Survivors who have used only alternative treatments
Comments
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Iago,
Please read up on congestive heart failure before posting claims that it "goes away." You are spreading very dangerous falsehoods.
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mathteacher I did. Long term congestive heart failure can't be reversed but in the cases of CHF from herceptin it can if monitored and the drug is stopped when heart function goes down.
So maybe I need to clarify. Depending on the cause of CHF it can be reversed. In the case of Herceptin induced CHF (which is what I thought we were talking about) it can be reversed in most cases but proper monitoring is important.
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I'm proof that it doesn't. Once cardiotoxicity reaches a certain point from Herceptin, the left ventricle is damaged and loses it's ability to pump at full capacity. Some of that ability may return once Herceptin is stopped, but it does not repair itself. I'm not into argueing, but that's the way it is....for me. Believe me, I wish the opposite were true, but had I known then what I know now, I wouldn't have agreed to Herceptin. Having your heart function reduced to 10% is not pretty. I received Herceptin only, not mixed with another agent. Perhaps I'm in that unfortunate 1%.
Edited to add: Herceptin had the ability to kill me just as quickly as the cancer. Maybe that's a better way to go, who knows....at least it would be quick.
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Iago-- you are a newbie who has posted advice 4100 times in seven months. I'm begging you not to keep presenting your impressions as expert facts. Please stop telling us how your husband's losing weight got rid of his CHF. This kind of pseudo- medical advice is what gives the Internet a bad name.
You are not an expert on the heart or Herceptin. Please stick to what you know.
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Mollyann....I don't know what that's about...seems a bit harsh.... but I think Lago has every right to post her experiences. I don't think anyone would take anybody's medical advice off a discussion board without checking with their doctor first....at least I'd hope so. All we can do is gather knowledge and present it to our doctors for confirmation/information.
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I agree, Iago has a right to post her experiences. I have followed her first person lymphedema accounts with interest. But posting on cardiology is way beyond her area of expertise.
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Gracie I'm sorry you have CHF but in many cases it has been reversed for those on Herceptin according to the literature. Yes is sucks to be in the 1%.CHF can't be reversed in some cases.
http://www.mayoclinicproceedings.com/content/83/2/197.full
http://www.medscape.org/viewarticle/571829_40 -
There is statistically significant overall survival improvement. I tried to post the slide, but could not. See slides 17 and 20.
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athena...that is horrible and to me, yet one more of those side effects that we are told will go away when the drug is stopped...that is not neccessarily true in many cases. Some things bounce back, others may have to corrected through a variety of treatments and others, well, the damage ir change is done to our bodies. It is all so much chemistry and as that saying goes-every action causes a reaction. Good, bad and in between.
On a slightly different note, I am so furious for second guessing myself over the sword of damocles dillemma I faced when presented with arimidex (or any of the AIs). I won't reiterate everything again except to say that I was leaned on heavily that I MUST take it. After the one pill, I crawled back to what I had been using in the form of alternatives.
I was angry at myself for causing my already weakened by bc body more trauma. Ok, so I have moved along and just keep trying to adjust. Imagine my absolute FURY when I ran across the most recent treatment guidelines issued in November 2010 (month of my BMX) by the The National Comprehensive Cancer Network (NCCN) ( a not-for-profit alliance of 21 of the world's leading cancer centers). These are not a group of voodoo we can cure you bullcrap if you spin in a circle kind of folks, no, these are the LEADING EXPERTS IN CURRENT CONVENTIONAL BREAST CANCER TREATMENT THERAPY...(I will include a link at bottom)
So, after reading along (as being a rogue on my own still does not completely suit me, thinking sometimes-man, I am gonna die because I didn't keep on the AI kind of thoughts...) seeing if perhaps there was a different combo or drug that was medically acceptable by maintstream medicine for me. Which lead me to a website....mind you, it was not a news headline screaming this information which would have been nice:)
So I looked up my stats and you follow a very specific path by your grade, type, node invovlement, ONCO score, etc...to what the current guidelines for treatment following surgery are. Hmmmmm, my heart was racing as I read it, for it does bother me to think I am out there on my own sometimes even when it just feels so right inside....then BAM...NO ADJUVANT TREATMENT IS NEEDED.... WTF??!?!?! I looked quickly back to the face page and retraced it...thinking, maybe that is just wishful thinking....so I did it again and again and then once more....no adjuvant therapy NEEDED. Even on the next level where there is lymph node spread with a tumor less than 2mm inlymph, it says ADJUVANT THERAPY MAY BE GIVEN.
It just outrages me. Literally 50% of all the stress I have experinced since DX has been over this crap. After being told when the patholgy reports were all complete that "It is highly doubtful you will ever die of breast cancer" to a complete panic that I did not want the adjuvant therapy...And this from doctors affiliated witht the very same centers that produce the guidelines for treatment. Now mind you, as the BC severity increases, so does the recommendations for mutiple treatments and duration of treatment. But it sure is not a blanket thrown over all of us ER/PR+ as I have been told and bullied into believing.
Here is direct quote lifted from their website and then if interested, you can take the linkn below to the site -please not the word individual and how it is used...as well as the need to constantly change as knowledge does...
Over the past 15 years, NCCN has developed an integrated suite of tools to improve the quality of cancer care. The NCCN Clinical Practice Guidelines in Oncology (NCCN GuidelinesTM) document evidence-based, consensus-driven management to ensure that all patients receive preventive, diagnostic, treatment, and supportive services that are most likely to lead to optimal outcomes.
The NCCN GuidelinesTM are a comprehensive set of guidelines detailing the sequential management decisions and interventions for the malignant cancers that affect 97 percent of all patients with cancer. In addition, separate guidelines relate to major prevention and screening topics and another set of pathways focuses on the major supportive care areas.
The NCCN Guidelines are composed of recommendations based on the best evidence available at the time they are derived. Because new data are published continuously, it is essential that the NCCN Guidelines also be continuously updated and revised to reflect new data and new clinical information. The goal of the NCCN Guidelines is to help oncologists make the major clinical decisions encountered in managing their patients by providing ready access to synthesized information. The NCCN Guidelines provide recommendations for appropriate care for most but not all patients; however, individual patient circumstances must be considered when applying these recommendations.
lots of interesting reading.....
Anyway, that is my Sunday morning rant...the link to NCCN is below..
take a gander at the insititutions behind it and the doctors listed...I don't hear any quacking...
http://www.nccn.com/images/patient-guidelines/pdf/breast.pdf
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Perhaps the confusion lies in wether or not it's used in a metastatic setting. Overall survival for a metastatic patient does not increase.....ever, regardless of therapies. I guess some oncs aren't as straight forward in telling patients that. I totally understand though, why they wouldn't want to...but it is what it is.
Edited to add: (after reading annette's post). It all sucks. I can't imagine being in an oncs position, prescribing treatment that might cripple, might kill, might help. I can't think of a worse job. Sometimes I think they're just flying as blind as we are, using what little they have to work with, in very dire circumstances. I'd rather clean sewers for a living.
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annettek - I totally agree that all care must be individualized. Treatment must be based on a combination of best science - coupled with patient - related factors like comorbidities, overall health, and preferences. Too often patients and docs use NCCN guidelines as an absolute standard - docs do it as to cover their a**es. Its unfortunate.
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I don't necessarily think they do it to cover their a$$es....more like a lack of options.
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it is somehow worse when they do not keep up on the most CURRENT guidelines...
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A comment on statistically significant improvement vs. not statistically significant improvement: Just because a particular trial does not show a statistically significant improvement, that does not mean that the treatment doesn't provide a significant improvement in the population being tested. It just means it wasn't proven to the point of being 95% sure that the improvement exists.
Totally made up example: In a phase 2 trial of 200 patients Treatment B reduces recurrence by 20% and Treatment A reduces recurrence by 30%, showing a 10% absolute improvement. However the results are not statistically significant. Does this mean that treatment A does not overall produce better outcomes than treatment B? No, it just means it wasn't proved. This lack of proof, does not make the premise false. Often this lack of proof is because the study is either too small, or the variation in response is too big.
If the same treatments are studied in another trial - this time with 3000 patients, and the exact same outcome occurs (30% improvement versus 20% improvement), the results will likely be statistically significant - thus proofing with 95% surety that the treatment is effective. (Note: there is still a 5% risk that what was "proved to be true" is in fact false - that treatment A is not in fact better than treatment
Generally - the greater the treatment effect, the fewer numbers of patients are needed to prove statistically significant effect and conversely, with smaller treatment effects, much larger numbers of patients are needed to prove the effect.
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Quote from Wornoutmom: (believe this was on page 12)
Now I am HUGE into diet etc I have calculated each food I eat for 17 years to the point of th digestive processes. I am well above the average person in this regaurd. Leg press 540lbs.
I read this and my first thought was "there goes any theory that diet can cause cancer" - Not that I ever thought diet had a huge part in it but reading that statement about calculating food to the point of digestive process. Let's see - well doesn't look like exercise has anything to do with cancer as far as reducing your risks if you look at how much you were able to weight lift.
Personally for me.......I was a lean machine - not an ounce of body fat - working a manual labor job that had me lifting up to 1,000 lbs over an 8 hour day and I got BC.
Wornoutmom - your OP was very controversial to begin with - not that this was your intention but anytime you start a post that pits alternative versus conventional treatment - there will be high flying emotions and arguments for each side.
All I am saying is that if you start the thread asking for opinions or people's personal history - then don't turn around and tell them they are disrespecting you for having a different opinion. I have been following this thread since the very first day and have not engaged in this thread due to the controversy, however, your comment as I quoted above - well let's just say it totally confused me. IMHO - if someone was into diet as much as you were and so physically fit as you were and still got BC - why would you select treating with alternative methods? Sorry - but this is very confusing and doesn't compute with my chemo brain.
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Mollyann is obsessed with lago's post count and comes on periodically to keep us up to date. I don't see any problem with posting the fact that sometimes congestive heart disease is reversible (my father had it so I know this is true. They actually have people coming off transplant lists because the meds reverse the problem) and sometimes it is, unfortunately, not reversible. lago can post one trillion times in a week and that wouldn't affect the facts behind that post or her right to post it.
But thank you, Mollyann, for allowing the rest of us to keep up with your tally of her posts.
Meanwhile, Herceptin like all drugs has side effects and folks need to go in with knowledge of them. Sometimes vulnerable people can be flagged ahead of time because of MUGA scan results, but not always. However, it is true that these kind of side effects are awfully rare and that herceptin has shown a dramatic ability to treat her2+ cancers. Thats the reason triple negative bc is now seen as the most dangerous, while when I was diagnosed it was her2+.
I think women with very early stage BC have the most difficult decisions to make since the benefit they receive from any treatment is going to be minimal. I don't know what decisions I would make in that situation. But for those of us with positive nodes these treatment options provide much more benefit.
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<<<Clapping for Lago's post count----I will be joining you at this rate, my friend>>>>Post on, and like member said, thanks Molly for giving us an update:) Molly- we are all guilty to a degree in posting our thoughts as gospel but I believe it comes from a point of caring and wanting everybody to get better and not hurt so much for so long....the majority of people I have *met* on BCO are all about the healing and caring...so if we blurt out something that may or may not be correct, well, we are all grownups with brains. And if someone mindlessly accepts whatever they read on here or anywhere, then they have bigger problems than BC.
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For some good little tutorials in how to interpret medical statistics, I strongly recommend articles written by Andrew Vickers. They are written in close to layman's terms so that medical professionals can understand them.
To find go to medscape.com (sign-up is free). Then search for "Andrew Vickers" and his articles come up.
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I'm clapping too!
Ask questions. Question authority. Respect other's choices.
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Live and let live.
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Sorry to delete, just decided to check out of this thread.
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More applause for Lago. You go girl!
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Molly- I hope you are talking about an article in which the reporter contacts people directly prior to using any portion of stories he/she may have heard about or read on here. It would seem that would have to go through the moderators. As it would be extremely WRONG for anything that anyone said on this board to be QUOTED anywhere else. And if anyone who divulged that info for a story, well, that would be as wrong as WRONG could be. Could destroy the fabric of BCO. Much like AA. What is said here, stays here. Anonymous. ...just wondering how reporter found out about BCO and PARTICULAR people on here///??????
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I am about to say a heretical thing in the yes of many. I am posting from a Macbook and I hate the Macbook – BAD APPLE, I say. Awful mouse.
I reported Mollyann’s last post. There are ways to say things.
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I wrote an email off the main facepage of BCO directing them to this thread....I was that uncomfortable.
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Annettek - I also felt angry with myself for insisting on persisting with Tamoxifen despite that harm it was causing me. The elevation in body temperature was the least of my troubles. Let's just say that my ability to survive was in question. If only my problems were limited to out-of-control hot flashes! I totally identify with your rage at all of this. I no longer feel it but only because I finally stopped the Tamox. And also because I realized that cancer treatment is partly about the blind leading the blind.
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Mollyann, you've got to stop stalking lago. I think we're all responding with humor but its getting creepy and very odd and this business of a reporter just sounds threatening. In fact, I'm going to report this to the moderators (so you know its me and not lago who has, admirably, not engaged with you on this).
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Report away! I consider it a badge of honor.
I've archived the messages anyway for the record.
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I have also had enough of Mollyann's obsession with Lago. MOTC, I am going to join you and also report her to the moderators.
I think Lago has done a wonderful job of not letting Mollyann get under her skin. I'm not sure I would have been able to do the same. Keep posting Lago! I learn so much from your posts.
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Ahhh, this thread is back. I've been following but not posting because I'm recovering from surgery.
Just wanted to chime in on the idea that these forums are off-limits for reporters or anyone else. BCO is a public internet forum, anyone can register, read, post, etc., and yes, reporters could even quote from the threads if they wanted. We should not assume any privacy rights at all. That's why most or all of us use unidentifiable screen names and such.
I say this as a reporter who has quoted from internet forums in the past (however, I'm here these days as a woman with breast cancer, not as a reporter!) Reporters should try to contact posters if they want to interview them further, and it's generally considered sloppy or lame reporting simply to pull posts from the internet. Most editors won't allow such things (except in extreme cases, where it could add some value to the story.)
Anyway, just wanted to warn those who think these forums have any sort of privacy. Anonymity yes, if you've protected it...privacy, no. That might seem scary or wrong, but the whole point of these forums is to have a public place where people can read, learn and chat about issues related to breast cancer.
But I can also pretty much guarantee that NO reporter (or news outlet) cares about the number of posts any poster contributes to an internet forum in a given period of time. Only Mollyann seems to have an interest....or rather, an obsession with that.
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