Survivors who have used only alternative treatments
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Thinking about this...I can feel for the people who look at the side-effects of chemo, hormonals and whatnot and THEN coupling it with the (minority) of cases where the traditional treatments were futile.
It's so very, very demoralizing for someone to go through chemo and hormonals and the whole kitchen sink and endure the side effects and cost and...progression, progression, progression as if there were no treatment at all. It sucks, to put it very mildly, and is horrible to watch.
It's so easy to blame someone - the doctors, the patient, God, karma, bad thoughts - for these worst cases. And honestly - as someone for whom chemo and hormonals and complementary therapy HAS worked so far, even if I do pop up Stage IV it has bought me four years! - words are inadequate to express how awful that is to be someone who isn't helped one little bit by what we currently have available.
But for the vast majority of people treatments DO at least buy them precious time. A year spent NED with the help of chemo (or milk thistle or...) is a precious year that this person might not have had without the treatment, and a year is better than the alternative, I think we can agree on that! A year to see one's kid graduated from college or to hold one's first grandchild or go to Hawaii is a precious year.
I think the extremes are dangerous - both extremes. "Chemo is a magical cure-all" vs. "chemo is useless." "Complementary treatments are a total waste of money and time" vs. "complementary treatments are all I need." I myself try to be optimistic and yet realistic. I'd rather assume that chemo works than not. I'd rather live as if my complementary therapies are helping me. I'd rather assume that my side-effects are a way-station on the road to health. Again, speaking as someone who HAS gotten her life back, who COULD push through fatigue and brainfog and feeling crummy, and who thinks the phrases "I can't," "There is no hope," and "Suck it up" are not allowed in my lexicon. I prefer a can-do approach, and complementary remedies are part of my can-do approach.
Apple, your story is one of the most thought-provoking and heartrending I've seen. And your paintings are beautiful, as is your family.
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I agree with everything everyone has said to you, Apple. There's beauty everywhere in your life.
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There seems to be some confusion between numbers and percentages, between what can be opinion and what is a fact, and also between terms such as recurrence, overall survival, disease-free survival, etc.... and the waters are being seriously muddied.
So here is some terminology. It's surprisingly difficult to find, so it is no wonder that there is confusion. Hope this helps:
Prevalence rate: In epidemiology, the prevalence of a disease in a statistical population is defined as the total number of cases of the disease in the population at a given time, or the total number of cases in the population, divided by the number of individuals in the population. It is used as an estimate of how common a condition is within a population over a certain period of time.
Source: Wikipedia (http://en.wikipedia.org/wiki/Prevalence_rate)
OVERALL SURVIVAL The time interval from the start of treatment to death is a more objective measure of clinical benefit than progression-free survival.
DISEASE-FREE SURVIVAL Continued survival in the absence of recurrent or new malignancy.
PROGRESSION-FREE SURVIVAL The time interval from the start of treatment to disease progression. It is a measure of the clinical benefit from therapy.
Source: The journal Nature ( http://www.nature.com/nrc/journal/v3/n7/glossary/nrc1123_glossary.html)
This goes to the definition of the difference between a raw number and a rate (or amounts versus percentages):
prevalence rate: the proportion of a population that has a particular disease, injury, other health condition, or attribute at a specified point in time (point prevalence) or during a specified period (period prevalence).
prevalence, period: the amount of a particular disease, chronic condition, or type of injury present among a population at any time during a particular period.Source: The Centers for Disease Control and Prevention: http://www.cdc.gov/excite/library/glossary.htm#P
Data can certainly be manipulated into statistics that are misleading. However, the data itself is what it is - it is a fact. You can't decide which data is more representative (unless you want a roomful of mathematicians, statisticians and clinicians laughing at you).
Now, I will close with some opinion: I detest, loathe and abhor the lack of progress we have made in the war against cancer over the past several decades. I would love nothing more than for the truth to be that treatments have caused a significant (and here I use the term "significant" in the way we laypeople understand it - not in the way statisticians use it which is very different) decline in death rates. As a cancer patient, nothing would make me happier. I wish to God that raw numbers or prevalence rates were an accurate assessment of death rates from cancer. I also wish to God that early detection really did save lives in BC and that mammograms saved lives in a statistically significant way. They are not, they don't and I hate that!
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Crystal Cat: speaking to the emotional side of this debate now, I completely agree with you about the benefits of extending life. Reading the stage IV forum has really opened my eyes to the fact that life prolongation is meaningful. You will not survive, and the treatments will not change your outcome, but you just may have the chance to do something significant, to experience great happiness, pursue goals and enjoy life generally. In other words, to do everything you could have done without a single cancer cell in your body. There is everything to be said for that. It also appears that most people can tolerate SEs more than what they probably could many years ago, when chemo was given in the hospital and/or the Halstead mastectomy was the golden rule. But I will qualify that last bit and say it is just my impression. I am not familiar with the data on this.
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Mollyann-
Your obsession with lago is bizarre. I would guess you are on BC.org as much as she is, to be able to stalk her as you seem to have. I agree with konakat. It's possible you need some help.
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Bless your sweet hearts for caring about me. I love you all too.
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Konakat, well said. I've noticed the same thing. Spouting negativity and sarcasm on a breast cancer support board is simply rank. And creepy too.
3600 posts in 8 months is average. Chat, email, texting, blog posting - it's how people stay connected and some people are more adept at it than others. I probably send out b/w 40-50 text messages to friends/family on google chat per day plus a bunch of personal and work emails, which is less than the daily average. Chat and blog - it's what people do.
Lago, post and post often. Without consistent and supportive voices - like yours - the newbies that come to this board would be lost.
Apple, your children are beautiful. May you have many/many/many more years with them.
Wornoutmom, these are difficult decisions. My approach was to throw everything at it. I'm in my thirities, have a very strong family history and feel my early diagnosis and low grade tumor were a fluke and don't want to risk a recurrence. But it really boils down to your personal risk tolerance. Wishing you the best.
J
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Apple, your thoughts and words blew me away. May your music continue...
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I really appreciate the exchange of views and wish I could have read such a discussion when I was trying to decide on treatments. It would have given me some real data and ideas instead of the extremes and biases that both camps seemed to promote on and off the internet, professional and amateur. I'm one of those people who can usually see both sides of an argument which makes it hard to make a decision.
Now on this thread in particular I can see where the statistics can be read so many different ways so that helps me investigate further and form my own opinions. I hope this thread can be referred to by anyone in the future who is struggling with the decision of which adjuvant therapies to use or reject.
I so much admire the people in all camps who are prepared to read and think about the many implications of different courses of action, studies and data and are brave enough to put their views out for scrutiny. Thanks to all of you.
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My former onc (now retired) probably has more data in his practice than 8 years. He has been prescribing AIs at least 13 years. I exercise with that 13 year veteran femara patient of his. She has absolutely no side effects! Another woman in my exercise group has been on hormonals for 12 years. The teacher of our class is 68 years old, super fit and a 12 year veteran of bc. I don't know if she still takes anything. I am 3 years NED and on femara for the same amount of time. it would be interesting to see a study on the combination of exercise and AIs on survival.
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I doubt that we will ever reach a consensus on the matter, but perhaps if we look at things logistically instead of analytically, because we could argue percentages and statistics until the cows come home. Every study will give us different stats based on each studies protocol, so why bother. I have also noticed that many women use the words recurrance and metastasis interchangeably, and they are definitely two separate events so we should probably clear that up first. Just for the sake of argument, I'm going to base all of this on my own situation. In 1996, I was diagnosed Stage IIIb, triple positive, with a "highly" aggressive tumor. I had just given birth to my second child so was not in a great state of mind to be making decisions and quite frankly, I was willing to accept anything the oncologist told me. I thought life was over for me at that point, so I was too depressed to care what happened next. Out of shear desperation I went along with the standard treatments recommended to me. At that time the surgeon asked me how I would like to proceed....lumpectomy and radiation or a mastectomy, making it very clear that there would be absolutely no difference in recurrance or overall survival, with either one. I chose a lumpectomy. Upon meeting with the oncologist for treatment, my options were radiation, chemotherapy and hormonal therapy. Using all three would give me the best chance at preventing a "recurrance"., so that is what I chose. I did finish the recommended radiation. After being unable to stop vomiting after three treatments of ACF, I stopped. It was way too disturbing to my children to see me vomiting my face of on a daily basis.I was then placed on tamoxifen and three months in, was so debilitated I had to give up a home I loved and move into one that didn't have stairs. My oncologist was in a bind as to what to do with me at that point so he and I decided we would stop everything and just keep an eye on things. After all, there would be no guarantee that it would not metastisize, even with conventional treatment. The fact that overall survival was what it was had the biggest impact on my decision, and I pursued "alternatives". I thought of it this way. Every woman has a different physiological/metabolic makeup (I.e., hormone, sugar, enzyme, protein levels, etc. and the way they are individually processed). What we also have to keep in mind, I think, is that just because a scan or test doesn't pick something up, doesn't mean it's not there, so for all intents and purposes, I could very well have been weeks away from a Stage IV upon initial diagnosis...I'll never truly know and neither will the oncologists. Having said that, what we all know is that anyone can go from a Stage 1, 2, or 3 to a 4 in a blink of an eye, regardless of treatment choices. Yes, there are many drugs that can be effective. Sometimes they work to reduce or eliminate tumours (keeping in mind, again, what can be seen on scans), sometimes they don't. It really is a crap-shoot and I think oncologists will be the first to tell you that. It might also be worth mentioning that yes, there are many drugs available in their arsenal, but they are grouped. If one out of the group fails, so will the others. This applies to both chemos and hormonals, so there aren't as many to choose from as some might think. So now let's fast forward to 2006 when I received my mets diagnosis and was again faced with more treatment choices. Would getting treatment change my overall survival? No, but if it worked, it would certainly reduce my tumor load (again, that could be seen) and make my life more manageable (I.e. reducing the size of the tumor wrapped around my throat so I wouldn't choke to death, reducing the size of tumor in my sternum so it wouldn't press on my heart....that kind of thing).,Will I live longer because of it? No, the median survival rate does not change. Some will live 5 or 6 or more years with mets, some will live l or 2, again all depending on our bodies physiology. What I found interesting was the last time I looked at my chart, it said I was to get "Herceptin until progression is noted." , which upon quizzing my onc, he had to fess up and admit that Herceptin is far from a miracle. Cancer in one form or another (again whether it can be seen on the scan or not, will be there) and once it's seen growing, Herceptin would be stopped, and it was. The point is, when you've done all you can with what's available and still reach that horrible metastatic stage where your life is an hourglass, that's when survival , with all it's fancy percentages and statistics mean absolutely nothing and survival is calculated in weeks....not months or years. In the grand scheme of things living 96 weeks without treatment or 120 weeks with treatment doesn't sound so good. That's why we (or maybe just I) turn to "alternatives", and perhaps why some get a little defensive and b*tchy when those "alternatives" are slammed. As you can see I did quite well with minimal treatment upon my initial diagnosis. Ten years of survival based on the agressiveness of my disease, and not finishing with standard treatment, was unheard of at my clinic. I think "alternative" treatments gave me those ten wonderful years to watch my children grow.I am not naive enough to think standard treatment is going to save me now, so am again using "alternative" treatments. We'll see what happens. Other than debilitating side-effects from the tamoxifen in 1996, I feel what I'm doing now is certainly helping, not hurting and I have nothing left to lose.
And apple, may I just say that your post has moved me in a way I thought nothing ever could on a discussion board. It was like looking in a mirror. I too, am the glue that holds my family together and those daily thoughts of who is going to help my kids out when I'm gone is, well, horrific to say the least. Stuff the worst nightmares are made of. The stupidest stuff, like who is going to wipe out the disgusting microwave and remind them to eat and drink if I don't do it....to who are my kids going to go to when they need to talk. "Mom" has always been the one to make it o.k. and seeing the looks one their faces everyday, knowing what they're thinking, is just too much to handle sometimes. My very best to you...and I mean that sincerely.
Edited to add: I'm not out to change anyone's mind about conventonial treatments, I just wanted to make some of you aware that when you're out of options, alternative treatments is all one has left. To dismiss them and call them out as a joke, is pretty insulting sometimes.
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Gracie, I really enjoyed reading your post and apart from being sorry that you are bloody well stage IV, I am happy that you are carving your own path in a realistic, science based way (I say that because of your full awareness regarding conventional treatment) but with a plan that works for YOU. Godspeed.
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Well said gracie.
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mollyann and designermom, lago has a link to a youtube video in her sig line. Might want to watch it, helps to understand how she has the energy to post so much in her *time* on these boards.
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ferretmom- I am actually thrilled and impressed with how much energy lago has and frequently talk to her on many threads. I certainly wasn't being critical.
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I don't post much, but am on this site a lot. I find Lago's posts to be very helpful and informative. I, too have noticed how Mollyann seems to be stalking her. Lago- please continue to post! And Mollyann, please stop badgering her. We are all on to you, and you are just making yourself look ridiculous.
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Heidihill.....that work is being done by Melinda Irwin at Yale. There is a video about the benefits of exercising throughout treatment and thereafter. The study is to see how exercising affects joint issues from AIs which is a major reason women abandon hormonal therapy.
I am sure they will ultimately look at survival, as they will have this data.
The two groups in this study are:
- AIs plus a specified amount of exercise
- AIs only
Having completed all the recommended protocol (other than anastrazole which I intend to take for the full 5 years), my question was "what else can I do for myself"? So the three things I am doing are exercise (I did 12 miles of x-country skiing both weekend days, plus I do something every day), weight management, and aspirin appears to reduce our risk of recurrence (either local or distant) as well as protect our heart.
I consider exercise to be part of my ongoing treatment for remaining cancer-free. BTW - from my reading, the required therapeutic dose is three hours of walking per week. - Claire
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I think of my exercise as a an anti-cancer weapon too. Stopping smoking (which I did 23 months ago - yey!), Vitamin D3, sleeping only at night and normally, and exercise are my four main complementary therapies. Second-tier measures are drinking filtered water only and buying only organic dairy products. The only conventional one I am on at the moment is Zometa, as I had to stop Tamoxifen and Lupron.
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Athena1,
Didn't you post a study on aspirin as a preventive of recurrence? Or am I thinking of someone else? It was supposed to keep the cancer cells from clumping together or something?
Edited to add: I'm sorry, I should just look it up myself.
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No problem -- actually, it wasn't I who posted it, but I was going to ask about that myself.
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The work is the team led by Michelle Holmes, and came out a year ago. If you do a search on both, you will find it. It was published in JAMA.
It was an observational study from the Nurse's Health Initiative. It doesn't give any information as to an appropriate dose. I talked about this with my oncologist a year ago. He thought it would be one regular one daily. But that was his opinion, and not everyone agrees.
And not if you are currently doing chemo. I waited until three weeks past final Taxol.
Also there are risks in taking aspirin, but I tolerate it well. Not everyone does.
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There's a British study as well on aspirin and breast cancer, and the women in that study were taking the aspirin for cardiovascular reasons, 75mg daily.
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Please take the time to do your own research, and not from sites that say,"studies show" with no actual studies done by scientists!!!! I would have the chemo. You are too young to take a chance with your life now. Lots of women survive this, and you will too. If you go into menopause then you can take an AI, not tamoxifen. Check out my new bc friend in blog land---her name is Nikki and she has a blog called CatsNotCancer. You guys are the same age.Check out cancermath.net and check out survival rates with and without treatment. I wish you the best.
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LOVE IT LAGO!!!! The house named Mollyann isn't as pretty as you are.
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There was also a study with Heparin (the blood thinning drug) that showed increased survival. They discovered it by accident. I wonder if that is the same principle at work as the aspirin or is the mechanism of action anti-inflammatory? I ask this because MD Anderson Center was using a COX 2 inhibitor for inflammation for breast cancer patients. Either way, aspirin is good news.
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Hay Lago.. don't feel bad about so many posts. I have 20,000 or so at Piano World.
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My surgeon mentioned aspirin to me at my last check up. But then she said, "be sure it's not manufactured in China."
Okay, I have my generic enteric-aspirin bottle in front of me. It says, distributed by CVS, Woonsocket, RI. I'm guessing this could still be manufactured in China, right?
And even if it's manufactured here in the US, the raw materials could be from China, right? Unless anybody has a solution to getting non Chinese aspirin, I'm going to take my chances with the generic.
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Lucy, I wondered the same thing, after recently shopping for aspirin. And I don't get how so many distributors can show only that -- where it's distributed -- not the country of origin. I actually chose the "coated" (not enteric coated) product from CVS because it was the first one I found that said (on the box, which I've already tossed out) something like "manufactured and distributed by" with an address in RI. But now I'm wondering if it can even be "manufactured by" a US company if their facility is in China, with no mention of that! We can be so misled and taken by this kind of ridiculousness.
Lucy, I've also been wanting to ask you about the study group you've mentioned in the past. Are you all bc survivors? I'd be interested in knowing more, either here or in a PM. Deanna
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CVS is based in RI. Walgreens is based in IL.
apple I don't feel bad about my post count. Just waiting for someone to do a word count on my posts
I think many others make me an amateur when it comes to word count. Hey apple, apple, hey , apple, hey apple. Sorry but this video still cracks me up.
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