Survivors who have used only alternative treatments
Comments
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Yes, Athena, doable is not the issue here. Because a lot of women feel "doable" or "bearable" was the concern for them, they extrapolate that to others. Also, "doable" is a very easy subject to write about.
After I recovered from the shock and could do research, my main concern was, did the guideline crafters make recommendations to support the evidence?
I find most people don't even know official Guidelines exist or where they came from. My onc never passed that info along. Thank God, a colleague with breast cancer pointed the Guidelines out to me early on to read for myself ---along with their ten disclaimers.
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Beeb75, you wrote:
......Fifty to 66 percent of people in the U.S. will get cancer in their lifetime, .......
This many people get cancer in their lifetime?
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Ah, woops, I flopped the numbers.
The stats, per SEER (US Gov) are 1 in 2 men and 1 in 3 women. I'll check those and correct my post.
Thanks for catching it -- I'll blame that one on chemo brain (had it 1 week ago.)
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But people do have cancer or precancerous cells in their bodies without knowing it:
Cancer cells and precancerous cells are so common that nearly everyone by middle age or old age is riddled with them, said Thea Tlsty, a professor of pathology at the University of California, San Francisco. That was discovered in autopsy studies of people who died of other causes, with no idea that they had cancer cells or precancerous cells.
From: http://www.nytimes.com/2009/10/27/health/27canc.html?_r=1
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Let me tell you to be careful and cautious of what people say, there are women that go to support groups or enter web sites and pretend to have breast cancer and many give terrible advise or experiences that do not exist.
I went to a support group where this woman kept telling that her praying , alternative treatments and herbs had cured her, that one should not get traditional treatments.
She attended for a year, it was found that it was a lie, after an investigations by the monitors, she never had cancer of any kind.
A couple of years later I had a call from a hospital, this lady wanted to see several of us, she had terminal cancer, she wanted to apologise before dying.
I wanted the most aggressive treatments I could have , I am glad with my choice. No alternative treatments for me. There is no clinical proof.
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wornoutmom~ I sent you a PM.
There are a lot of people who have different views and ways of seeing thing and in this thread there have been some very RUDE comments. Sad
We are all entitled to opinions but I am really sad to see some people think their opinion is superior. 0 -
I don't understand, Athena, why you are so offended by women who say they did chemo/rads and it was doable. That was exactly the sort of thing I wanted to hear when I was diagnosed. Its also the truth for many of us. Should we lie?
People have answered OP's question. There have been several women on this thread who didn't do mainstream treatment. None of them had OP's pathology but honestly, you aren't going to find many stage III her2nue+ women who (a) forego chemo and (b) survived. You can ask over and over again for women to answer ehr question but if such women don't exist, we can't conjure them out of thin air.
I do think OP has gotten a lot of helpful suggestions from many women here who have used complimentary medicine. I don't think anyone's been rude here.
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I thank God for Herceptin, My Mom was diagnosed with HER2+ liver met when my daughter was born. The herceptin allowed her to survive 5 years and now my daughter has memories of her Grandma. Without it she would have made it 2 maybe 3 yrs max. Herceptin is a targeted antibody therapy, it doesn't work like chemotherapy. Please at least think about doing the Herceptin.
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Member of the club:
I am not "offended" - why should I be? It has nothing to do with me, personally. I am merely concerned that telling someone that chemo is doable could set the person up for false expectations. By chemo being "doable" obviously one means that the SEs were tolerable. But no two people react the same to any kind of treatment. If you want to say that you found chemo tolerable or doable for yourself, as a piece of information you want to share, that's fine and that is what many people are here for. I think there is value to hearing inspiring stories. It is also great to share tips on how to cope with SEs or prepare for the infusions, as many sisters here do. But I believe the utmost care has to be taken to say that this was your experience only and that another person's may vary. For some people, chemo causes lifelong impairment, and for others, it means death and you have no idea which side of the ledger you are talking to at any given moment.
I have been in medical treatment for many years (not cancer; fatality rate for this other disease: about 20 percent) and know all too well the need to be careful and not cross the line from sharing experiences to giving medical advice or telling someone how a substance will affect them. To give one of many examples, a treatment that some people sailed through almost ruined my life and killed a few others, leading to a black box warning. A medication I currently take, am a great responder to and consider a life saver, is singled out as the cause of permanent brain damage for a friend of mine. The medications in question have far more stellar records than any chemotherapeutic agent, and have an infinitely more lengthy, solid and voluminous body of research backing their efficacy and relative safety. The one that is helping me has been in use since ancient times in one form or another.
So no, to answer your facetious question, you don't have to lie. In fact, please don't.
But don't go around telling people, in declarative terms,to have chemo when you are not a doctor. You have a habit of making declarative statements urging people into treatment with no qualification to do so but with complete certainty in your 'voice'. Answering a woman whom you don't know from Adam with the words "Oh dear" and saying that she is about to make a big "mistake" is nothing short of irresponsible. No medical doctor with a specialty in oncology would jump to such a conclusion on an anonymous message board; you should not do so either.
You mean well, your intention is to help, and it shows. But there is no single right and wrong with cancer at this stage of our knowledge. I personally would never consider alternative treatments but I can't blame some for trying, considering the dismal record we have in the War on cancer and considering the enormity of the risks associated with treatment that is but a few decades old and has an extraordinarily rickety body of evidence supporting its value.
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Dear Wornout....you have a heavy decision to make. I just have a couple of comments for what it is worth-please bear in mind that the majority of people who forgo conventional treatment following surgery tend to be early stagers wiht no node involvement. That is essential to keep in mind
Member of the club is right in regards to the fact that no sanctioned clinical trial would be allowed not to treat the control group with the current standard of care if they have been diagnosed with cancer. Not gonna happen. (Now there are unsactioned trials overseas in Eastern Europe, but that is another story) That is why all of the current clinical trials for alternative therapies that include a group receiving a placebo are only for patients #at risk# for breast cancer. They all absolutely exclude anyone previsouly diagnosed with breast cancer. I am not saying women would not be willing to join a clincial trial, but they can't have them. The closest thing they can do is integrative medicine which is the blending of conventional with alternative meds. I am not sure where you live but one of the leading centers in the country is the Block institute - I think it is in Chicago-it is integrative..you can also look up Dr Andrew Weil- he heads up the intergrative medicine institute at University of Arizona or maybe it is the University of New Mexico. The reason I am suggesting this strategy is because of the stage of your diagnosis. It is one thing for me, a stage 1 grade with a 5 mm tumor ER+HR+HER-to forgo tradtional AIs but BUT I will honestly state that choice was made based on my diagnosis. I went overkill with my surgery by having a BMX. No regrets. But I still have a quite a regimen of supplements that I have to take.But again, my choices after that might have changed had my results been different. In fact, I know they would have. Sometimes people forget that "supplements" and alternatives are medicines and have to be researched and treated with the same caution that prescription drugs are. What may work for me could kill you or visa versa.
Please do NOT I beg you even consider contacting the quack Bryzinski here in Houston. He is a quack and is dangerous. It is about the cash for him. The entire biotech community wanted to embrace him if he had a solution that worked...he does not want the "sun" to shine on what he does. So instead he ignores his lack of cures (beware anyone promising that) and dangles false hope based on shoddy science to people. And fading television actresses are not the best reference for saving your life. Suzanne Somers is as reliable a source for curing cancer as Jenny McCarthy is for curing autism. nuff said on my opinions of them.
We are all scared in one way or another. Know that. And we will all do what we can to help you along, as we have been helped. We may argue and bicker but I believe we all come from the same place of wanting all to survive this bastard of a disease. Please talk this over with your husband and lay out all the facts and risks before you decide. I think the truth lies somewhere in the middle. Good luck and know you are not alone.
big hugs
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Athena- that is quite a quote you have there in your tagline- I am going to borrow it...so true, so true...
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Be my guest...It came to me the other night.
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Athena, I would never claim that women don't have side effects. I apologize if I ever created that impression. I always say most women find it doable, but of course not all. I say the same things about hormonal meds. I am on Arimidex and feel great, all my side effects seem to be positive. But I know that is unusual and I would never tell women that they will feel great on arimidex. I do think it is the truth that most women find chemo doable, and thats all I said. Thats the truth. Not all, but most.
I stand by my "Oh dear." When I read that she has three young kids and was considering foregoing adjuvant treatment, I felt sad.
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I don't understand what is wrong with saying chemo is doable. Many stage 4 women are doing chemo, heck. Anyway there is no danger ever of anyone self-administering chemo. it's understood that a doctor has to recommend it based on the individual's medical condition and will be monitored closely throughout. I think it is more dangerous to say do not get chemo as we then have no idea where that road takes a patient, apart from whether there are effective alternative treatments out there. There are just too many quacks around!
As to the ethics and difficulty of doing studies with placebo arms, here is a related new European study out on Herceptin. http://www.hon.ch/News/HSN/650282.html
It has an observation arm (no H), a one-year and a two-year arm (with H). All had chemo. But after the researchers could see how effective Herceptin was, they had to crossover the observation only patients to the Herceptin arms. In the end, most likely because of this crossover, there was no significant difference in overall survival. IMO if there had been a significant difference, this would have made the trial unethical. As it is, I think those who took part in this trial knowing they would be observed only deserve our heartfelt gratitude.0 -
Maybe no one answered the orginal question because none of them is alive to respond. It's like when my mother asked the chemo nurse why there were no support groups (2004) for small cell lung cancer patients. When the nurse hesitated with a stunned look on her face, Mom replied answering her own question with the "elephant in the room"- Is it because there are none?
Before anyone jumps on this - I am talking about SMALL cell, always inoperable and most always found in the advanced stage, not the NON small cell types.
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mother, it isn't helpful to declare that "maybe no one answered the original question because none of them is alive to respond."
Maybe no one answered because they are out living their lives. There's a selection process to get to BCO, for one thing, then a whole 'nuther selection process to get to the discussion boards, then another to sign in, then another to finally post. The posters are in a tiny tiny minority of women in the world who have BC. To make decisions or be swayed by what feels like the majority opinion on an internet board is really dangerous.
Yes, conventional therapies can be lifesavers for many fortunate women. But women survive without them. Case in point - a woman in my support group was diagnosed with Her2+ BC ten years ago at age 29. She was not given Herceptin because it wasn't protocol at the time. She's still alive and well and thriving....she even had her babies post-treatment. Yet she's still having lingering effects from chemo today, all these years later.
Conventional therapies can give you some good odds, but there's no guarantee an individual woman is going to fall on the positive side of the odds. We all just do the best we can, which is all anyone can ask of us. If that means conventional therapy, great. If that means alternative only, that's great too. It all depends on what that individual can live with. I believe the most helpful we can be to our sisters is to explain our choices, why we made them, why they were right for us, be truthful about the experience.....and then don't push or judge. If we're here on the boards, that means we're grown women with the ability and responsibility to make our own decisions.
Peace out, sistahs.
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Heidihill:
From my admittedly one-sided perch (that is, I am early stage), I believe Stage IV is a different universe when it comes to talking about what is doable and what isn't. I should have clarified that my comments refer to non-stage IV cases, because what I may find unacceptable now could change if I only had the choice between soon and certain death versus continued living, and GENERALLY NOT the choice between a full, long life and a life of permanent handicap or impairment or early death from treatment complications. Metastatic cancer, untreated, always means early and certain death. Not so with every other stage. (I know, I know - I am sure there is someone out there whose mother's neighbour's cat's aunt survived leptomets for 40 years on Vitamin D - I am not interested in ridiculously rare outliers).
At my stage, and through stage III, one is still hoping to get to that point, years down the road, where one can say "Shhhhh - cancer never happened - I got away with it, ha ha!" (see my signature). This seems like a luxury and privilege to someone who is at Stage IV. The strange thing is that even privileges have their drawbacks, because the early stage universe is one of mind games and endless uncertainty.
And I suppose that uncertainty and those mind games are what are fueling the dialogue on this very thread....
Doability has such a different meaning in early stage vs. Stage IV that it almost deserves a separate entry in the bc dictionary. Better to be uncertain than to be certain of a terrible thing, of course.
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I think we can all agree that after all these years and billions of dollars raised, where we are now is shameful......What follows is only my opinion. The only real great strides have been made in childhood cancers. NOBODY should die from this disease anymore....ever. They've had plenty of time and plenty of funding to cure all cancers 10 times over. I know I'll probably get in trouble for this statement and I don't care....not gonna argue about it with anybody. In the case of breast cancer, in particular, if the best they've come up with is Herceptin (which benefits only a small percentage), and a few recylced chemos under a new name....well, that's a joke to me. I sincerely hope that cancer agencies everywhere are embarassed.
Edited to add: cut, burn, poison....still the standard of "care". UNACCEPTABLE
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Gracie, do you mind if I cut and paste your post in its entirety here? That is how much I agree with it. So here goes:
I think we can all agree that after all these years and billions of dollars raised, where we are now is shameful......What follows is only my opinion. The only real great strides have been made in childhood cancers. NOBODY should die from this disease anymore....ever. They've had plenty of time and plenty of funding to cure all cancers 10 times over. I know I'll probably get in trouble for this statement and I don't care....not gonna argue about it with anybody. In the case of breast cancer, in particular, if the best they've come up with is Herceptin (which benefits only a small percentage), and a few recycled chemos under a new name....well, that's a joke to me. I sincerely hope that cancer agencies everywhere are embarassed.
Edited to add: cut, burn, poison....still the standard of "care". UNACCEPTABLE
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Athena and Gracie: Excellent post and it was worth repeating. I did mx, chemo and now Tamoxifen. I was so thrilled to be done with it that I think I became a bit complacent about the limited options we have. I was grateful to have the tx but you are so right. Cut, burn, poison is not acceptable. It may be all we have for now but we should be angry and keep fighting for better. Dammit, everyone deserves better!
Beth0 -
I agree that we cannot rest until we have FAR better choices for treatment and a CURE. It is unacceptable for even a single woman to die from breast cancer.
I do have to say, having gone through my mother's brain cancer, that treatments for breast cancer are so far ahead that its like living in a different universe. With brain cancer there is one protocol, no choices, and it doesn't work for long. No targeted treatments, no hope. And no support groups, not even on-line discussion boards like this one. No one lives long enough to take advantage of such things. The experience made me appreciate how far breast cancer research has come. But still, FAR form where we should be.
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I did not read all the flurry of posts here. I agree that you should NEVER use information on this forum alone to reach your decisions. However, one thing that you must consider is that you absolutely cannot compare HER2 positive breast cancer with any of the other types of breast cancer and certainly not to leukemia or any other organ cancer. My brother went through leukemia as a teenager and watching him struggle through chemo at that time made me say I would never say yes to chemo. Well 25 years later, I said yes. I went from stage IIb to stage IV in a matter of 3 weeks with liver and bone mets. her2 positive cancer is nothing to mess around with. I did 6 cycles of TCH starting in May 2008. In June 2008 I had clean scans and have continued to have clean scans since this date. I did a combination of chemo and natural remedies. I see a naturalist and up until my last scan in November, he has always seen cancer in my body at a cellular level. Which treatment - natural or medical - got me there? I don't know for sure. I have seen women fail both ways. However, since you are already stage III, I would be very nervous going alternative only. I hated putting that poison in my body but my cancer was advanced and it absolutely destroyed the cancer. I completely believe my alternative pursuits along with getting Herceptin are what is going to help keep it controlled.
Jennifer
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Well for those who have asked I am still here. I have 3 kids so time on is limited
I have found survisors but have to say I know why they don't speak as they will be attacked. There is a 22 year survivor which spread as far as her lungs who became vegan and is running in the Ironman in her 70's!! Ruth Heidrich Wow to name just one off board. Why on earth would you bash someone who is thriving and doing well I just don't understand. Even if it is a miracle good for her. That is so sad as we should listen to all who are doing well and learn not necesarrily agree but learn. I have opinions but I have the kindness in my heart not to personally bash or argue with anyone that is why I never refference anyone personally unless privately. Maybe we would find a cure if that is how both sides approached this. For me I am look at the who picture beyond just what is being perscribed. The business side worries me. I was shocked yesturday when I took my daughter to my lovely HMO (not alternative) and he said do you know what has been proven to work better in trials than any ohter cough medicne, HONEY! I asked how often and he said as much as you want the good thing is that it can't hurt her and she'll love it. I had to laugh inside knowing about this post. But for years I have been told to give my other kids over the counter meds which have since had recalls and had I mentioned honey they would have told me I was a quack (wish I would have known). It is the numerious occuances like this that make me want to dig deeper.
One question about the Burznski place though I have been on the website and the FDA is involved with them right now with clinical studies. So this perplexes me a bit for years they called him a quack and tried to jail him. Not quite sure how he is able to registar and be regulated in a FDA program maybe I am missing something? Honest question I know things can be midread so that is why I use my signature
I love to hear all the stories and ideas just wish they were all presented in that fashion rather than attacks. If we understand our passion for our choices we can understand the other sides passion as well. Not agree but just understand they are as passionate as me and argueing isn't gonna be productive. I am glad for those who realize that in the end it is up to each person and respect that. Sharing stories is great way to inspire thinking for your situation. I have enjoyed listening to all no matter what my decison. I am also very thankful that dispite the lovely BC we are able to be here to have this discussion
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wornoutmom, I completely agree with your call for openmindedness and tolerance and the need to respect others' decisions about a disease with no known cure. It makes perfect sense in every way.
Good luck in your search for answers, and I hope you find the treatment plan that works for you (which may or may not be what works in the minds of others) and for the people you love.
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Dear Wornoutmom, I so agree that ideas should be presented with kindess and understanding, so here is my story for you and believe me I am telling this story because I really care and I want you to be around for your lovely family forever. I do see that you are a Stage 3 with lymph node involvement. Well, a dear friend of mine had a very dear friend that diagnosed the same year that I was with the exact diagnosis as mine. We both had bi-lateral breast cancer, Stage 2 in the left and Stage in the right and with one lymph node involved. We also both went for 2nd opinions at Cleveland Clinic and the 2nd opinions concerred with the opinions from Magee Womens Hospital. I did do the aggressive treatment:neo-adjuvant chemo-8 rounds, bi-latera mascectomy and 37 radiation treatments. My friend's friend decided to go with the alternative option coupled with faith healing. Oh, my goodness for 4 1/2 years she was declared supposedly NED. Into her 5th year, she agreed to use Tamoxofin, because things were starting to go awry, tumor markers were going up, blood work was showing issues, etc., not sure of all the details, but this dear lady did pass away, after many tests showed it had spread throughout her body. It was so sad. Please forgive me for telling this story, but I do care and maybe we could find a compromise in treatment for you. God bless you and I wish only the best for you, Kathy
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wornoutmom,
I am sorry if you got under impression that ladies who are beating BC and are successful would be bashed here. I think that everybody would like to hear from them.
I made decision for myself and at the end everybody does. Decision that you are happy about. Friend of mine was diagnosed 20 years ago, she had chemo and was fine for 15 years. She never got cancer back but chemo destroyed her liver. She had liver transplant 5 years ago and was fine until several months ago, her transplanted liver is failing and she would need another one soon. BUT, point of the story she is not looking back, she made decision that she never questioned, not then, not when her liver failed, not now. She is 44 now.
Good luck and let us now.
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wornoutmom, I hadn't heard of Ruth Heidrich before. She looks like another author going on my list of books to read. I'm wondering if you've come across Kris Carr yet in your reading. She is suriving and thriving after a stage iv dx of a cancer that's highly unusual and unpronouncable. Her disease also is inoperable and no known treatments were available for her. I'll quickly point out that her disease is very slow growing. For many, that is key to long term survival.
Your status with the her2+, as far as I know (which isn't much on this aspect of bc), makes your disease considerably more aggressive than those with her2-. ...if I'm wrong, I'm sure someone will quickly point it out. There's oodles of information out there for you to find. My impression of Kris Carr is that she's very astute at separating the wheat from the chaff, and she came across a lot of chaff, especially when her dx was new. Her blog is crazysexylife.com and she has an awesome posse of guest bloggers to bring news you can use every day.
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Athena and Gracie, you wrote:
".....In the case of breast cancer, in particular, if the best they've come up with is Herceptin (which benefits only a small percentage), and a few recycled chemos under a new name....well...."
Of course, I would tend to agree with this statement. Nevertheless, I think it would be fair to point out that, compared to other cancers, breast cancer oncology does offer options that are not available to other types of cancer.
Having said that, we have a long, long, way to go, indeed, in breast cancer research, before we reach the point where tools will be available to determine which treatment benefits who, and in what proportions, because some treatments simply do not benefit most patients.
From my humble point of view, we would move faster if money was not such a big player in research. Financial interests currently stifle exciting research, because good old remedies are far less risky....... financially for the drug companies. That's the real problem
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