Survivors who have used only alternative treatments
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Yasmin - this thread is about HER2+ve - that's WOM's dx - that's what she's asking about. I do notice no one has come forward who was HER2+ve and used alternative treatments - I wonder why.
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I'm with Iago and Valgirl, AnnNYC as well. This thread is about complimentary medicine, which, for all practical purposes, is for women who have blended same with conventional, not solely for women choosing complimentary/alternative. Many of us, as noted, used Western along with complimentary therapies.
Enough with the language about "them" and "us" or "we" and "they". As someone once joked to me about the Catholic church: "It's a big tent. Lots of us in it."
janyce
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In my humble opinion, Herceptin is not "chemo". It specifically targets the Her2 receptors that are present on the tumor cells of those of us who are Her2 positive. It doesn't attack "normal" cells or cells without the Her2 markers. It is an absolute miracle for those of us who have this very aggressive cell.
WOM, you may want to watch the movie "Living Proof", which explains the development of this drug.
We all need to explore and research all treatments that are out there. Cancer absolutely sucks!1 -
scuttlers is correct - Herceptin is not chemotherapy. It is a targeted therapy. Great suggestion to watch "living Proof" - what an amazing story!
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That's a fact ladies...Herceptin is not a chemotherapy. To all Her-2 positives, I highly recommend the book called "Her-2, The Making of Herceptin, a Revolutionary Treatment for Breast Cancer, by Robert Bazell, which the movie "Living Proof" was based on. Herceptin proved the very principle that we can identify what's broken in a cancer cell and fix it.
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WOM, as you just said, you have risk factors to consider and it's not anyone else's place to tell you what to do or suggest you're a bad mother if you make different choices that you feel will be less risky in the short term.
What bothers me is the constant repetition of the same message. 1- People are concerned about your welfare, 2- they want you to take the chemo and Herceptin. OK. I'm sure you heard that the first time so why repeat ad nauseum as if you are deaf or stupid? It's rude and condescending for people to keep assuming you have not heard and understood their pleas or that you don't care about your children.
Putting links to scientific studies is fine as it helps anyone coming to this thread who has not yet made up their mind, and scientific facts are not insulting, only the assumption that people need to be told what to do multiple times.
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Lago, I don't think I've read of a single person on the alt threads who has not had surgery and we are all open about our use of chemo, radiation and anti-hormonals if we've done them. There's no shame in doing both and anyone who is so closed minded that they would insult you has an attitude problem and hopefully they have not stuck around to insult anyone else. I make no secret of the fact I'm taking tamoxifen and no-one has questioned that. So I think you can relax.
If people want to discuss Herceptin, for example, then the HER forum would be the best place to do that, but if they are looking for an alternative or complementary to Herceptin then this is the place to discuss it. Making suggestions to WOM is fine, but please, once was enough. Repeating the same message over and over will not change anyone's mind. (Says I, repeating my last post).
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Mountains1day Just got my copy of ""Her-2, The Making of Herceptin, a Revolutionary Treatment for Breast Cancer, by Robert Bazel" this week. Bought it used. I plan on starting it Tuesday at my next Herceptin infusion
Sheila I didn't make any of that stuff up. I have been on very few threads in this section because of it. There are debates about taking more than sentinel lymph nodes. Yes people have the right to question surgery too but not say that surgeon's are butchers. I mention this to illustrate the fact the attacks fly in both directions. I'm not saying that everyone on the Alt threads are like this but there are a few very vocal gals that can get pretty nasty.
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Keeping in line with the original poster, are there any "survivors" who chose an alternative or complementary tx for Herceptin that Sheila gave permission to discuss on this thread? If so, please share.
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This thread is too long. Maybe consider starting your own thread
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These can be facts and opinions that inspire strong feelings, and it's good to see so many reasonable and peaceful Members guiding others to respect every point of view.
If you don't want to read what someone else says, you can block Posts and Private Messages from another Community Member. Just click the link to see how. Or, if you find a post that is against the BCO rules, please click the Report link that's right beside every post. Of course having a different viewpoint isn't Community abuse.Judith and the team
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Lago, I agree, there are rude people everywhere. I didn't mean to imply you were making anything up. I've seen extreme rudeness from alt and conventional people but more often people in general just don't realise the impact of what they are saying. I'm sure I've inadvertently upset some people too. My apologies to anyone that applies to.
Maybe the 'butcher' comment was just someone venting after a bad surgical outcome. Not fair if it was directed at anyone here or their decisions, but venting in general is understandable if the person has a lifetime of LE to look forward to and just feels mad.
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Mountains1day, There are no alternatives to Herceptin that I know of, it's a unique targeted therapy. I was just using it as an example. I thought this was WOM's thread and her OP was about alts for her particular diagnosis.
Personally I find Herceptin fascinating and would love to read the book mentioned above. With more of that type of research maybe we'll have the beast licked before too long.
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Mountains1day, I am HER2+. I had a lumpectomy (dirty margins). I chose to forgo a second surgery and instead concentrate on alternative therapies. I am one year and six months out from my original diagnosis so I dont yet consider myself a "survivor" and I dont suppose I will ever say that because for me, the word implies that I was a victim and I just dont feel that way. I just had a mammogram and ultra sound that was clear so I am victorious so far.
I dont oppose chemo for those who choose it. After much study and contemplation, I decided that my internal environment was condusive to cancer and chemo would not fix that. As a matter of fact, it would hinder any chance my body had to fight it by disabling my immune system. Chemo may kill some of the cancer cells but I believe that unless we fix the underlying cause, it wont fully eradicate the disease. Cells will remain to rear their ugly heads again unless we fix what was wrong in the first place.
Herceptin may be the wonder drug that some claim it is but my onc would not administer it without chemo (not standard of care). Since I opted out of chemo...no herceptin for me. So that wasn't a choice I made but one my onc made for me.
Once I found MY way in my treatment choices, I dropped off these boards only to return, a year later, to share and discuss what I felt was information everyone afflicted with cancer should know. So in answer to WOM's original question, I believe the women who have success with alternative choices have not been here or are not lingering here (at BCO) as they have moved on and do not focus on what was.
Someone above mentioned that they would like to see studies on women who have chosen alternative treatments. That would certainly clear things up for a lot of us. Unfortunately, the powers that be aren't interested in studying women using those methods. So aside from anecdotal accounts we will most likely never know.
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Its really the proponents of the alternative methods who need to study them. there is a lot of money being made on supplements, etc . ., and these folks -- someone called them Big Herb -- should be plowing it back into studies. They aren't required to because they got themselves exempt from FDA oversight, and thats why they don't do it. The government does fund some studies into alternative and complimentary approaches but, as had recently been pointed out (this thread? another?) its the manufacturers of supplements that are resistant to studies.
I also think it would be problematic --ethically and legally -- to design a study in which one arm received no conventional treatment. All human studies have to go through review boards and they won't approve something as risky as that. But there's no reason not to design a study with complimentary medicine, and they do have such things.
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suepen ( a response to your post),
my mother is Her2+++ actually and has been on alternative theraphy since her bilateral mastectomy 8 Feb 2010.. so its about 1 year and 2 months out (impositive 1 year and 6 months).
the reason why I was attracted to this thread is that WOM is also Her2+ (though younger than my mother) -- I also do not call my mother a "survivor"-- what I learned from BOC is the term NED (no evidence of disease) --she you could probably call my mother a NED - rather than a survivor.
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it seems we are starting to make arguments again on why we should choose X or Y instead of X and Y. the title of the thread says X only.
I guess there are other threads we can use for X and Y. and there are also lots and lots of threads that are discussing Y outside the (Alternative, Complimentary and Holistic Theraphies). and also threads that discuss the merits/demerits of X and Y.
haaaa! I dont know! we are adults.. I guess we all know what to do..I will leave it up to you
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MotC, You answered your own question. All human trials need to be approved by a review board. They are the ones who give the patients access to the trial drugs. If the herb companies tried to run their own trials they'd be breaking the law. It can only be done under supervision with board approval. And as you said, it would be unethical to withhold treatments.
I bet many who are running out of chemo options would be prepared to trial anything as their only option at some stage is to end all treatments. I hope one day a better way will be found to try these other methods and find out one way or another which, if any, work.
One point that seems to have been missed is that alternative methods are more about balancing the whole body and rebuilding the immune system than about applying one supplement. That makes it hard to carry out human trials as each person has different needs. I'm not sure that can be done at a late stage once a patient has been ravaged by the cancer and all the treatments.
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There are studies going on with natural things. City of Hope has a clinical trial going on now with white button mushrooms. http://clinicaltrials.gov/ct2/show/NCT00709020 and there have been studies with grape seed extract also. http://clinicaltrials.gov/ct2/show/NCT00100893 The problem is big pharma basically funds 99% of clinical trials.0
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MD Anderson funded a clinical trial on using "curcumin only" for patients with advanced pancreatic cancer. sorry it seems I am selling curcumin hehehe..
but just proving a point that there are already proper clinical trials using curcumin as a "treatment" for cancer.. not just as a supplement.. go ahead and search for it at pubmed.
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Congratulations impositive. Keep it going. Just to let you know the fact that your are node negative puts you in a better situation not to get mets even with HER2+. NO guarantees of course but better odds. You may find this article interesting on Dr. Susan Love's site.
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There are government trials for all sorts of "alternative". I remember when I started to get a little nueropathy in my left heel from chemo I came across this (under Clinical Research Ahead, NCI) that discusses some of the alternatives that were in trials. I actually did take the acetyl-L-carnitine and it worked well for me.Drug companies are businesses. We can't fault them wanting to make money. They have bills to pay, employees that get salaries/benefits including health care and investors/boards that want profits to keep happy. The problem is we shouldn't just rely on industry to find "the cure."
I wouln't mind some of my tax money going to research. I know many are against more government but I feel this is the only way something will be researched that might not make a profit. Wouldn't it be nice if eating dandelions killed cancer. Unless the drug company can find a way to bottle it and profit they won't be researching.
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lago,
I agree, there are a few NGO in Hawaii, providing monetary support for people wanting to use complimentary/alternative treatments for cancer.. i hope these NGO's will also start supporting clinical trials like the one done on Curcumin--
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Drug companies fund trials of their own products. That makes sense to me. Some of the companies making money off supplements and alt treatments could also fund studies of their products and most choose not to.
Review boards are a good thing and were instituted because of grave abuses in the past. And they apply to any kind of study involving humans, including psychological trials.
The drug trials always start with metastatic patients and are only directed at early stage patients after they've been approved for women with mets. This makes sense as these woman have more reason to take a risk and also because the initial trials are for safety and not effectiveness.
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Sheila's post, as always, is point on. It's about balance. We must understand that there are no magic pills (drugs) or any one supplement (curcumin) that will cure us. Cancer isn't spontaneous. We have to fix why it got there in the first place to remain NED.
I believe BOTH chemo and alternative lifestyles are effective in shrinking tumors. Unfortunately, those of us who choose the later are having to pick and choose those methods based primarily on anecdotal accounts which is why WOM posted in the first place. She, like the rest of us, are looking for other's accounts since there are no studies we can rely on. As Sheila said, alternative studies are difficult to carry out since we are all different.
The reason I chose a non-conventional way is because I believe that whatever we choose, it's something we must continue for a lifetime to remain NED. Chemo would only ravage the very thing that is supposed to protect us...our immune systems...and of course chemo, if used for a lifetime, would only serve to accomplish what we are trying to avoid. Death.
I have a suggestion. If we are all here to help one another, then why dont we each post why we chose the route we did, how it worked for us and let WOM decide her own path. IMHO, that would be much more helpful than the current format.
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Lago, thanks for the boost and the link, as it is encouraging.
Studies are helpful but I don't really rely on them because I feel it is so much more individualized than that. Case in point...the article says:
"While it's true that some early studies found that women with HER2-positive tumors had a higher rate of recurrence, other studies haven't found that to be the case."
Just about every study you find, you can find one that conflicts it.
And also:
"Overall, the studies suggest that HER2 signals a worse prognosis primarily in women who have node-positive disease."
Doesn't this remain true for ALL cancers, not just HER2+?
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I've read a lot about curcumin. I ingest a small amount of turmeric daily. the best comprehensive analysis seems to come from the American Cancer Society. I don't read 'analysis' from any site that sells.
there are about 25 references.
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impositive I agree that this isn't a definitive "HER2+ node negative doesn't get mets" but it is encouraging. I think the reason this node negative is pointed out is HER2+ tend to get mets more often when compared to HER2- regardless of node status.
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Impostive I am sorry to see the post earlier towards you. The article that was suggested to you could have been presented in a more productive manner and can be read in a snippy tone. "just to let you know" after the congratulations can be taken as "in you face" for a lack of better words. I would understand if it was worded something like my concern is that node + doesn't have as good odds according to this link. This would aliminate the possibility of being read sarcastically. We are all in this together even if we don't agree and should respect one another. I honestly can't see someone who had done chemo getting a repsonse like congrats on 1 year but just to let you know there are women with your stage who die in 4 years. Just to point out how it can be taken.
I know many don't think changing diet will help but am wondering if anyone saw the new releases by Kaiser regarding women who didn't increase their body weight by 10% (think that is the number using memory here
) having less chance of reoccurance. I would say this is showing diet must have some role. My husband found stuff on olive oil and emodin for her2 surpression but I haven't had time to dig into it yet.
Are there any doctors that do herceptin alone anymore? I was willing to do it but mine wouldn't allow me either. I do find it weird that those who had hercptin only are not being called back in for the chemo? If it doesn't work alone than wouldn't technically it mean the women given herceptin alone didn't get proper care and are being put at risk?
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wornoutmom I was very sincere in my congratulating Impostive. I have no idea why you would think I was being snippy posting the link which highlighted positive part of her diagnosis. She is node negative. You might have missed that.0
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Extra body weight means extra estrogen so there is definitely some support for the idea that keeping you weight down helps. My onc encourages this.
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