "T"?
And you have the audacity to call yourself someone's friend? Lord help your friend! With friends like you, who needs enemies! You may not agree with your friend's choice of treatments, but, as a FRIEND, it is your duty to support her. You may well choose a different path for yourself, and you might wish to share your feelings with her, but to positively gloat about her suffering a recurrance is absolutely revolting.
The people on this board are here to discuss alternative treatments, to get AWAY from the likes of you who blast us with their "all knowing" proclamations about the success of mainstream treatments and the failure of alternatives. We may not have all the answers, but surely, YOU don't!
Please display a modicum of respect for those with opinions differing from yours, and if you want to holler about how wonderful chemo and radiation are, do so on a forum where such opinions are welcome and discussed.
This forum is for discussion of alternative protocols, got that?
Maddy Mason, Hudson Valley, NY
seaotter wrote:
Twa, again do you have cancer. Why are you here? You have given your two cents now leave. We are already tired of your crap.
Efflorescing wrote:
Twa
It's a sad day when adults reduce themselves to school yard tactics for the sick thrill of becoming cyber bullies on a breast cancer website. It would be such a disappointment to find that I have two faced friends like you who harbor toxic thoughts towards me behind my back.
Not sure what your hidden agenda is or why you are so bitter and hateful but your approach is neither productive nor appreciated. You have crossed the line from difference of opinion to hateful and bullying so hopefully after I report you, BC.O will put and end to your days as a text terrorist.
Carole
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Twa, I am curious about your postings. I notice you insert the devastating experiences of your friend who chose non-conventional treatments in various threads in the Alternative fourm. Well, you have indicated on other posts that she had positive nodes and that is another animal altogether. If you have postive nodes or evidence of lymphvascular invasion, it takes an integrative approach to treat that stage. You take the best from both worlds.
You have referred to fresh raw food as "icky"; you have indicated that there is no room in treating breast cancer other than conventional poisons and radiation; you have plainly indicated that you are a member of the "standard of care" majority. Well, good for you. But I have friends for who conventional therapy depleted their quality of life and did not add to their overall survival.
I was unable to do chemo or rads due to secondary health issues. I was very lucky; I had favorable features despite my tumor being very aggressive, so I have chosen a sophisticated evidenced based protocol and life style changes. I will not defend my choices here, but I want you to know that your remarks are not helpful. It is quite clear that you are on a mission to demean those who are trying to take some control of their health back from the vertical marketing oncology business. But this is not the place to do that. We are sharing our info and knowledge here because we must. Did you know that many promising treatments are bought up by Big Pharma and shelved so that maximum R and D money is extracted from current modalities? I worked on one such molecule as a research assistant at a major University.
I will not put my faith in an oncology system that not only suppresses promising therapies but didn't even notify me that I was severely deficient in Vitamin D. Yet when I alerted my doctor of this problem, they didn't even recommend supplementation. If that is good medicine, then I am done with it.
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Twa, how would you feel if I posted on the chemotherapy thread about my "friend" who not only had her bc progress after chemo, but suffered terrible life altering side effects and had no benefit for it all? Your posts smack of confabulation, and if they are true, they are still toxic and don't have anything to do with what we are trying to achieve here. We are sharing info and working on progressive, sophisticated protocols that actually have a fair amount of research which backs their medical effects: Curcumin, methylating compounds in green juices, ginger, garlic, sulforaphanes, Loxin 5, low dose naltrexone, and many others, all have research which supports their use in this setting. For those who can avoid chemo, life style changes will give them tremendous advantages; for those who did chemo, these changes will help them build back up and help prevent recurrence. It is not voodoo, it is scientifically valid.
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MsBliss- Thank you for the powerful and well-reasoned thoughts.
I hope you will post more often so we can learn and be inspired by you.
Lucy
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Very well said, Ms. Bliss! And so many drugs are derived from natural substances anyway -- just altered to a point where they can be patented. I'm actually taking an RX now that is nothing more than 3 very high dose B vitamins. Not sure how a drug company came up with that one, but I wouldn't be surprised if we start to see more and more of a melding of natural healing with the best of traditional modalities. UCLA, for example, now has an entire department of integrative oncology.
From UCLA's website: We believe that comprehensive cancer care treats the whole person, not just the disease. In the quest to optimize wellness most patients want and need information, guidance and support that addresses nutrition and supplements, mind/body approaches, psychological concerns and more.
And this website might interest you: http://www.ccim.med.ucla.edu/
Deanna
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Well said, MsBliss. I think Twa maybe confused about this friend's situation anyway... the friend supposedly went to the Hippocrates Institute and went on a macrobiotic diet?? That makes no sense, since Hippocrates is based upon a raw vegan diet... quite different from a macrobiotic diet in which everything is cooked, and is heavy on grains (as opposed to raw, which is heavy on vegetables and fruit). If she "threw away her pots and pans," as Twa said, how could she go on a macrobiotic diet? And if the friend were on a raw diet, she would not "reek." I think perhaps there's quite a bit of confusion and false assumptions going on here.
She then decided to donate thousands of dollars to the "enrich the quacks at Hippocrates Institute fund" and undertook a macrobiotic diet.... she reeks from this inedible macrobiotic stuff ... which evidently is so horrendously bland that she has found it necessary to add garlic out the wazoo to add some semblance of flavor to it.
I posted earlier in this thread about the heartbreaking defeat of Stefanie Spielman in her cancer struggle, in spite of the "ideal" course of conventional care. I was thinking this morning about the sad case of Elizabeth Edwards. For her to have terminal metastases in her bones so soon after she was "cured" of IDC, I knew she probably had chemo and radiation without complementary care (which IMO is CRITICAL if you're going to be treated with carcinogenic therapies such as chemo and radiation). Sure enough, that's what happened...
Mrs. Edwards, 57, was first diagnosed with cancer in the final weeks of the 2004 campaign. The day after Democratic presidential nominee John Kerry and Edwards, his running mate, conceded the election to George W. Bush, Edwards announced that his wife had invasive ductal cancer, the most common type of breast cancer, and would undergo treatment.
Mrs. Edwards underwent several months of radiation and chemotherapy for the lump in her breast. Her husband's campaign said she had recovered from the illness.
Sad, sad, sad. Twa's recommended conventional treatment did anything BUT guarantee her cancer would stay away. I guess since she's still alive 5 years after her original diagnosis, she will be counted as a success for conventional medicine's statistics... even though she is now terminal.
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Twa has not posted in awhile maybe she is gone. God speed Twa!!!
Does anyone think that taking a break from all supplements for a few days and letting our system rest is a good idea? On the iodine thread I read we should take breaks from the iodine. I think it is recommended so the iodine will work better. What say you???
Patty
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MsBliss - thank you for your intelligent, well-thought out post. I tend to agree with Crunchy on this one - TWA's post didn't make sense and I question whether it is just an attempt to come in here and stomp on us. The post not only didn't make sense, but it was tragically cold and lacked a grain of compassion. How could one talk about a "friend" this way? I don't buy it.
Sea - I take breaks from my supplements at times. Some days I just can't manage all the pill swallowing. But, I get right back on track the next day. I read recently somewhere (maybe it was Life Extension - but I don't remember for sure) that you should take your supplements at least 6 days per week for maximum benefit.
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Deni, thanks good to know. I have days when I looked at all those pills and get nauseated. I guess I shouldn't complain, it can always be worse.
So happy to know that your dh is doing well. Now you both can get some needed rest. You will have to give him a big hug and tell him it is from your "breast friends"!! If my dh had that surgery he would be whining about everything. He is a big baby when it comes to pain. Oh, if he only knew!!!
Patty
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Patty - you are funny! My DH is NOT the best with pain either, and he admits he is a big baby, but in this case, I will give him the benefit of the doubt! He has been through a lot over the past couple of months so he deserves a good whine! And, I could use a good wine! But, no, I will pass on that.
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Well, you guys are doing a great job of going after the troll, so I will not make a comment to it, except to warn you that you need to be alert. This troll morphs into lots of different ID's, with the same MO so it is best just to ignore this creature, whose only purpose on this board is to cause dissent and upheaval.
So let's go back to the subject of protocol. I would add that the one thing that healed me the most and continues to give me good health, is long walks. I started walking the day after dx and have not stopped since, through all kinds of weather. Walking helps to clear the head ,and breathing in all that fresh air, and enjoying the glories of mother nature, gets the endorphins flowing, which are essential to good health. We have to heal ourselves totally, mind, body, and soul. It was through my walks that I was able to come to terms with all those cancerous thoughts that were eating at me. Whenever someone gets me upset, I just head out for a trek and soon I forget about everything except how great it is to be alive. I have a special tree that I pass on my walk. She is very very old, I can tell, by her girth. I first saw her standing there in the dead of winter, and I saw how bare she was, and old, and knarly, and yet she stood so strong and proud. Winter's chemo had left her branches bare. She had scars everywhere from the ravages of time, yet she perservered, just the little ducks who frantically raced up and down the small part of the nearby river that was not frozen, trying to survive. They gave me such strength. I decided I would circle my tree, everytime I passed her, and this year, I circle her twice, celebrating, my two years of surviving. I will keep adding a year every november, when my surgery took place, as a thanks to mother nature and to God for the amazing ability that all living creatures have to survive the worst of turmoils. I walk with the conviction that every step I take forward, is one step farther away I take from cancer. I think it is one of the foremost reasons I am now happier and healthier than I ever was before bc.
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Amen to the ritual of walking, vivre. I've been walking consistently four years now. I started after radiation treatments. I'll never forget that piece of paper I had to sign, acknowledging the side effects of treatments, which include higher risk of heart disease and heart attack. And even though I'm still complaining of fatigue today, it's a mere shadow of the fatigue I had after rads. If I sat around all day, I'd feel ok, but as soon as I'd try to do much of anything, I'd feel sick to my stomach, and I'd get so tired that my bones would literally hurt. Plus, I felt like a bag of rocks was sitting on my heart.
I was paranoid of getting heart disease, so I started walking. I love to walk, and my favorite is walking on the beach. I can get to one with a 30 minute drive. Then last week I went kayaking on a spectacularly beautiful day. It's in moments like that I feel joyfully alive and grateful to find beauty in each day.
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Okay, althea, now you made me really jealous! I love to walk on the beach too. Wish I could do that. I have been to a couple of places in the gulf and it really is wonderful. I have never tried kayaking, but have thought i would love to give it a try. I am just so paranoid of it turning over. Has that ever happened to you?
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Well c'mon down and visit me vivre! I'd love to meet you in person. My kayaking experience is very limited, but I've managed to stay in the kayak without any upsets.
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I agree that exercise is as important as anything else we do for ourselves, and since finishing rads, I've gotten pretty serious about walking. Not only does it give us toning, deep breathing and emotional benefits, but if you do it consistently, along with a healthy diet, you will be amazed at how quickly any excess (estrogen producing) body fat drops off. I was not overweight when I started walking in March, so losing weight was not even on my radar. I just felt crappy and lethargic after chemo and rads, and I'd read that exercise significantly cuts our risk of a recurrence. So with the support of a few wonderful women on the Motivation thread, I dug out my running shoes and started walking. And surprisingly, I've lost 10 lbs. and my clothes literally hang on me now. I walk about an hour and a half most mornings, which at my pace is around 4.5 to 5 miles. I can't imagine not walking now; it's been an absolute life and sanity saver.
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Viv - your walking email is so inspiring. There is an old tree in someone's backyard not far from my house that reminds me of the tree you speak of. She is so beautiful and graceful. Her base is thick and she's got several thick trunks that are low to the ground making her a great climbing tree. Everytime I pass that house, I strain my neck to be sure I get a look at her.
I have been walking 4-5 days a week too. It feels so great when I do. I typically am not fond of the cold, but I have been walking outside whenever I can to get the fresh air. And, I have to say I have a new appreciation for the crisp air. If I am wearing the right attire, it actually feels great to suck it in. As Deanna said, the walking saves my sanity. It relieves so much stress. And, the reduction of risk of 50% is a true motivator!
Deanna - how great for you walking 1 1/2 hours per day! I wish I had the time. My 45 minutes 4-5 days per week can be a challenge - but I make sure I squeeze that in!
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deni, you are so right about getting in the exercise is a challenge. If I can't get a walk in I jump on my rebounder. I to love to walk and my lab loves it even more! You guys talking about those trees makes me think of Pocahontas!!! I want a tree!!!
Love to all, Patty
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Here is another thought about my tree that really hit home with me. As a woman, going through menopause, I began to feel invisible. You know how you get all the attention as a perky, pretty young thing and then it is like you do not exist as you get older, especially for those of us who had gained the menopause pounds. Well I had walked past this giant tree dozens of times and never even noticed she was there. She had stood by that river, strong and proud, and full of life's experiences, but she was totally invisible. In fact, right behind her was a huge bell tower that was put up for the millenium. She was dwarfted by it. The new young thing got all the attention. People flock to the tower, and barely notice the old lady standing next to it. The fact that I finally noticed her, gave me a thought that I was finally starting to come back to life. I was noticing the world around me again instead of just looking inward. I saw her standing there, softening the hard angles of the modern bell tower with her arms outreached, ready to embrace anyone who came near her. So I walked over to her, and started doing some standing pushups, as was my custom on my walks. I thought maybe I could feel her strength. And when I put my hands on her torso, I looked at where my hands had landed. I had put them on two humps that looked like two breasts! The tree was like me! And her breasts were scared and disfigured, but still she stood there naked and proud and I knew I would survive too. I started to cry of course. So you can see why I pay homage to this great lady. Without a single word, she nursed me back to health. Without a single touch I felt her hugs. While standing there in January, in freezing weather, I felt her warm strength. I knew that we were not just survivors, we were thrivers, even with all our scars and horrible experiences
. I no longer feel invisible. If people do not notice me, I just speak a little louder until they do. LOL
I sure hope you all can come to my prevention convention and meet my lady by the river. She can use all our hugs, and you will revel in the strength she will give you.
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Viv - what a great story about your tree. I have noticed that I draw strength from things that I never did before to. This BC, as horrible as it is, changes our perspective, doesn't it. Makes us think about things that may have annoyed us before or that we didn't give much thought to. Priorities shift - for the better. There is a positive message for us to draw out of all of the stress, heartache, pain and fear. I enjoy the fresh air more. I take it in more deeply. I want to enjoy my life more than I did before (which is difficult at present but we will get back on track!)
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vivre ~ What a great story. Sounds like a page in a book I've often thought about writing -- just little vingettes of courage from bc survivors/warriors. And as a post menopausal woman, I can so relate to the invisible thing! And it's especially startling when someone totally ignores you but speaks to someone younger and prettier, especially if you're standing in the same line, like waiting for service. Grrrrrrr.... I think the only thing worse is when a geriatric hits on you --although that probably hasn't happened to you yet! Deanna
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vivre, you write and think with such poetry! I love it. When I was on a summer program during middle school, I got to "know" six magnificent, gnarly old chestnut trees on the campus where I stayed. On the last day, I felt so mournful and said my goodbyes to each of them and gave them a hug. I hadn't heard the term "tree-hugger" before but I guess it would have been appropriate! Years later, in my early 30's, I visited the campus again and found my dear old tree friends, still tall and proud and majestic. I didn't greet them with an embrace this time because I was with friends and they already thought I was nutty enough as it was!
I think the only thing worse is when a geriatric hits on you --although that probably hasn't happened to you yet!
Enh, that's nuttin'. I was already getting hit on by geriatrics in my 20's at high tech conferences. (Gotta love amoral drunk old married men!) Don't take it as an insult! They're just appreciative of a gorgeous young woman, that's all (and yes, you are YOUNG)!
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Julia-you are so funny. I guess the one good thing about getting older is we do not get hit on by dirty old men, they are still chasing the young uns. I am so glad I do not have to deal with the doddering old fools and I will be damned if I am going to let my husband become one!
As for my story, I actually am writing it down. I am trying to decide if I want to put it on my website. What I hope it will say is that there is life after cancer and it can be even better if you treat cancer as a wake up call, and not a death sentence. It took me a long time to get to the point, and that is what the story is about. And I did it all by walking. Oh, and I had the music of one artist to guide me through. But you will just have to wait for the full length version. It has always been my passion to write. I put it all aside to do the things that needed to get done. Now it is my time to follow my passion. I have lots of stories in my head. But writing sure is hard. It takes me hours to write one page because I have to rewrite so much. I sure hope I can do it.
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Vivre, your story about the tree is beautiful! Thank you for sharing that! You do write beautifully, and I would love to hear your stories. I too hope you make the time to write them down!
I have also found such healing in the presence of the outdoors and that getting outside for exercise is the best medicine I could ever have. You are all so right about how good it feels to walk! When I was in chemo, I was so tired, but I just kept walking. I tried to do two miles every day. I knew that if I just kept my body moving, I would be OK. One year after my surgery, I went to a friend's cabin up in the north woods of Minnesota. There's a small river that runs past the cabin with a waterfall just upstream. I sat in the sunshine, playing my guitar and listening to water tumbling down, and right at that moment, I finally felt like me again. Not quite the same me, but maybe a better version of me. One that understands what is really important.
Now, I'm off to get that all important sleep in the total darkness!
DeAnn
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MsBliss. Thank you for posting. I love it when people who either just know a lot about or have worked in the research field keep us abreast
of scientifically valid natural approaches to combatting this disease. I and many others thirst for this knowledge. Thank you again and keep it comin'. -
DeAnn, you are such a hippie!!!!! I love it.
I know that this horrible bc has made me appreciate things I had never thought of before. I truly love my life now. I am a better person because all of this. It is so easy now not to let the little stuff bother me. I have become much closer to God. I'm sure he is helping me to see things differently!
I still want a tree!!! Wonderful story vivre.
Love to all, Patty
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Vivre, Thank you for telling us about the tree. I cried. Actually am crying right now. The back of my house is mostly glass. About an acre back is a giant old Live Oak with huge limbs that almost touch the ground. The year that Florida got all those hurricanes, many live oaks were so soaked that they simply tipped over from their upper weight. My tree lost a couple of big limbs from the wind and is now very uneven but still beautiful. I never thought of it as a he or a she. Now, thanks to you, she is a woman. Also, thank you to all the beautiful stories about walking. I tend to do that on my treadmill watching a favorite movie, but now I see why I should take it outside since my neighborhood is beautiful and filled with wildlife. See, I learn something new and positive every day from you wonderful people!
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Hi girls. Sorry I've been away.
Too many questions to answer. I don't have any additional information on my friend anyway.
However, to those who question my statement that people who choose only alternative approaches to treating their cancer, your are correct that I misspoke. They will not have recurrence, because they never go into remission in the first place using only alternative approaches.
PoodleCruncher, Elizabeth Edwards is not a failure of conventional medicine. Had she not gone through the treatments she did, she would not be alive today. Any doctor could explain that. The fact that not every incidence of cancer can be put into long-term remission is not a failure of medicine. Not every case of any disease can be "cured." That's the nature of disease.
If alternative approaches are so good, why doesn't anyone keep track of the mortality statistics? Hmmmmm?
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