Survivors who have used only alternative treatments
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Ann,
I have sent you a clarification via PM. I am apparently offending someone by saying anything about stage IV forum subject matter organization.
If anyone has ideas on how to organize the Stage I/II forum, I am sure you would have a lot to contribute - regardless of stage.
In fact: if you want to come over and help me pick the right towels for my bathroom, I am open to new ideas of decor.
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Wow, this thread has gotten hostile...
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sam52,
just to clarify-- my mother is going through theraphy-- but not the kind of theraphy that will give her a painful death.
when I say untreated Her2+, I meant we have not really have come to a point on how to treat Her2+ using alternative approach---or even the conventional approach (using Herceptin-- which according to MOC-- gives a patient 50% chance to fight back on the Her2+ receptors).
she is however, being threated for her ER+ (without Tamoxifen and without the removal ovaries) using I3C/DIM by a registered endocrinologist specializing on women's cancer. she is being monitored by conventional doctors (oncologists) using less invasive diagnostic tests such as ultrasound, thermography, hormone metabolic tests, tumuor markers..
we have to fight our way through the system because it always surprise them why we go for diagnosis and yet do not accept their conventional treatment plans..
I am not giving up on Herceptin yet and the possibility that some day one oncologist would agree that she try Herceptin without the chemo and rads.. I am hoping that the oncologist we will be meeting on 4th may-- is this oncologist.
oncotype test-- yes we will try-- if they still have my mother's tumuor samples frozen in their lab. (someone from this thread told me they usually keep it for years--- see there is something I have picked up from well meaning conventional girls).
just do not shove your conventional treatment plans to us--
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poptart, you wrote:
"...Having lumpectomies (4 or 5) for what was either atypical hyperplasia or in situ over at least a 10 year period. Whatever it was she was told she was going to get breast cancer years before she did, but she still barely did anything. When she finally got idc, she got one mastectomy, then eventually another .... "
I know how you feel. It's that "What if" questioning, and it will be with you for ever, I am sure. You feel your Mom may have lived even longer if adjuvant chemotherapy and hormonals had been an option for her at that time (if I understood you right).
That's exactly at the center of the debate over today's treatment choices, and right here on this forum. Would your Mom have fared even better if she had had....say.....adjuvant taxol? For sure, as Athena pointed it above, it is undeniable that chemotherapy has demonstrated its worth in terms of life-extension. The debate is about adjuvant treatments, especially adjuvant chemotherapy (I am talking about all strong treatments applied "preventively").
However (and please forgive me if you really don't want to hear this at all): Is it possible that keeping the strongest treatments for later, at a time when she really needed them for life-extension was actually the best option for her and for many others?
I have read a post on this forum from a woman whose oncologist told her something like: "...Let's keep the big guns for Round 2...." I believe that's what we are debating here, brandishing different studies and statistics from our researchers and treating oncologists.
I would LOVE to be able to be sure that adjuvant treatment extends life. But the fact that the "standard of treatment" keeps changing means that there is no certainty. When I was diagnosed in 2006, I went through 5 out of 6 rounds of one of the strongest chemotherapies available: TAC. On my 5th round, I discovered through a second opinion from another well-known oncologist, that the standard of care was changing right at that time: He explained that my tumor-type (ER+,PR+, HER-) was no longer believed to benefit from chemo, after all.
And what did we just hear from SABCS 2011 in San Antonio? That women presenting only 1 or 2 lymph nodes may no longer be automatically put through chemo, because.... it is now becoming clear that does NOT make that much of a difference, after all.
Of course, I perfectly understand that one makes the choices that one has to make with the protocols that are available at the time one is going through treatment.
....But to go back to your Mom, would she have benefitted from the adjuvant treatments available to us today?
We keep wondering. And so do our scientists.
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hi britchick,
am not sure if sharing our experiences in this thread will even be safe from ridicule. so what is the point? I have shared some of it on page 30- if you would like to back track.
most of the time you are talking as if you are in front of a mirror-- you are telling me things you have done yourself. whatever facinates you about conventional medicine-- that you are not skeptical and do not even give us to share our stories-- even if the author herself (WOM) is asking for it. even before I started posting on this thread, WOM has made up her mind, even before I started posting - she is 100% sold in pursuing the alternative path-- and she is just looking for support for like minded indviduals.. thats what I gave her
you, thenewme, LtotheK, postpart -- all you did is pick us apart-- almost telling us that we are downright stupid for rejecting what you have accepted .. you are the ones shoving your ideas on us--- as if you are doctors as well... the fact is all of you are even more insensitive and dismissive than all the doctors I have met.
MOC has changed a little bit though-- for some reason she has given me a break and was off my back for a while.
Why dont you all go back to your conventional forums-- if you do not have any uninsulting remarks to make?
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one more britchick,
can you site at least one post-- that I shoved our approach on you?? specially to you? I do not even know you---why whould I advice something to someone I do not know..
please do not vent all your frustrations on me. I know BC is very frustrating.. being part of a BC family is already stressful as it is.
people are warning us about alternative quacks-- and we have openly acknowleged their well intended warnings... but to call us insensitive-- appaling-- stupid-- is really beyond what I can tolerate.
I posted the entries from Shin's blog to warn everyone about incompetent doctors who will probably wrongly execute-- medical procedures on women like Shin who were in a particularly vulnerable situation..
it's like warning someone crossing a busy street-- to take care-- coz a speeding truck might hit them--- and now I get bullied for being the messenger.
I warned-- I did not shove anything -- specially to you!! who the hell are you?
if Shin's blog is really getting in to you enough to make you angry-- go ahead be angry with the whole Breast Cancer disease, including everyone who makes money out of it conventional, alternative, complimentary-- includign that organic store near your house.. go ahead and blame everyone!
but don't just vent it on me!
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nanay wrote: ..."I posted the entries from Shin's blog to warn everyone about incompetent doctors who will probably wrongly execute-- medical procedures on women like Shin who were in a particularly vulnerable situation.."
Sorry, but you're once again incorrectly interpreting what happened to Shin when the chest tube was placed and unjustly calling the doctor incompetent. It wasn't "wrongly executed". When a patient presents to a doctor with a liter of fluid in the lungs, you can bet they're having a hard time breathing. The proper procedure is to drain it unless the patient refuses to consent to it. I can assure you from witnessing hundreds of chest tubes being placed for the same and similar reasons, that it's a rare patient who will refuse since not being able to breath is a horribly frightening situation and people become very panicked..
Have you ever seen someone die that way Nanay? I have, more than once, and it's a miserable way to go. Just because the tube had to be pulled back a few inches doesn't mean that the doctor who did it was incompetent or that it had anything to do with her eventual death. Sometimes they're not in far enough - sometimes too far. Either way, it's easily corrected and having to do so sometimes is part and parcel of putting in chest tubes.
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alright mariekelly,
let us go back to Shin's blog and dissect everything she posted there..
by the way, I know that fluid needed to be drained by using chest tubes,,,
1.) she said they were supposed to drain only 500 ml at one go, and not 1 liter in one fell swoop..
how can you explain that?
2.) the sudden release of fluid shifted organs about and moved the heart, hence the tight feeling of suffocation on my sternum and chest..
what is so normal in this situation that she died after a few days of describing this untolerable pain...
read on..
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Nanay, I haven't changed that much. I just think people should remember that you have a strong-willed mother who has refused treatment. However, i think you still have a lot of inaccuracies in your posts and aren't very clear and get very defensive. PLus this whole thing with Shin's blog is a bit grotesque. You are using it to argue that conventional doctors make mistakes but you aren't arguing with anyone because no one said otherwise.
Terminating treatment and bringing in hospice -- the issue with Shin's death --is an ENTIRELY different issue than not pursuing treatment in the first place. many of us who have cared for someone who has died made this decision, and it wasn't that we were rejecting treatment, it was rather that we were recognizing that the time to fight was over and it was time to switch towards planning for a comfortable death. This is NOT the situation anyone if facing at initial diagnosis.
And the way you keep repeating the details of her death is truly unnecessary and feels almost like exploitation, though I suppose if her family put it out there on a blog privacy isn't an issue.
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point number 3.) she did not name the infection, but I know there are infections (e.g. pleurisy-- that caues sharp pains-- in the same way Shin described)..go ahead and google pleurisy) which is why she was given antibiotics and also the reason why biopsies were performed in her lung
point number 4.) pleural biopsy is usually done to diagnose either an infection or a lung cancer -- so at the point of death the doctors are not sure yet if it was lung cancer...so concluding that it was the cancer (lung cancer presumably) that killed her-- is not correct!
poing number 5.) she was given anesthesia (Overdose of anesthesia-- that almost killed her) -- as part of a procedure called thorantecis..
all 3 points are done when one has sympoms of infection such as pleurisy
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hi MOC,
Shin has written this in her blog-- that she has offered her body and her story to anyone who is researching about breast cancer. she knows for sure that this will be analyzed and for a good reason.
it is probably so uncomfortable for you-- even to the point of saying it is grotesque,,
but please analyze the points I enumerated-- and honestly tell me what your opinion is..
marykelly
you are implying that I do not know anyting about pleural effusuisons and infections of the lung..
some of you probably have witnessed more painful deaths.. but how many more painful deaths do you have to witness for you to see what I am seeing?
are you really completely ignorant? or just trying to make this go away-- as you know you might end up this way?
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my mother will not reach that point of making a decision between painful and not painful death-- because we will not allow her to reach that point..
as I said-- she will never have to "survive" the ordeal of such treatments-- because we chose the non-agressive path.
we chose quality of life over quantity of life (in Shin;s case-- she chose quantity but she actually lost both quantity and quality of life)
its so sad.. and right now am crying for Shin... and many others who will experience this painful death because they are ignoring the signs of incompetence.
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marykelly,
its okay if you decide for 100% conventional medicine-- if you do agree that one small mistake of an incompetent practitioner can kill you and that you should be warry of them-- in the same we are all warry of quacks..
MOC,
you said no one is saying doctors do not commit mistake.. marykelly is the classic polyanna who believes doctors do not ever commit a mistake..
that they did not commit a mistake in Shin's case.
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That's exactly at the center of the debate over today's treatment choices, and right here on this forum. Would your Mom have fared even better if she had had....say.....adjuvant taxol?
Most likely she would have done better, though there is no way of knowing and taxol wasn't an option.
However (and please forgive me if you really don't want to hear this at all): Is it possible that keeping the strongest treatments for later, at a time when she really needed them for life-extension was actually the best option for her and for many others?
It makes no sense to me that chemo would be so much more effective once cancer has ravaged the body rather than when the cancer is microscopic. I thought this was the whole point of dose dense chemotherapy, strike at the disease when tumor burden is low. I assume my mother had adriamycin. It really worked for her when she had extensive disease - so why why wouldn't it have worked for her when she had microscopic disease. Maybe someday when more is known about breast cancer, it will be possible to take the conservative approach to early stage invasive bc, but as far as I know, waiting to use effective treatments until cancer spreads is just ridiculous. If my doctors had told me that they wanted to wait to treat me, there is no way I would have continued seeing them. As it turns out, my doctors maximized my treatments. I had both chemotherapy and radiation (chest wall, axilla and im). I was node negative and thoroughly staged with pet/ct/mre (even threw in a pelvic mri) - all normal. (This is one thing that was not clear from WOM's posts, that is, whether she had any additional diagnostic tests).
As far as standard of care goes, I don't think my mother had the standard of care even for her time. I am the youngest in my family so I do not know as much about it as my older sibllings. My mother had nothing besides surgery, despite having bilateral invasive cancer (at different times) and large tumors. I think by the 70s and early 80s there was more than just surgery, even for early cancers.
I have A LOT of cancer in my family (and also a lot of longevity). I know indisputably that anyone in my family who has had chemotherapy or radiation has responded extremely well to it. I am BRCA negative but my doctors are pretty sure I had some heriditary type of bc. Thank goodness I have doctors with good sense.
But the fact that the "standard of treatment" keeps changing means that there is no certainty.
What? Who is talking about certainty? I think I read somewhere in a previous post that people were going to wait until a treatment is xx% effective before using it. ??? Maybe breast cancer will be curable in 20 years or 30 years or whenever, but people diagnosed today have to go with what is available now. For some perspective, my mother's grandmother died of bc young. This would have been aound the turn of the century (19th to 20th). As far as I know, she wasn't treated as surgery would have been it for her. Do you think she would scoff at the opportunity to have her cancer treated earlier, to have the possibility of a 50% decrease in cancer mortality, to have an extra 5 or 10 years, to have her pain properly managed? What we have is not perfect, and I think nothing less than a reliable cure is acceptable in the big scheme of things, but for goodness sake, why not be open to being helped in the present?
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here is another one-- shoving her treatment approach to a thread about alternative approach..
being disrespectful to say the least-- "makes no sense to yo"-- makes sense for us..
we are not asking you to take our way--- go ahead and take everything the doctor tells you to take.. for all I care!
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Yazmin treatment is changing because they are learning more. Not all hormone positive cancers and 1/2 nodes don't get chemo. This is why they do the onco test. Only some, usually the lower grade don't do well with chemo (unless HER2+). I'm sure treatment changes with alternative too as they learn more.
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One of the things I've learn on this journey is to be careful of how what your read effects you. I was more scared to take Anastrozole than I was chemo. Chemo was for 3.5 months and it seemed most people said it was doable, not as bad as they thought.
When I read about all the SE from Anastrozole, and that I would have to take this drug for 5 years I was frightened that my life would suck: age instantly with aching bones, dried out skin and thinning hair.
I've been on Anastrozole since March 1st. My hair is growing from chemo nice and thick (including spots that had thinned before chemo). No new wrinkles, no aching bones even the muscle stiffness from chemo are 95% gone. I have learned that most people don't get a lot of these SE.
I could also do a list of things that I worried about doing Herceptin. Again most people don't get a lot of SE. For me I do get a nose bleed 1 week after infusion and some of my fluid retention might be from Herceptin. Even chemo wasn't that bad. Heck I never even got nausea but I know that is odd.
My point is when we read about people having issues we can't assume it is the norm and it will happen to us. Yes these serious things do happen but not most people. I'm so glad I did not let other people's experiences scare me out of treatment that is most likely prolonging my life. I'm not trying to convince people to do treatment but don't let anyone "scare" you into not doing it.
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There was chemo in the late 70s and early 80s. The mother of a close friend of mine was treated back then and had five years before her recurrence. What they didn't have was tamoxifen and I believe it would have saved mr friend's mother's life as her disease progressed in precisely the way that is typical of er+ cancers.
Marykelly did not say that doctors don't make mistakes. No one has ever said that. You are fixated on this and on this woman Shin and you aren't getting what happened to her or what the issues is. She did not have lung cancer, she had metastatic breast cancer to the lungs, and other organs. She was at the end of her life before the doctors even tried to drain her lungs. had they not drained her lungs she was have died of that. So the issue was, should they have taken these measures or should they have proceeded instead to hospice care so Shin could have lived out her remaining days in peace. The family regrets pursuing those measures and I can understand that. It is very difficult to say enough has been done, lets turn to hospice now. but that it not the issue here. WOM is not facing end of life decisions.
Shin was dying regardless. Thats what you don't seem to understand.
I have never understood this idea of withholding treatment in case you need it for a recurrence. It comes up every once in a while here and I don't get it. The life expectancy once you are diagnosed with mets is 2 to 5 years. Women are increasingly living longer than that and i am hopeful that women diagnosed today will live until there is a cure. But the vast majority of women diagnosed with mets will die from breast cancer. Chemo/radiation/hormonals have a shot at eliminating cancer cells from your body when you are diagnosed at an early stage, but not once you are metastatic. So why wouldn't you take advantage of these drugs when they are at their most effective? Don't get it.
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maybe just for the lack of better word
you think we are stupid for rejecting chemo and rads. and we also think you are equally stupid for accepting chemo and rads.
I am done with this thread. anyway WOM is not in sight.
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lago, i had the same experience, I was more anxious about arimidex than anything. I switched to it after five years of tamoxifen, with great dread. And as it turns out, I feel great. I'm coming up on one year on arimidex and I am having no problems at all.
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Perhaps under all the layers there are answers......the prevailing thread is that very few went totally with traditional or nontraditional methods. The majority have used and are using a combination of treatments to deal with this disease. There is no easy, black and white answer. But bottom line it is what you and yours decide is the best route to take.....because it is your journey.
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Just a final few comments from me to Nanay before I close my eyes to this thread -
you said "...marykelly is the classic polyanna who believes doctors do not ever commit a mistake..
that they did not commit a mistake in Shin's case".
First of all, I'm definately not a pollyanna with eyes closed to medical mistakes. I work in the medical field - I know mistakes are made sometimes but I also know that modern medicine does a lot of good and I've seen things close to miraculous. Did you happen to notice that I refused both radiation and hormonal therapy? I wouldn't have done that if I was strictly a die hard conventional treatment guru, now would I ?
Secondly, taking off 1 liter of fluid is procedurally normal. Just FYI - the limit in one sitting is generally 1.5 liters, although sometimes even more is taken off depending on the circumstances. So taking off just one liter is not the issue you're attempting to make of it.
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Okay, now I think that Dave, Luis and Nanay are the same person....
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My views are very similar to Athena's but I don't feel pressure to change. I accept that others see things differently to me and thank goodness we aren't all the same. Then again, I guess I'm weird. I don't believe people are right or wrong, just different. Diversity is necessary for progress. It's a scientific fact.
I love what you said MOC, "Women are increasingly living longer than that and i am hopeful that women diagnosed today will live until there is a cure."
That's my hope too. Here's to Peace, Love, Compassion, Hope.
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If there are folks here who think people who do conventional care are "stupid", their opinion is baseless. It's a hunch. Where are the links to studies that a Stage 3 patient would fare better without standard care? That has never been substantiated,and that is what we are talking about.
The conventional care folks are using statistics. I know, I know, they are so wrong, it's a question of whether you get it or don't...no one has ever posted WHY cancermath, for instance, is questionable. Links to studies and essays, please.
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Actually cancermath has a disclaimer:
"Note: The tumor size and/or number of positive nodes entered exceeds the values against which the calculator has been validated, 50mm and 10 nodes respectively."
So if you have more than 10 nodes infected and/or a tumor larger than 5cm the results are questionable. It also doesn't include results for treatment with Herceptin (too new a medication).
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Lago, I would think that actually substantiates an increased need for aggressive, standard treatment. We know, for instance, that tumors are shrunk with chemotherapy.
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nanay, if you're still here, you wrote:
just to clarify-- my mother is going through theraphy-- but not the kind of theraphy that will give her a painful death.
I sure hope that regardless of treatment type chosen, that your mom's death--when it's her time--is not a painful one. I hope that for all of us. Granted,"therapies" can hasten death. They are not without risks. But they can improve quality of life, too. And there's not a one of us here who doesn't want a good quality of life, or quality end of life care.
I hope your mom's therapy does not result in her death. I hope hers is a cancer that would need very little of anything to allow her to live another twenty years! If it doesn't, I hope you will have lots of good medicines to keep her comfortable. I am NOT trying to sound snarky.
We make our choices based on our values. I've said it time and again.
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I hope I would not offend anybody as English is my second language. From reading all these posts I understood nanay's mother decided to go with quality of life not quantity. She is in her sixties and even if her cancer does come back she would still have several years to live the way she and her family decided was best for her.
In some cultures (mine) women turning 60 is considered old. I know for sure that my mom and most of women her age from my born country would not bother with chemo at that age. In my country 68-70 is age when nobody would say he/she died young.
Now, here is different. People in their sixties are still working and that is considered normal, they are traveling and enjoying life. Different cultures.
I can see her point of her mother going alternative way.
I was 42 when diagnosed and doing everything I can to be around next 30 years.
I think age is very important step in exploring Tx options.
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Nanay, I reported two of your posts. They are increasingly hostile and I think your retort to MaryKelly borders on hate speech. Your final line is : "are you really completely ignorant? Or trying to make this go away, because you might end up this way?"
That statement is hostile and cruel.
In another post, you call her a pollyanna. Name calling.
I'm sending you a PM advising you of this, in the very small chance you actually have finished your business on this thread.
Grow up.
janyce
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and I think Digger is right, btw
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