Survivors who have used only alternative treatments
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I had to google zumba. Believe me...NOBODY needs to see me doing that! Including me! LOL
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Thanks everyone for your replies..I appreciate them..I think I may start with yoga..and go from there..
Hi Kymn! A co-worker of mine (and out 7 years from TN) does Zumba...I haven't tried it but she says it is really a great work out.
And Susan I'll check out the creating health and beauty naturally on U-TUBE... sounds interesting...
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Yes! Zumba is brilliant! ......Quite high-impact though - it must be doing me good...
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WOM, dont know if you're still here but since you and I are HER2+++ and thought about Herceptin but didnt want the chemo that goes along with it, I thought you might be interested in this article I found. It at least helps me to put things in perspective a little more.
Herceptin or Hype
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Very old article probably made redundant by the recent outstanding long term results of various trials.
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Wow, susieq, you're a quick reader! Yes, I noticed it was 5 yrs old. I considered Herceptin as a treatment choice but opted against chemo. My onc wouldn't do one without the other. I know WOM had also had to tangle with that. Can you post some studies of the long term resluts and are there some with hercetin only or a combo showing absolute risk?
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No susieQ,
The most recent 2011 Herceptin studies still show no overall survival value and only recurrence advantage. You may want to check the BCO updates on this very website.
"More than 89% of the women who got adjuvant Herceptin were alive after 4 years, whether or not they had a recurrence (overall survival) compared to 87.7% of the women who didn't get adjuvant Herceptin.
This difference in overall survival wasn't significant, which means that it could have been due to chance and not because of the difference in treatment."
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I'm sure that Barbara Bradfield is happy with her decision to take Herceptin.
http://her2support.org/community/member-stories/216-barbaras-10th-anniversary-page
And, keep in mind, WOM is stage 3.
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i just have to weigh in here with my 2 or 3 cents...being one who combined traditional (BMX) with alternatives after refusing AIs...which i would NEVER say is the way to go for anyone else but me...I am not up to playing god. what is right for me may kill another or visa versa
if everyone who ate healthy, avoided toxins, etc was protected from cancer, there would be far fewer on this board then there are....it makes sense to eat well and live a healthy life, but it is not guarantee that one will be cancer free
suzanne somers had radiation along with a lumpectomy- important fact for folks to know I think- nobody else really knows what treatment she had but that is what she admitted on-air to Larry King back in 2001...
this is a great forum filled with many inaccurate statements...i just hope all take everything they read from everybody with a grain of salt.
i know a bit about a lot of things and I will only offer them as my opinion- to offer them as fact is wrong in my eyes. i can only share what I know and always say, subject to change. wishy washy? nah, realistic is all.
next week i will be at the biggest gathering of scientists from both big pharma and the public sector - it will be interesting to say the least in light of my diagnosis last october...i like hearing it from the horse;s mouth before it gets to the doc's ears...these folks tell you like it is...be it "natural" protocols or traditonal or just about to get released on the market....
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Herceptin works. period.
i always find it fascinating that some women here like to rain on others' parade while simultaneously making up the science. Now that's multitasking.
Susieq, I've sent you a PM.
janyce
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I'm not so sure it's about how easy or difficult chemo may be ... but more about what will get you the best survivability. One can get dramatic tumor response with chemo ... but most times not more survivability.
In my case, I was dx Stage IV in '07 and would've been lucky to get 1 year to live. I wish I had known, when I was originally dx in '99, what all I know now. I don't think I would've chosen chemo/radiation, much less the stem cell transplant I had. Not even sure I would've had the mastectomies ... yes, two of them. I was Stage III at dx.
I totally believe there are times when chemo is necessary, and I'm in one of them right now. I was hospitalized, in April, with inoperable mets all in my abdomen. Was damn near put in hospice. But I agreed to weekly taxotere and faslodex. Cuz otherwise, I was done. So that's what I'm doing right now, but I also have an amazing energy healer. He worked on me a week-and-a-half after my first chemo, and I've been flying high ever since. Getting stronger, energy and appetite improving, have gained 24 pounds, and feel great. Chemo typically doesn't do that to me, so I can only believe it's the energy at work. It has done it before and I think it's doing it again.
If you really want to keep it natural, you still have time to do so even if you are Stage III. Hell, I stopped really believing in chemotherapy while I was doing it. Spent the next 8 years learning how to defend myself. Good thing, cuz it returned and now I was put in the position of putting my money where my mouth was. Still declined chemo and found other ways to do things. If anyone is really interested in evidence-based alternatives, there are a few other good sites out there like the CancerCured Yahoo group and there's a Yahoo group called BreastCancerThinkTank.
If you really want to do alternative, don't let them scare you into chemo. It can be done. But if you feel peaceful with chemo, then go for it. Only YOU can decide what is right for you. Do your research and be sure you have someone guiding you if you go alternative. Don't take anyone's word for it ... not even your practitioner. Do your own research and, if it doesn't feel right, don't go there.
xxoo
Melissa
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Elmcity,
So you're accusing BCO of "making up the science?"
Do you have a reference that contradicts the 2011 BCO reporting? We'd love to see it. Thanks so much in advance.
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Luan:
I always LOOOOOOVED your signature line. I never tire of it.
But now I don't know what I like most: your tag line or your pictures.... Beautiful...... and thank you.
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@mollyann: no, i don't need to post articles. you have made up your mind. why try to convince you? i mean, i'd love to have you debate my oncologist, but some dreams just don't come true.
there's a wealth of data supporting the efficacy of Herceptin.no one touts it as a cure, simply an effective tool against HER2+ cancer.
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Mollyann and Belinda -- the article on BCO is the same article Belinda linked to -- but left out of the BCO synopsis is this very important bit of information:
"But while Herceptin patients in the four-year study experienced longer disease-free survival times than patients in an observation group taking chemotherapy alone, the overall risk of death was similar between the two groups.
"Gianni attributed this to the fact that 52 percent of patients from the observation group crossed over to receive Herceptin treatment midway through the research because of the drug's impressive early results."
In other words, the survival stats are not a head-to-head comparison between a herceptin-group (89.3% alive at 4-year follow-up) and a no-herceptin group (87.7% alive at 4 year-followup), because half the "no-herceptin" group took herceptin after they completed their year of random assignment to "no-herceptin" and before 4-year follow-up -- so at 4-year followup, who's to say herceptin didn't contribute to their survival?
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I remember this well because I was going through treatment at the time. When i was diagnosed in late 2004 I was terrified that my tumor was her2+ because the only way to get herceptin at the time was in a clinical trial, with a 50% chance of being in the control arm. Back then, her2+ cancers were considered the deadliest (because of herceptin, that perception has changed). So my fear was that I would have one of these deadly cancers but be denied that one treatment that might be effective in treating it. I was relieved that I was her2-, and then very happy when the trial was opened and herceptin was offered to women in the control arm. They actually offered it to women who had been in the control arm going back at least a year. It was a really great, exciting thing.
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http://www.cancer.gov/newscenter/pressreleases/2005/herceptincombination2005
Here were the results of that study. 33% reduction in the risk of death.
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elmcity, where did you get that I had made up my mind? I just showed you the most recent evidence. No one wants Herceptin to work more than I. My dearest relative cannot get her insurance company to cover it.
AnnNYC, yes there is confusion when they start to include some treatment to the controls. I keeps researchers/drug companies from ever testing the drug as passing or failing. This went on with Arimidex also. At the end of the day we have no clear cut evidence of overall survival benefit. So you roll the dice one way or the other.
To people who demand evidence based medicine, I always say, okay show me the evidence. Most of the time there is little survival evidence and a lot of opinion. But I'm open to being persuaded of anything.
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Member, that study you cited has whiskers on it from 2005. Read the HERA update 2011.
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Mollyann, I don't think it's just that "including treatment to the controls keeps researchers/drug companies from ever testing the drug as passing or failing." Herceptin did so well in the 2005 study that it would have been unethical to deny its potential benefits to the control (chemo-only) group. So now, at 4 years follow-up, with half the non-Herceptin group having taken Herceptin, there's basically 90% survival.
In my opinion, it would have been really mercenary the other way around: if a drug company put clear-cut "proof" first, and denied Herceptin to the control group for 4 more years in order to get that "proof." But hospital/university ethics committees don't allow that (thank goodness, in my opinion).
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Yazmin, u,re very welcome, i really enjoy doing this and discovering all that,s out there on the net. Pretty amazing
Melissa ! Where have you been hiding ? Please share or pm me on what you have been doing, am most interested in what you have to say
My onc said TAC + rads + Tamox it is. So be it, I said. Not even a year post rad, had a visit with him today, i,m having to go for a brain scan and he has instructed me to stop Tamox for 3 weeks. If brain mets should be found, what the f*§&¥ did the chemo and rads accomplish ????? Just one year of pure hell !!!!0 -
AnnNYC,
The ethical platform ground is always defined by the current consensus. 15 years ago it would be considered unethical to deny chemotherapy to women who NOW are prescribed only hormonal control. What was an ethical mandate then (chemotherapy for a certain subset) is considered unnecessary now.
One of the oncologists here on the BCO advisory committee was very forthcoming about how oncology works. According to him, they get a premise, "the thinking," he called it, and try it out until it fails or something better appears out of the trials.
The procedure is, they adopt guidelines until those guidelines change and they find some other strategy improves survival. It's not as easy as some here claim, "this works" or "that doesn't work." A lot of therapies will get FDA approval even if they blow out your kidneys to buy 4 months more survival.
As, I said, I have no interest in being right. My interest is only getting the (available) facts straight.
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I pondered the Herceptin but was so against chemo and I couldn't get just the Herceptin. In hindsight, I'm convinced I made the right decision but it's not the decision for everyone. We all have to decide based on our stage and circumstance. Sometimes I felt maybe I missed out on a "wonder drug" because they wouldn't give me one without the other. However, when I see these studies, I'm convinced I made the right decision...and thank God, I am NED today. Because I have seen other discussions from WOM (on another forum), I know she has grappled with the same issues. I just feel uncomfortable with "studies" as they can be made to show so many different results. I just research them and do what feels right to me. Those of you who have accepted Herceptin and feel that it's helped you, then it has. That's half the battle...to believe in your therapies. So I celebrate all who are NED. What a great feeling! I didnt mean to start a battle, I guess I should have PMed her.
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(((Luan}}} Let us know how you are!!!
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25% risk of recurrence in 2009 study. My guess is that by 2009 women diagnosed at a much earlier stage were given herceptin, and because their survival rate was already so high, it made less of a difference. In 2004, when i was hoping for the clinical trial if I was her2+, it was only open to women with positive nodes. In any event, the benefit of herceptin has been shown over and over again, its really silly to debate it. Its one of the few real wonder drugs and women had to fight for it.
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Molly Ann,
You are mistaken. Herceptin has shown a survival advantage. The numbers and references are posted much earlier on this thread.
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Orange1
Please check the most recent report on BCO
http://www.breastcancer.org/treatment/targeted_therapies/new_research/20110301.jsp
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Again, the "BCO says" synopsis of that study is misleading, omits the important fact that half of the "control" group ultimately took herceptin, so that survival comparison of the groups is not really comparing "herceptin" versus "no herceptin" -- and includes a boilerplate, Wikipedia-style definition of "not statistically significant" that appears nowhere in the actual research report and should not be understood to mean that herceptin confers no survival advantage.
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Molly Ann, the link you provided shows the results of the HERA study. In this trial Herceptin was given after chemo, not with it. Other trials have demonstrated better efficacy when chemo and herceptin are given at the same time. Because of this, the standard of care is now chemo and Herceptin given together.
Google BCIRG 006 3rd interim analysis. The first hit should take you to a PDF with a description of the study and results. I have extracted the data and posted earlier in this thread.. Another large pair of studies also showed survival advantage for herceptin given concurrently w/ chemo (Often referred to the "Joint Analysis Studies". The links for the "Joint Analysis Studies"are also posted earlier in this thread (by Beeb)
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