Survivors who have used only alternative treatments
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Athena I agree that HRT reduction has had some effect. It is mentioned on the ACS site.
"After increasing for more than 2 decades, female breast cancer incidence rates decreased by about 2% per year from 1998 to 2007. This decrease was seen only in women aged 50 or older, and may be due at least in part to the decline in use of hormone therapy after menopause that occurred after the results of the Women's Health Initiative were published in 2002. This study linked the use of hormone therapy to an increased risk of breast cancer and heart diseases."
As we know chemo is not a cure but it does buy time… many times a lot of time. Life is just time anyway.
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It's very important to correct a misperception - suepen (and if I am misinterpreting you, forgive me): a person who questions conventional therapies for cancer is not necessarily arguing in favor of alternative therapies. Big, big jump to make. We have to get out of this either/or mentality. Big jump to make, too, that questioning conventional therapies means one agrees with WOMs approach. I just don't think I have the right to impose my will on her.
What would I do in WOMs position? My first answer: conventional therapy - just not necessarily everything the doctor says. I would tailor treatment to my needs, medical history and comorbidities. Knowing myself, I would probably have gone with Herceptin sans chemo if I had been Her2, even though it would have taken some doctor hunting. I might have had to do loads more reseach before deciding on a length of course - I wouldn't have settled for one year without more research first.
Other than herceptin, I would have taken the same course as I did with my cancer: a combination of conventional treatments and complementary (not alternative) therapies but rejecting some conventional treatments that I have very little faith in and for which there is scant evidence. I call my smoking cessation complementary therapy. Surgery would be conventional. Complementary therapy is in addition to - not in lieu of -conventional therapy. Tamoxifen was conventional therapy (sorry WOM - I can't remember if you are triple-neg), as is Zometa. Complementary therapy I chose besides smoking cessation was vitamin D3 supplementation on a daily basis as well as Coenzyme Q-10. I consider other habits complementary therapy: I no longer every buy eggs and milk that are not organic to reduce hormones. This will not eliminate the menace, but I am walking a sensible line between reducing certain potential threats without eliminating things I love.
I picked and chose conventional treatments based not only on which ones I had faith in given the research but also which ones I was likely to do well with based on my personal history. I have a history of surgeries and always do very well, so surgery happens to be one therapy I always prefer if it is an option. Most people avoid surgery like the plague. Not me! If ever I am stage IV, that will be my therapy of choice if/when possible. I will also insist on a surgical biopsy, BTW. If I could protect my brain I would do chemo, because we know that chemo does kill cancer cells, so it is useful to stem progression for Stage IV. If I came back with mets still as er+ pr+ I would be advised to do hormonals. But I know now that I can't do them. I would rather die first. Two years ago, I would have said "of course hormonals first and for as long as possible." Not with what I know about my body today.
So it really is a very delicate balance and we have to be careful in respecting each other's choices.
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Oh.My.Gosh. Nanay, I won't even waste my breath trying to have a reasonable discussion with you, but I'm absolulutely floored by your post about our stage IV sister's journey. There are plenty of testimonials out there for the successes and failures of both conventional and alternative treatment, but it's obvious that you're wearing your blinders, despite your claims of fact finding, etc. I don't care what you believe or what you choose, but yours was one of the most insensitive, cruel, and just plain ignorant posts I've come across in a LONG time.
Dear Apple, your children are gorgeous in their garage sale shoes! I love their candid expressions (are they as fiesty and as they look?
) and I can imagine how much strength and meaning you derive from them! Thanks for sharing them with us! 0 -
Member, you wrote again:
".........Herceptin has improved survival for women with her2+ by 50%....."
But wornoutmom herself had already clarified that statistics, above:
She wrote: "...............I would love to see 50% increase using herceptin but in fact the 50% increase is only in reference to 50% more taking into account those who survived the first chemo stats........."
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lago: chemo does indeed buy time. That is why even though I did not want it as an early stager, for Stage IV chemo may be an excellent choice in many cases (not in many others) because it does kills cancer cells in most people and in some it works with relatively little backlash. So to prolong life, it is a treatment to consider. It just has no proven curative value for large organ cancers (it does cure a small number of other cancers).
Radiation is also something I like for Stage IV because it targets actual visible lesions. I would also try hyperthermia. IMO, the panorama of acceptable treatments really changes at Stage IV vs. when you are treating in the dark.
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thenewme,
don't worry I would not waste any second with you as well. as the saying goes, this is a public forum. you can post indescriminately -- all thing agains alternative even if WOM's question is "Survivors using alternative approach"
now am going to post about painful death because of conventional approach..
this is what everyone needs-- the truth! no matter how painful it is.
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I am 100% convinced that the alternative approach is working for my mother for her to live with quality of life..it has been 1 year and months since the diagnosis.. 1 more to go-- and she will be breaking the 2 year average for most untreated Her2+ cancers.. meanwhile we will enjoy our precious life together (thanks for Shin for the hard lessons learned she painfully documented in her blog)
meanwhile I am going to continue monitoring Herceptin ,,, if it ever improves from 50% to 90% we will probably take the chances..we will also continue monitoring her through non-invasive diagnostic tests such as ultrasound , thermography, tumuor markers, metabolic hormone test
probably Shin is correct that the cure will be found in this decade.. so for now-- we will work on QOL and possibly trying to extend my mother's life for another decade instead of the 2 year average for Her2 agressive BC..
without that 90% stat on Herceptin -- I would not subject my mother to the torture that Shin subjected herself into..
if you are warning natural girls about alternative quacks--- THANK you very much. we will take it on with an open mind and heart.
don't you think you should thank natural girls, for warning you about incompetent conventional medical practitioners as well?
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"I just don't think I have the right to impose my will on her."
I consider it my moral duty to share whatever information I've learned along this highway so readers can do more research and be rigorous in their treatment debates.
Mamma always said changing peoples' minds is almost impossible. But at minimum, more professional opinions in this case aren't just warranted, they are a necessity. Time is running short,if I understand correctly, the original poster has already had surgery and the window is closing for conventional treatment options. There is no reason to close that door simply because additional opinions weren't sought.
Science hasn't proven without a doubt that chemo can help in early stage cancers, but they have a hunch. It's what the entire Tailor X trial is built around. At the Stage IV level, extension of life is usually only up to five years. I'm looking for way more than that!
When I said to my doctor, "Well, can't I just wait to see if the cancer comes back before I blast myself with this poison?" Her reply, "If it comes back, in all likelihood, the treatments are pallative, and you will not be able to live your life as you do right now."
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metastatic cancer is fatal (unless a bus comes along). Because one is in treatment does not mean the treatment causes death. It is best to avoid metastatic cancer.
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if one can that is.
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apple,
its seems that is what you wanted to believe-- that treatment does not cause death. because you are using conventional treatment. however, that was true on Shin's case, or you have to agree that the medical procedures/treatment were wrongly executed..
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Athena, i think your approach to your treatment decisions is commendable. You've taken into account the benefits and side effects of each and your own personal history and made your call. I completely agree with this approach. My concern is always with people who are basing decisions on misinformation.
Nanay, no one would defend quacks. Goodness, when did that become your argument? At first you were attacking the medicines but you've backpedaled and now its about quacks. We are all opposed to quacks. Not sure why this is an issue.
The benefits for herceptin will not go above 50% It is what it is and won't ever reach 90%. Perhaps another drug will come along that will, but this is doubtful. The benefits of herceptin are unusual. It is rare for a drug to be this effective against cancer. We can hope.
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Also, regarding complementary therapies, while I use them and they saved me on so many levels during treatment, there is huge debate around not only their efficacy, but also their potential harm. Just got back from a second opinion on my MRI diagnostic plan, and she recommended not taking supplements and vitamins over the 100% recommended dose along with Tamox. She said they will never have the research funds to investigate everything, from Vitamin D megadosing, to fish oil and their interactions with this drug.
I'm sticking with D because it does have a lot more evidence around it. But I am probably going to ditch the iodine, B12 and others in lieu of a multi.
I go back and forth, it's so difficult, but really, we have so much to learn in terms of complimentary care.
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MOC,
did I say that you are defending quacks? whoever said that is crazy!
I said you have to be warry of , beware of, avoid.. quacks (however you define it-- convenitonal or alternative.. AVOID QUACKS AT ALL COSTS!!
what am trying to say is-- I WOULD LIKE TO APPRECIATE YOU MOC- THAT YOU ARE WARNING ME-- TO AVOID QUACKS AT ALL COSTS.
and that you should also appreciate-- that I AM WARNING YOU AGAINST INCOMPETENT DOCTORS.
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here is the ideal scenario:
nanay: MOC, thank you for warning me -- not to listen to quacks
MOC: nanay, thank you for warning me - not to listen to incompetent doctors.
r
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I've been skimming this volatile thread with a host of emotions, but have little to add here except that I think Nanay is completely out of line to lecture Apple on philosophy/treatment or any of the above. I'm sure this will earn me disapproval from many quarters --perhaps, even, Apple's-- but someone with Stage 2 cancer has NO business lecturing someone living with metastatic disease. It's respect, plain and simple. the end.
The rest of us have NO IDEA what it is like dealing with Stage IV - I hope I never do, and can't predict the future. One thing for sure: I will keep silent when a BC sister living with stage IV offers her wisdom.
nanay, do the same. Respect.
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in that case, if Herceptin does not go beyond 50% then I would just wait for the next drug that can go beyond that 50%.
until then we are fine with our choice of QOL. however, I would still go to our oncologist and ask -- as he would be probably more knowledgeable than anyone of us anyway.
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elmcity,
respect. am trying.. believe me. I have even PMed apple.. to tell her I am sorry, as she seemed to be offended by some of my posts.
but we (WOM and I) has also been disrespected so many times in this thread-- but no one even bothered to say sorry.
we are just sharing our treatment plans and we are being ridiculed and even being tagged us stupid.
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elmcity,
did you see MOC and LtotheK -- lecturing us too?
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Nanay, thank you so much for warning me about quacks. It would not have occurred to me to avoid them.
I no longer know what you are talking about. But, whatever.
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how about warning you about incompetent conventional doctors?
yeah you sound confused...
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Nanay, I did.
I think it's sad that so many spend (likely) hours fighting with each other. Too much navel gazing, too much ego.
We are never going to convince each other on terms of treatment, and God knows we shouldn't. We are here to lend support, share experiences and insights, but as far as the big picture? Unlikely. Unhelpful.
I respectfully note that after six months on these boards, I see absolutely NO difference in the zealotry in conventional vs. "alternative" camps. In fact, I find the former group to be less open-minded. Again, just my opinion. And I blended complimentary (acupuncture, naturopath, reiki) with good old A/C-Taxol-Herceptin-radiation-MX-oophorectomy. And I say "good old" sincerely. I'm healthier today than before my diagnosis.
I stand by my original declaration that no stage 2 (or 3, or 1) sister should lecture(however gently) a sister living with stage 4. If you can't understand that, then - I have nothing else to say, really.
we are on this gorgeous planet today, ladies - let's enjoy it! to each her own journey.
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I'm not offended in the least.. just very concerned about WOM's decision. that's all.
It's almost laughable that the severity of one's disease warrants 'respect'.. It really shouldn't be that way, altho that is nice that there is a plus. heh
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I respect you, Apple, because you have cute kids.
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it is ludicrous, apple. i don't mean to talk out of turn.
this disease sucks.
i, too, am concerned about WOM's decision - because we do care.
okay, end of my involvement. Godspeed to you, WOM! I sincerely do wish you all success and good things. xo
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Nanay, I don't think you got my post, but Okey-dokey.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2799236/figure/F2/
This chart shows better response to Herceptin for HER2 positive and hormone receptor positive BC than for HR negative in the metastatic setting. The link to the article by an MDA team is above the chart. I only skimmed the article since it doesn't apply to me but it seems worthwhile reading it for those making decisions on treatment, conventional or alt, that still has a high failure rate.0 -
elmcity,
we are not as open-minded as the conventional camps? that is subjective, depending on which camp you are more biased on..
anyway, am glad you took the middle way.. just be wary of incompetent doctors as well as beware of alternative quacks (gotta repeat this again and again) as this thread can go as long as 275 pages and not everyone has the patience of reading through all the pages.. just the last page already sends me spinning..
we all mean well...thanks!
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Here we go again.....
"[Chemo] just has no proven curative value for large organ cancers (it does cure a small number of other cancers)."
"Science hasn't proven without a doubt that chemo can help in early stage cancers, but they have a hunch."
People, chemo has been around forever and has been studied six ways to Sunday. There is TONS of evidence that chemo is curative for some early stage breast cancers. The evidence is most clear in triple negative BC.
Trials have compared groups of women who did chemo and groups of women who didn't get chemo. Significantly more women in the non-chemo groups relapsed. Significantly more women in the chemo group stayed healthy, with no cancer relapse. This is proof, as best as we can get it, that chemo "cures" some percentage of women with breast cancer.
The link to the Lancet meta-analysis on how chemo improves "cure" rates (that is, the number of women who never have a relapse of their breast cancer) is posted earlier in this thread. PM me if you want me to send it to you directly.
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