Survivors who have used only alternative treatments
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I was not being sarcastic at all. The words in my previous post are 100 percent sincere. Geez!
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Hi gang,
Lynn, that is definitely another good one! I just feel like with the number of women who get BC, these kinds of comments are just plain ignorant. And sometimes hurtful, too--I feel like telling people to stop laying their wishes to be safe themselves on my diagnosis!
I have two people in my life who went all-holistic. I won't bother to talk about what happened, but what would be great is linking to studies showing the efficacy of these treatments. How about vitamin C, anyone got info on that? I have seen a couple of articles on milk thistle (mistletoe?) out of Europe, it is a more standard procedure and what one of these women did. Anyone know where to find info on that? Treatments are available in this country.
Without knowing the above info, I fail to understand how someone would take one body of info with significant (perhaps faulty) statistical data, and then another with hardly any and just hope for the best on the notion that the former is a sham. Comparative analysis can be done up to a point here, though it will be more difficult to find the info. On this morning's google: not going so well.
The Block Center might be an interesting place to start looking, though they are blended and I doubt they would suggest a Stage 3 go all-holistic. How about a link to an all-holistic practitioner who works with BC patients, so we can start talking in the open about their methodologies, the studes, etc? Lucy88 has done a huge amount of research, I followed a lot of info from her.
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Nerida, we are honored to have a Stage IV patient here, someone who is being open and taking risks. I argued earlier in this forum that it was a bunch of Stage 1 and 2 patients cheering on WOM to go holistic at Stage 3. I'd be way more willing to listen to you with an open mind!
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I know someone who has lived over 20 years with stage IV, but she has never been NED and she has done conventional treatment the whole way. For many of those years she was stable with just tamoxifen.
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LtotheK
Mistletoe is otherwise known as Iscador and is probably best categorised as a homeopathic treatment. It is widely used in Germany, though the research is patchy and there are no definitive studies or useful conclusions to be drawn from them.It is taken either as a shot, daily, or in drop form, also daily.
I did take oral Iscador for about one year, after I had completed chemo and radiotherapy.I was on concurrent endocrine therapy.The only reason I stopped was that my health authority refused to sanction paying for me to attend the Royal Homeopathic Hospital in London, citing 'not enough evidence that homeopathy works'. Since we have socialised medicine here, you can add money into the equation.
Milk-thistle is something entirely different; it is a supplement used for helping to de-tox the liver, and which I also took after finishing chemo.
Hope that is of some help,
sam
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Iago: Thank you! If I wasn't laughing so hard at myself I'd probably be embarassed. I kept looking at those stats thinking...why are they giving me 15 year rates If I only have 7 to live. I am disapointed that I no longer have scientific data to back my up in my F it attitude. I was planning on heading to Hawaii to make grass skirts and lays for "tourists." Guess I'll have to keep plugging along here instead!
Nerida: Frankly, who cares if you're nice? Your BC is really all about you. You should be able to choose to be abrupt and even impolite if it gets you the answers you need to follow you through your treatment. I wouldn't say you need to be mean and insulting, but seriously being polite is over rated. There's this great quote about the uselessness of being polite in this wickedly dark tale, by Diane Setterfield "The Thirteenth Tale" I'll look it up and PM you...You of all people should ask questions here and you should press for details.
In regards to long term survival rates at later stages...If you get metaphysical about illness, Mind, Body, and Spirit are all connected. Therefore physical illness is the manifestation of an ailing in Mind or Spirit. I know this is touchy feely stuff, and frankly I always felt bludgeoned by church, but in the last couple years, I've met some wonderful non-conventional spiritual people. I've had some fascinating experiences through meditation. So I guess in summary, and especially to your Nerida, take this time to heal everything that ails you. I can't imagine a more personal illness than one that strikes such a personal and visible expression of being a woman. Before you hammer me I know being a woman is so much more than having breasts, but I am speaking on a somewhat superficial level of appearances and self image. I don't believe cancer is just an assault to the body, I think it hits us in an emotional and spirtual plane too. I think it's healthy to debate the merits of both alt and con tx...I think it's silly to ignore the rest of what makes a person.
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Nerida I surely hope you are able to continue to ask questions and be respected for just trying to educate yourself. We all should be able to do that even if people don't agree. In the end it is up to the individual to get all the data together and choose what is right for us.
I understand most here have no respect for alternative treatments as it has been made loud an clear though out this forum dispite it being brought about with a specifice question regarding testimony from surviviors. I understand posting stats or sharing ideas but what I do not understand is why people who hate the very idea of alternative feel the need to bully or attack others who would like to discuss this. A childish remark about the fungus thread. Seems so high school what purpose does that comment serve other than to ridicule. Why not start your own thread like the myths on alternatives. I certainly don't just into a say over 60 group as it is not my place. The saddest part about it is there there are BC people out there that are told they no longer can be treated with conventional or they might be the rare ones who can't take it to begin with and those people should be able to search for alternative methods without harrasment.
One tremendous flaw is that people ASSUME they know the whole story. I have read that WOM's onc wouldnt' reccommend TCH if she had issues.. WRONG!!! You see how everone gets so focused on me as my stage my onc is no different. She keeps stating to me the "standard of treatment".. That is her only focus. I finally had to tell her look I have A, B, C,D. and E that are concerns you are not addressing all of which have a huge impact on weather chemo would be reccommended. Why because she had a formula that told her what to do with what numbers. I had mentioned all the above but she never put them together. I had to put them to her and finally now she say OH lets make an apt and work on other options. Putting your head in one direction only can be dangerous to the patient and many on here are doing the same thing. No oneasked me what things might make chemo a bad choice in MY case. I didn't get a list of things that makes chemo not the best option, things an onc would need to know. Why will all the stats posted on here I am sure someone could provide this. I just keep getting told how horrible I am for not listening but when do you need to listen before throwing out your recommendations to someone you have not taken the time to get the history on?? I am made out to be someone who is just rejecting this great gift and that I reject conventional. I had surgery as I knew it was the right thing to do. Do you know the treatments I have had prior to this or are you going to ASSUME you know me based on my question. How will you feel if I die from treatment due to one on the side effects that will hit a pre-existing condition because I feel pressure into doing it from this board? As I said I feel the chemo will do more harm to MY body and I had all my issues in mind. Heck no one even asked what harm are you concerned with to make sure tell me to do chemo was right. Guess it was assumed that I was just out to bebuke chemo. No good doctor should do that and this laser focus on " this is the standard of care" is probably why my onc didn't question further. Because she was told she is doing what is best for all with Her2 pos 111a. But not all patients are alike...
So please before saying what I need to do despite the fact I didn't ask that question at least get your facts straight. That should be done when giving anyone advice. We don't know peoples mecial hist, perscriptions, addictions...etc There are many things to take into consideration and you could harm someone... Just because it is the standard for most does not give the lay person the right to feel the have the full knowledge. Stats or not you need to know the person.
One more thought if I am told that I can't take it and for those who can't how do you think this thread makes those people feel????????
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WOM, I can't remember if anyone recommended you get a new oncologist, but you need to get a new oncologist. You've lost trust in her and she's not listening to you and you can't receive care from her as a result. Whatever route you decide to take, you need an oncologist you can trust. Even if you have to change within the same practice or facility, if you can, you should.
Second, if you read through the last few pages you'll see that most posters are not telling you what to do. I posted, for example, that you have other health issues to consider. I really don't think its fair for you to write "how will you feel if I die from side effects?" I think most of us are not trying to argue with you anymore and haven't for a while so please try not to be so angry.
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WOM
If you would share what your issues are that could put you at higher risk from Chemo (A, B, C, D, and E), maybe some of us who like to research could look to see what is published regarding those conditions and chemo. Research takes a lot of time, why not let some of us help you?
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Seriously, WOM, we have all stopped trying to give you advice - you have chosen your path and I think everyone here is hoping for the best for you. I know I am. I chose the conventional treatment and am glad I did, but I find the "alternative success stories" very interesting. I hope you are one of them. Anyway, this thread has turned into one about alternative vs. conventional treatment, rather than about your specific choices.
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MOC I do recall you one of the few noticing the liver (just one issue) being something to check about which I applaud you for this
. Please also take into consideration at the same time I was happy to see this I also endeared pages telling me/us how strongly you feel the only chance of survival is by standard of care (this is a summary not your words I know). I had to point out my liver issues first. But thank goodness you had the sense to realize this could be a problem How ever you will see page after page of saying WOM needs chemo. Why hasn't she had it yet. I hope we can change her mind and she will wake up and do it. That I am in some sort of denial stage and aren't accepting I can die. That I need to think of my kids. Remarks that I just won't listen to real statistics on how chemo will help me live etc.. But all forget there is more to it than that. Those standards are for the majority in the studies and the stats are not 100%. We also forget they are taken from the population of the study and assume the same stats will stay consistant to that of the smaller population. I then saw Hollie told she was harming people by telling her story. Putting their lives in danger as they would die if they listened to her . I want to point out that sometimes recommending conventional could be just as dangerous if you recommend it to the wrong person which I am very much a candiate to be. This frustrates me to see so many people who feel that their opinion is so right they can attack others with no thought of the fact they too can harm someone with it. It is not 100% and if I just ran out in fear after all these posts and did the treatment it could harm me. Had they just stopped for a second rather than be on a misson to prove their rightness they might have been able to ask such questions. That data is just as important before suggesting chemo/rad and tamox.
My heart breaks too as I think of a nice woman I met who took the first round of chemo and had a toxic side effect. They kept her from everyone for 4 days, she got very ill and was told she would not be able to do chemo. So 1 round was it. I picture her reading this and how horrible it would make her feel for her chances of survival. People get so determined on proving a point they forget that things just can't work for everyone like it works for you. Lets poo poo all alternative treatment but what do you tell the person who can't use it? A huge reason we need to look at more than one method as each life is important not just the ones that fit the majority..
I went to a second opion as I stated and was told "all doctors here at ****** will recommend the same thing as it is standard of care". She didn't even want to listen so I left in tears and told her I wish the other one would have just told me that as I wouldn't have wasted my time. The idea that only the standard of care is acceptable can be very harmful. Not all doctors are quality doctors and when the majority push this idea down peoples throats (and doctors) it can lead to bad consequences. I am also a unique case of YEARS of heavy toxic exposure. Are they prepared to take this into or educated to take this into consideration? Are their stats on chemo in the people of toxic towns. Like Hanford? Or do we blindly treat these people the same. Grouping us all into one mass is very dangerous and we see it all the time through side effects.
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I'm sorry you didn't like my "Fungal" comment. It's just that you reminded me of the originator of that thread. You might find some info on that thread that is helpful in your situation. I myself had to forego chemo because of Parkinson's Disease. My cancer was not very aggressive though. I had radiation and Tamoxifen, then had my ovaries removed a year later and switched to Arimidex. I made my decision and have never looked back.
Good luck.
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I want to point out that sometimes recommending conventional could be just as dangerous if you recommend it to the wrong person which I am very much a candiate to be.
Perhaps, but from my experience with MDs, they don't go around handing out chemotherapy willy nilly. I am not saying there is not room for improvement in cancer treatment, but I do think there are some standards used by oncologists when they prescribe chemotherapy. I don't know what your health problems are, but going alternative if that means going without some plan that includes some proven therapies may be dangerous too. Just curious, what toxins were you exposed to? I have lots of cancer in my family (everyone already knows my mother died of bc, my father had 5 primaries culminating in the final one: lymphoma that went completely untreated. There's a lot more, but I won't get into it.) I assume some had an environmental component, but I don't see how that would preclude treatment once a person is actually diagnosed with cancer. At that point it seems like the focus would shift to treating the disease. Do you have a primary care physician? I don't know what your insurance situation is like, but if your insurance doesn't cover a second consult with an oncologist, why not pay out of pocket? As far as chemo side effects, some people do have bad side effects, some people have mild side effects, and some people have very few. Generally the oncologist monitors the patient, blood tests etc during the process.
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WOM
TCH Chemo doesn't typically affect your liver. Here is a list of toxicities of the large BCIRG 006 trial from the TCH arm (numbers are % of patients who experienced that side effect to a significant degree:
Arthralgia 1.4
myalgia 1.4
fatigue 7.2
stomatitis 1.4
diarrhea 5.4
nausea 4.8
vomiting 3.5
irregular menses 26.5
neuropathy - sensory 36.1
neuropathy motor 4.2
nail changes 28.7
renal failure 0.1
creatinine 0.1
Grade 3/4 homotolgic toxicities:
neutropenia 66.2
leucopenia 48.4
febrile neutropenia 11.2
anemia 5.8
thrombocytopenia 6.1.
They treat the hemotalogical toxicities with neulasta, so this typically is not a big problem (except for the aches from the neulasta).
Liver issues don't typically occur.
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WOM - you never chose to share your "health" issues with us - you could have easily done so. Poptart is correct - any doctor would take any existing issues into account before treatment.0
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WOM, I wonder if you live near one of those superfund sites, like Hanford? You mentioned that a lot of people around you have cancer. When you say years of heavy toxic exposure, I am wondering what you were exposed to.
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WOM, you said you were concerned about people who can't handle conventional treatments...that they might get upset by what they read here. I think the difference is if someone tries a treatment their doc offers, and can't handle it, there are typically other alternatives. Other chemos, or other anti-hormonals, or even non-medicine-based approaches (like ovary removal) can also address the problem. I'm more worried about those people who reject all treatment their doc offers, especially in favor of unproven approaches.
It's important to keep in mind that in most trials of medications/anti-hormonals/whathaveyou many of the participants do not complete the treatment. Some have to quit chemo early, or can't tolerate the anti-hormonals, or just decide to stop. Yet the results of such trials are still typically pretty good.
I think it's more about the approach -- are you willing to try the medications and treatments that have been shown to help many similar breast cancer patients, or are you essentially letting nature take its course (whatever that might be.)
Nerida, there is always hope. Though I probably come across as a numbers-based and science-driven person, I also know that for every generality, there are those who don't fit. For every rule, there's an exception. And...the truth is stranger than fiction. Stuff happens in the world that not only don't we understand, but we would never believe possible. That's why I was sincere in saying I'd like to hear about breast cancer patients who have spontaneous regression/remission. I have no doubt that there's someone out there that it happened to.
I think if it were me though, I would still be trying things with a proven track record, rather than thinking I would be that lucky outlier. I just don't have a strong belief that I'm a lucky person (maybe I thought that before I got BC at 35, but not anymore!)
In any case, I hope your scans go really well and that whatever you do try works for you for a very, very long time. How cool is the thread here about 10+ year Stage 4 survivors. They are coming out of the woodwork. I think you will be one of them.
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Suspen I did not share my issues as my questions was not one of what should I do but are there any survivors who did all alternative. Those with strong opinoins took it upon themselves to start rattling off what I needed to do page after page without ever thinking of that. To which I am pointing out they should keep in mind chemo is not for everyone and there are health concerns to take into consideration.
TCH does come with the heart issues as we all know which lucky for me is a concern. I am explaining myself trying to be nice but this is my personal life and I should not have to justify and publically tell all my heath issues to appease others in my choice. But I will to help others as people on here should be respectful that people have different things impacting their lives. As you see one such person also had issues and shouldn't fear asking questions for alternative help. Even if is is just because you plain don't agree with SOC they should be allowed to discuss this with other people of the same mind without having people step in and say how awful or what ever word you would like to call it. It would be the same as if a group of natural survivors jumped in chemo groups and started ranting about what they feel chemo will do. It is just inappropriate and inconsiderate. And believe me they would feel they are protecting your life just as the person pushing SOC feels. So that doesn't justify why you are here. Maybe one post but multiple is just being on a mission to fight that your right and they are wrong.
Suepen I don't know if I am just reading into your post wrong but they are coming off very short and abrupt. At times I am just very offened by them and am hoping this is a misunderstanding. You say poptart is right but I am baffled at how you are to disscuss what my onc would do when you don't even know who I have? That might be what should take place but it isn't what happened. She wanted to give me my instructions and I was to do as I was told. She never even suggested a liver test if for nothing else to ease my concerns. She didn't even ask me further to find out what it was dispite me stating this concern several times. I would have had more respect for her had she taken the time to discuss the liver concerns with me.
The heavy toxic exposure I would have to find out via the company letting us know. But my mom has leukemia which by the way is what my onc said it is the only cancer that is studied to be caused by chemo and that they have gotten that down to 2%. Which wouldn't concern me to much but it is much more alarming if your mom has it. Both our doges died of cancer. I have spoken to a few neighbors who have had rare cancers and their pets died to of cancer. They leveled my school which was right down the street from my house due to how sick people were getting. It stays vacant. Each time I would go to school for the last two years I would get violently ill and be sent home. I was barely able to attend. I am assuming it took a while for it to creep up as it took a couple of years . If I would stay indoors I would get better. I did fare better when I went to schools that were father away but again I lived up the street. Everyone from this town I reconnect with says the same things everyone has cancer. We didn't know what it was then but the refinery had to fund the move and leave the land empty. If that isn't a clue..lol Or maybe they days the had large clouds and told to stay indoorsmight have been a clue..lol
I had a lawyer suggest going after them. I have enough on my plate now. What is a superfund sites?
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WOM - you are definitely reading more into these posts than what we have said. No one has been horrible to you. We all care about you and your family. Sometimes my posts are short and to the point - I'm a straight forward person and often don't have much time to write epics. I had HER2+ve bc and I know how serious it is - even for Stage 1. I've been terribly worried about you and now am starting to wonder why I bothered.0
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WOM
As part of normal chemo regimen, patients are given a battery of blood tests before every dose. The basic blood tests include liver function so your doc would know if something were off before each infusion. You could always ask to see the results before each infusion.
Also, heart issues are almost never a problem with TCH, its AC TH that sometimes causes heart issues and even these are typically reversible.
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If interested, I can point you to specific study results that demonstrate what I said above is correct. Let me know.
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WOM: Superfund is a government program that cleans up hazardous, contaminated sites like Hanford. When you mentioned Hanford, I thought maybe you lived nearby. They used to produce plutonium there and now soil and water around there is contaminated with heavy metals. But you mentioned a refinery.
I can understand your concern about leukemia, since your mom has it you may be at higher risk and chemo would add to that risk . . . you have to balance that risk with the risk of your breast cancer progressing, which is greater?
Nerida: The way I see it, if you can survive several years with stage 4, perhaps during that time they will discover a cure. I like to think about what happened to Lance Armstrong, he was stage 4 and now he is cured. I don't see why the same can't happen for those of us with BC.
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For future readers: there are statistics available to analyze your risks from chemo based on health status.
General risk of serious SEs from chemo with an otherwise healthy patient: 3 - 5%.
Chances of fatal return of cancer at Stage 2+: at least 5x that.
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I think there are many people with cancer who believe they developed it because of exposure to specific toxins. I know two. The first is a man who worked with nuclear energy when he was young and developed a form of leukemia that no one had previously survived, a particular mutation. He pursued some very aggressive, experimental treatments that included a bone marrow transplant and some serious chemo and he is alive and well 12 years later. The second is the child of a friend who developed leukemia and, they later learned, they lived in any area that had been a toxic waste dump. The child had an extremely aggressive form of leukemia and was given a poor chance of surviving. Her parents pursued a very aggressive treatment protocol including, again, bone marrow transplant and lots of chemo. Its been 13 years and she is also alive and well and is a very successful student.
I tell you these stories because these are people who developed cancer because of toxins and still did chemo and mainstream medicine, successfully. The former does not preclude the latter. If your doctors are recommending a treatment protocol they believe your body can tolerate it and the odds are it can.
And please don't think I am attacking you by pointing this out. I'm not. I just think it is useful information.
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There is a woman from England who posted on the mistletoe treatment. There are alternatives to pursue--I would get going on those quickly. Florida is one location where you can get that treatment.
Taxol is a derivative of the yew tree. Anything in enough concentration, from mistletoe to Tax, to attack cancer is a medicine. In a way, I'm unwilling to call them alternative treatments, rather, untested or uninvestigated. The real alternative will be a cure for cancer without supplements, herbs, or excessive doses that invariably throw off other bodily systems.
Even in the world of "alternative" care--we ain't there yet.
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"It would be the same as if a group of natural survivors jumped in chemo groups and started ranting about what they feel chemo will do. It is just inappropriate and inconsiderate."
This is a public forum. If anyone desires this level of privacy, this is not the venue. Try a locked blog, for instance.
WOM, none of this ever has been with anything but respect to you. Part of respect is taking the risk to disagree.
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I have a serious question about this whole thread and what "natural" means. WOM, you make the statement "It would be the same as if a group of natural survivors jumped in chemo groups and started ranting about what they feel chemo will do. It is just inappropriate and inconsiderate."
And then a couple of posts earlier, Beeb75 says "letting nature take its course (whatever that might be.)"
So what is this natural? How do we define it and is it defined differently by different people? What makes a "natural" girl and what makes an "unnatural" girl? What therapies are "natural" enough and what doesn't fit the definition? When does a "natural" component of therapy become "unnatural?"
I ask this because I see so much caught up in this word "natural," like being "natural" is somehow more pure, more "right" for the body? But what is it?
I ask this not out of spite, but it's a really serious question.
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"It would be the same as if a group of natural survivors jumped in chemo groups and started ranting about what they feel chemo will do. It is just inappropriate and inconsiderate."
That sentiment is repeated SO often here in this forum, and it's just not the case. "Ranting," judging, and fearmongering aren't necessarily appropriate or helpful, but if you go to any of the chemo threads, you'll see LOTS of discussions about numbers, statistics, side effects, etc about chemo. Seriously, what's wrong with DISCUSSING facts, both pro- and con?
WOM -You keep expressing indignation about people posting the "wrong" things on your thread, but then you yourself seem to be all over the place topic-wise. You asked, "I am just curious if there are surviors out there who have chosen to refuse the suggested Chemo and radiation treatments." Did you get your answer to that question? If not, or if you have other questions, maybe if you try again to ask direct and specific questions, we can try to offer more helpful suggestions. You can twist it however you want, but the fact is you put out some information about your situation, and I think all of us are concerned about you and want you to have accurate information. You have to make your own treatment choices, but please consider that most, if not all, advice here is given in good faith because we care. It would be a huge disservice to you (general you) and future readers if everyone simply posted "attaboys" for whatever treatment advice/choices someone makes, no matter how far-fetched, misguided, or just plain wrong. That's the value and the benefit of coming here, in public, to get information.
Digger- Great question about the term "natural." I sometimes wander over to the "natural girls" thread and just shake my head about what some people consider to be "natural." Yowza.
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...and why on earth is it considered heresy here to disagree and/or provide facts that a particular "alternative" treatment is ineffective or potentially dangerous?
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In fact the hormonal section is mostly ranting about side effects. Its certainly not inappropriate to do so. The lymphedema section could be seen as entirely dedicated to a side effect. And yet women on these threads are supportive of each other. If someone posts that they had a really tough time on Arimidex, I don't take it as a personal criticism because I am currently taking arimidex. And if someone posts that they are about to start tamoxifen and are scared of the side effects, they don't feel they are being attacked when I post that I did all five years on tamoxifen and tolerated it just fine. Usually they are grateful.
Its as if those who pursue alternative approaches (as opposed to complimentary) are so ideologically bound up with their choices that they see any discussion of the downsides as a criticism of their very being. Most of the rest of us, whatever approach we choose, take in the give and take. I know I would never dismiss the side effects reported by women on AIs, even if I'm not having them.
There was a woman here a few years ago who had multiple health problems and couldn't do chemo -- her doctors agreed -- even though she had a relatively advanced case of bc. She pursued alt treatments because it was all she had, but she never, ever criticized chemo or thewomen who chose to pursue it.
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