Survivors who have used only alternative treatments
Comments
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Beeb75: I never meant to suggest we should not fund research for lung cancer; we should. But since we know exactly what causes most cases, maybe we could work harder to prevent it. There was an active thread about the brochure that stated that breast cancer is preventable; it is not, but for lung cancer, many cases are. Yes, tobacco is an addiction also. It seems secondhand smoke can cause cancer too, and a lot of kids are exposed to it.
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I think amazing progress has been made in the fight against breast cancer. With every drug that is researched and we take, we learn more.
apple, still alive today... and yes, dead sooner than not, because she started her fight at such a late stage. and yes, a bit concerned that misinformation spewed, can cause real harm.
Those who have the opportunity to sley this beast should.... by whatever means.
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To return to the question at hand, again. I just saw this link posted on a thread here with a similar theme -- regarding alternative treatments.
http://scienceblogs.com/insolence/2009/03/does_alternative_medicine_use_result_in.php
Sobering...for someone who had hoped there was some value to the alternative treatments out there. I'd encourage wornoutmom and others considering skipping conventional treatments to read this article.
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Please let's stop insinuating preventability vs. importance given to x or y illness. That is a slippery slope of judgement that can border on unintentional cruelty. How about all of those people who have contracted AIDS through blood transfusions, or who had it passed on by their parents or were raped. And, as was pointed out previously, not all cases of lung cancer are caused by smoking.
There is another thread in which many express outrage at what they perceive as being blamed for BC in an article written by this Web site's founder. Be careful when doling out blame unless you are willing to take it (although I did not read the Huffington Post article as offensively casting blame), AND do not forget that BC may very well be "preventable" - we just don't know for a fact. There are only associations and hypotheses. In infectious diseases, luckily that path of inquiry is relatively clear. But because it isn't clear in BC doesn't mean it isn't there.
Having said all this, I do nevertheless agree that if there is a certain disease, such as AIDS, that happens to be transmissible, you really can say, to some extent, that "prevention is the best cure," and education on prevention should take a central role.
I, for one, very much hope that per capital AIDS funding in the world is much larger than for Breast cancer. BC kills the patient. AIDS kills entire communities. There is really no scourge more disastrous to man than an infectious disease.
I find this conversation very interesting. For those concerned about the OT nature: we never stayed on topic. It just didn't happen. We tried and at times succeeded (and continue to do so, as posts discussing alternative treatment continue), but for those of you who have not been here since the beginning, this thread has always seemed to have a life of its own. It's somewhat frustrating, but we may as well enjoy.
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It is pretty agregious to suggest AIDS is preventable when the largest contracting population is underage women of color in third-world countries being sexually abused. AIDS as a gay disease is old-school thinking. Prevention is going to require a total retooling of the misogynistic power structure of the globe. Good luck on that one.
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AIDS is preventable for some, but not for others. The way in which you can get it varies strikingly and your degree of "complicity" or not varies from 0 percent to 100 percent. That is why blame is a waste of time. Funding for any disease should be based purely on the need to eradicate the illness and whatever that costs and not anything else. In AIDS, because we know what the mechanism of transmission is we can take educational steps as part of an onslaught against the disease, which also includes vaccines, treatment for the infected and, hopefully one day a cure. In BC, education has to play a much smaller role simply because the mechanism by which the cancer is gotten (I know there is a scientific word - it is at the tip of my tongue) is unknown. In the cancer world, education can serve to make people know that a lump is worth calling the doctor about, for example. But a more comprehensive education approach aimed at prevention should tread very carefully because we don't have the data.
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Sadly, infectious diseases may all too soon become killers and we will fear a simple injury in case it develops into septicemia and takes our life. We could have avoided this by not abusing antibiotics in animal feed and for the common cold. I'd like to know of one illness that is curable other than infections (that anti-biotics, anti-fungals or anti-virals can cure). Surgery can cure many things, and in some rare cancers or early cancers we can cure them. Vaccines prevent many serious illnesses but mostly cannot cure them once infection has set in.
Asthma, diabetes, arthritis, the common cold, skin conditions, malaria, Aids... The list is huge. We can treat them but not cure them so they remain at some level or return again.
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I can't believe not one jumped on the idea that I had a very insignificant BC and that is why I was given the bc pills. I was told I had a clogged duct and dispite more than one doctor seeing this lump I kept getting told to put a heating pad on it for pain with no investigation. During this period my obgyn perscribed me bc pills. 3 years later a second lump grew which they did take seriously and that is when I was finally told the "clogged duct" was never a clogged duct but in situ breast cancer. So with estrogen positive cancer in my body I was given bc pills!!!! So a great thing to learn from this is that don't assume your doctor is doing everything right.
I get that chemo/rad it the best statiscally proven but what I don't get is why people don't question this. We jump on the band wagon since it is the current data about herceptin and Her2 but we never look backwards. How many women with her2 were given chemos that were ineffective because they hadn't discovered her2 yet? If you go back then those women were told it was the most effective treatment and would have been told they were crazy not to take it. What about Avastin?? Do you think those women were told it had no effect in their survival? Remember this drug has scientific eveidence to prove it but low and behold they were wrong and in a 12-0 vote they had to remove it from the treatment of BC. I just don't understand why we fight as if this is the absolute truth. There are errors in science and we are surrounded by it but no one questions it... It just baffles me.
We are quick to say there are no stats on alternative. Great you are right but what I don't get is why we are not demanding such research to take place!!!!! We have natural things such a Vitamin C injections that pose no threat and yet we are not demanding they start studing this. Where are the studies to work on helping the side effects of those who are on chemo? Why are we not demanding they take these patients suffering into consideration. If that is CAM so be it but why do we sit back and say it is the best we have so do it. We know with out dispute that the immune system is the begining and end in the defense against cancer. Why are we not trying to boost the immune system of cancer patients so they have a better chance to bounce back? There are so many things that have no adverse impact so why not study this. I asked regarding this and my onc said well we can send you to a nutritionalist. WHY is that not a must. Meat rises estrogen but did my onc say you might want to avoid meat. No she wanted to perscribe tamoxifin or I can have my ovaries taken out. Missing that estrogen does have a role in preventing cancer as well and is important for other functions in our body,
The scan Nannay mentioned got feedback about this possibility of inaccuracies. Seriously and mamomgrams don't??? Why aren't we at least demanding research on this before we just dismiss it. Radiation is so dangerous that you can only do one body part in your life. They have similar testst that are safe enough to have as many times as you want. What I don't understand is why rather than learning about it do we just say oh it has not testing behind it. To me that says lets demand we research it and prove it is ineffective rather than ignore it. I would love to leave my daughter a safer treatment plan but that won't happen as long as we jump on the band wagon and assume what we have it the best. We need to test these things! Not just ignore them. There are chemo sensitivity tests out there that can tell you what exact chemos will really work you YOUR tumor. There are not tested so we ignore it. What we shoud see is even if it needs improvement why are women not standing up and saying we want this researched!! Most sit back and just take what ever chemo their doctor recommends and assume it works for them when the only factors are the stage and receptors.
I honestly laughed at the idea that alternatives are out for money. As if convention meds are not also governed by $. Did it really shock me that the person who reported the great effects of Hercepting also had financial funding by it's makers? How many know there is a higher incentive on IV drugs. Just be fair there is money to be made on both ends but the convention has a lot more of it which means more power.
I looked at the story and my first thing is that the woman did nothing but somehow this is lumped into alternative. There is a much higher standard we apply to alternative than to conventional. I notice people point out the difference between nanays mom and me in age. The most amazing thing is NOONE has asked me any specifics about me but jump in and tell me what I need to do. Did you ask if I have heart issues? No I have her2 so I need herceptin. Has it ever entered anyone's mind to ask if I have any issues that might not make these good options? But when comparing the methods suddenly all the questions.
I also am so sick of hearing "alternatives". This is such a huge spectrum but it is lumped into one name. Especailly when doing nothing is considered alternative. In that case since I had surgery does that mean I have done conventional? So the article lumped into to a group of people who were doing various treatments and did a study. That makes as much sense as comparing all the different types of chemos with all the stages and recptors.
Why do we not see alternative people. My mom is a huge success. They will will not allow her to particiapte in studies regarding not using chemo etc. Due to the feedback people have given her she chooses to stay quite as the feed back creates an atmosphere of stress. Having cancer is hard enough most don't want the added stress and I don't blame them. My first reaction was to just leave but then I thought how will this help our future my daughter's future. It takes a fighter to change the thinking of the masses. Look a Galileo pardon me if I have the wrong person. He claimed the world was round and suffered tremendously and today we all know it to be true but forget very quickly about the past.
On lung cancer I am wondering how many women may have gotten it from radiation as my radiologist confirmed all the women getting it from BC treatment. That is why after the 1990's they reduced the amount by 10% and now call it more targeted. Mrs. Reeves I can't help but bring to mind how studies of shown that cancer has like an 80% case link to tramatic events the year prior such as deaths. Did she do the standard treatment for BC? Both produce free radicles and are know carcinogens.
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its 12nn from my part of the globe. I left the thread last night feeling good, that even if we have different opinions -- we are respecting each other's decisions..
all I can say now is that I feel for WOM, in the same way that I feel for my mother,, just like everyone else in this thread I also wanted to find data that supports alternative medicines (in an honest, fair, unbiased way) I am sincerely praying that a neutral organization, somehow will stand up to this challenge and do it regardless of promise of profit or gain...
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-- 60 yr old BC Stage 2B ER+ (90%) Her2+++ with mutated BRCA 2 genes. Radical mastetomy with lymph node removal 8 Feb 2010. No chemo and radiation and completed a 42 day fast patterned after Gerson Theraphy (March 2010)..
Diagnosis: 1/9/2010, IDC, 3cm, Stage IIb, Grade 3, 3/25 nodes, ER+/PR-, HER2+0 -
WOM and Nanay: Like Athena talked about, we got seriously off topic w but it has been an interesting discussion . . .I have learned a lot about AIDS and infectious diseases.
Dear WOM and Nanay, I don't think you are going to find much data supporting alternative treatments for HER2+, I just don't think there's much out there, sorry..
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Lynn look up emodin you might be surprised
It is a natual substance showing huge impact (also makes chemo more effective). SF another harmless compound makes it even more productive. My links don't work and not sure many couldn't understand the scientists study terminology as it is on pubmed.gov0 -
WOM: I am with you 100 percent on paragraphs 2-8 of your long post (just above this short one - we crossposted). I will probably get clobbered for saying this but as long as we keep using pink boxing gloves and fighting like girls we will get nowhere. We have to fight like men, stop smiling submissively, tell the powers that be that we "prefer a new edition/of the Spanish Inquisition" to the treatments we are subjected to and that we want more and better. I, too, am dumbfounded by the lack of rebelliousness, the contentment and complacency. Don't understand it. We should be throwing Molotov cocktails, in a manner of speaking. As was pointed out earlier, that is how many AIDS activists did it. They showed particular courage because at the time it meant "coming out" as gay in a very homophobic world. They fought the gay acceptance battle and the disease battle all in one - and in the Reagan era. What absolute lions in courage.
What do we bc-ers have? All these nice looking women like Nancy Brinker and Marisa Weiss wearing pretty smiles. I love stereotypical femininity when it comes to fashion and sex but right now, and for this, it is a serious liability. We need to act like "a man" in the positive sense of the word and be strong, courageous and stop being so delicate and easily offended and fight for better alternatives. How does everyone think the suffragettes did it? By being happy little sissies? Hardly. Granted, they faced a far worse injustice, but when you have an illness for which a main treatment includes recommendations that you flush the toilet TWICE when you urinate while on chemo to protect others in the household (source: American Cancer Society chemo handbook) you know that fear is trumping enterprise and common sense in medical research.
I wonder what would happen if someone organized a huge cancer protest in DC and actually rallied government and big pharma and the scientific community and pressured them for a cure.... It is a nice thought. If Glenn Beck can hold a rally, surely we can? Do it purely for the publicity if nothing else. It is amazing how a little pressure can go a long way. Many the NIH can be persuaded to fund that risky but interesting study that has been sitting on its docket collecting dust. Perhaps a medical school can start offering a Ph. D program in an area of inquiry that could lead to a cure. Perhaps an enterprising biotech company can begin to dream big of making money from that great new idea it has. Perhaps the American Cancer Society can be exposed for the fraud that it is. Perhaps patients can stop believing that if they are poisoned for treatment, it must be good for them. Hundreds of years ago, it was thought that "bleeding" was a cure. We know better now, which means that we should know better now in cancer too.
If Egypt was possible, a better BC future is possible but there has to be discontent. I can live without a cure for the common cold but there have to be better ways to fight cancer.
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I looked up emodin and was not surprised. It was one of thousands of compounds that was screened in animal studies, appeared as if it might be useful, but got nowhere. This is the usual case for drugs early in development.
Being effective in petri dishes or transplanted tumors in animals is not the same as being effective in humans.
If it did work, it, or a very similar molecule would be on the market by now. You seem to be implying that someone has conspired to keep an effective treatment from being developed. There is no incentive not to develop a molecule that works. You may think that if it is natural, it is not patentable, thus no money in developing it. Not true. If effective, scientists will tweak the molecule slightly so it becomes patentable and thus potentially very profitable and develop it. Usually this tweaking makes the molecule better in someway (reduced toxicity or better efficacy) because they screen many tweaked molecules until they find the best one or two to develop further.
Who knows, emodin may have been the precurser to a similar compound that is already in clinical trials or on the market. Or it was tested in further animal models and bombed. You would never read about it if it bombed because there is no incentive for researchers to spend their time writing about negative results. This is unfortunate because it is useful information. The glory and $$ comes from something that works, not something that doesn't.
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hi wom,
honestly like lynn said my limited brain and time has not gone up to study emodin yet, but it sounds interesting, it is a natural susbstance in aloe right?
I will give it a go and search.. again I have not given up on the study of Her2+ and ER+ and if Herceptin could actually help..
although I would really say I cannot be swayed that my mother should take Chemo and Rx (all the non-targeted theraphies)-- which seeks to kill and destroy everything in its path)
and am really excited to see the results of my mother's testing for hormone imbalance (2OH to 16OH) after a year of purely alternative approach.
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i hope I can find a doctor that would agree that my mother be prescibed with Herceptin without the Chemo/Rx combo (kill everything in its path regimen)-- so that it is more targeted..so that at least I could probably influence her that it could probably work ..but still no decision here.. just studying..
on 4th May I am consulting an Oncologist specializing on Genetic testing (to get myself checked on BRCA gene2 mutation)--- I will probably ask him a few questions that came up to me -- reading from all these discussions..
Wom,
hang in there, though I would be careful not to say taht you do what we do, just becuase dadadad..
i wanted you to know that we are all in this together, even all the conventional girls here who are promoting/defending conventional or just merely being well meaning
hope we can walk out there and put up big slogans to demand for honest, unbiased research
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Athena, thank you for your information. After surgery and radiation I was told I need to take Arimidex for five years. I started taking this drug in January and for the past three months I have been a dragging my life around. i do not like the side effects. I am experiencing hot flashes, 20 lb weight gain, depression, crying, bone pain, hip pain, cloudy mind... in few words I am not myself. I do not want to take this pill and I stop taking it 4 days ago. I would love your feedback on this issue. It seems to me that you have a grasp on the real situation and the harmful effects of drugs. I am 64, I value quality of life and I am not waiting to live to 80... I dont want for the rest of my natural live be a "hot/hot flashes, bitch/moody on a wheel chair/risk of bone fractures" at least this is the picture that arimidex is painting for my future...... I would love to hear your reflection and recommendations...
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gals,
am so tired of reading all the arguments here.. I just would like to end my time here to say that although am not purely convinced to go conventional for my mother and honestly not 100% convinced that my mother will live a longer life because of alternative theraphy (100% agreeing that she have better quality of life with alternative approach)...
I TRULY BELIEVE that there are so MANY THINGS THAT WE AGREE ON, despite of all the things we disagree on-- these points that we agree on are very important for us to take ACTION together-- to DEMAND for honest, unbiased research on both conventional and alternative approach and that diagnostic tests/treatments be made affordable for everyone..
since I cannot copy and paste, just read my blog entry here:
http://nanaymiriam.wordpress.com/2011/04/01/conventional-versus-alternative-theraphy/
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nanay - how can you wonder if herceptin can actually help - the studies/trials are out there - read them. One example found that for early node negative bc patients like myself - there was a 5 year 100% non recurrence rate. Another historic study looked back at HER2 patients who had had no herceptin compared to those who had (for tumours up to 2 cm and node negative) - the results of this are amazing. The patients who did not have herceptin had 6 deaths, 10 local recurrences and 9 distant recurrences. In the patients who did have herceptin - there was only one death (no cause stated) and no local or regional recurrences over a long period. Granted, both of these studies were for node negative patients, but we all know that it doesn't have to be in your nodes to spread.
You may be able to find a doctor who will give your mother herceptin alone, some do, but it has been proven to work better with chemo. Do you ever read the HER2 thread - hereptin saves lives!!!
HER2 bc is not to be messed with!!!!
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Wornoutmom, you bring up a lot of good points. It's important not to assume those of us who went allopathic (and naturopathic) are complacent. I am fully aware the treatments are lacking. They invite a whole host of other issues, and it is frightening how little progress has been made in 20+ years on some levels. Imagine what it was like for me at the top research hospital in the country being told they simply don't know the best protocol for my cancer. This is the same doctor who suggested a whole lot of herbal supplements that are supposedly anti-cancer, btw. Breast cancer has been described to me as the most stubborn cancer of all.
I wish our advocacy could affect change more. We live in a hyper-capital society, where people have no time, are overworkd or unemployed, and corporations rule. Getting more testing on alternative treatments in this environment is next to impossible. I resent the implication that because I'm not out on the street, I'm complacent with research and treatment. I fight every hour of my day for second opinions, treatment alternatives, and new research protocols. That in an of itself is a part time job. And I teach others about my findings. That ain't complacent. I bet every single one of us is exhausted by the amount of thinking and research we do to improve our lives with BC (and the lives of our BC sisters).
The "pinkifacation" of BC treatment is purely a product of our sexist society, in which women are supposed to be long suffering, buck up, and not worry too much when their sexual health tanks as a result of treatment. That is hugely what is affecting BC research and outcomes--I finally realized part of the reason some of my friends were so cavalier about my cancer treatment is because the word on the street is it's "curable", nearly equivalent to a hangnail. Being a feminist is a good start--I don't tolerate pinking it up and wearing a nice head scarf so my colleagues feel okay about my cancer.
In the meantime, at the tender age of 40,I'm not willing to use my body as an experiment. Statistics and some good logic show that the treatment plan put in place for my cancer (okay, I'm stage 1, maybe I didn't have "cancer" according to these threads) INCREASE my odds of survival. Tamoxifen alone increases my chance by 8% according to Oncotype. I admit chemo was questionable in my case, but I am a young patient, and I knew I could survive the experience. I did, and I'm doing great.
Yes, I can get secondary cancers from radiation, chemo, etc. Am I cynical about it? You bet! I work closely with a naturopath who is working on my adrenal fatigue, vitamin D deficiency, and other issues.
BUT, statistically speaking, my chances of damage are FAR LESS than the darned cancer coming back. If I'd left IT ALL ALONE my chances of return were 30%. With treatment: less than 8%. With naturopathic: undetermined.
Maybe it's just that I'm a Virgo,but this seems like basic logic in an imperfect medical field. I currently fight like the devil for MRI, as I'm clear the mammogram is outmoded and on its way out, at least for a subset of cancer survivors.
I'd like to point out that I spend hours and hours and hours and hours looking at the alternative threads, talking to naturopaths,and considering the Block Center. Every time I came to these boards, I was told by the smart women who populate the alternative only treatments that basically,I was going to have to take a risk on alternative treatments as the findings were anecdotal. And as I dove deeper, for every study that shows vitamin X is a prophalactic, there is study Y debunking it. I'm sure there are quite a few naturopathic/alternative measures on this post that in 25 years will change the treatment protocols. But there are just as many, if not more, that will prove to be unfounded.
As someone who skimmed the surface on what trials actually entail, even if they start today on massive research initiatives into milk thistle, or vitamin therapies, it'll be 10 years before we have any definitive information.
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Iago, I stand corrected. Of course I'm incorrect on the Stage thing. So sorry!
I really like the tangent this topic has taken on. There are some wonderful thoughts and discussions here.
Athena, I continue to agree with you. We don't know if BC is preventable or not at this point. All we can do is do the best with the available information, whether it's research (my preferred) or anectdotal (others' preferred) but keep on questioning and demanding. I think the answer is somewhere in between the two camps...
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LtotheK, I'm mulling over your statement:
In the meantime, at the tender age of 40,I'm not willing to use my body as an experiment.
That's how I view some alternative treatment. What's measurable? What's evidence based? What's NOT trial and error? Alot of traditional medicine is. But certainly alternative therapies are, too.
I'm not dissing what you or anyone else are doing for what you (generic you) feel is for the betterment of your health. I think the difference here is a value system. And while we all value good healtlh, we have differernt ideas for what will take us there.
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LtotHeK, you wrote:".......BUT, statistically speaking, my chances of damage are FAR LESS than the darned cancer coming back. If I'd left IT ALL ALONE my chances of return were 30%. With treatment: less than 8%......"I am not trying to confuse you even more, but this VERY statistic you are using here is subject to controversy: 5 years ago, my oncologist showed me this beautiful graph in color, explaining that my survival was XX percent with surgery alone, YY (higher figure) with surgery and chemotherapy; and ZZ (even higher) with surgery, chemo, and hormonal treatment.OK? I ended up leaving that onc (due to a disagreement) and the next onc I saw simply picked apart (with his own facts) absolutely all of the statistics that the previous oncologist had led me to believe in.My second oncologist explained that anybody can get those beautiful curves to say whatever, and that, in view of the latest findings, my tumor-type (ER+, PR+, HER-) does not benefit AT ALL from chemotherapy. Which is still being confirmed today, at the 2011, SABCS conference, in San Antonio, where it has become obvious that the famous "standard of care" will soon be turning away from automatic chemotherapy for patients presenting ONE or TWO lymph nodes only(note: I am not saying that the standard of care will forbid chemo for patients with only 1 or 2 lymph nodes; I am saying that chemo will no longer be AUTOMATICALLY applied to those cases).Meanwhile, millions of women have been put through all those protocols, and given all those (erroneous, as it now turns out) "better" survival figures for their cancer-type.So what do we know about cancer.....0
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Anne, I think we are on the same page! I think going all alternative is too experimental at this point. I did a hybridized approach. And even my choices to take L-glutamine, for instance, are up to debate. Some doctors feel these supplements protect cancer, too!
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Txispa:
First, welcome to BCO and, secondly, I am sorry to hear about the awful time you are having with Arimidex. If you go on the hormone therapy section of the discussion boards, you may well find others suffering just like you on Arimidex or other AIs.
I am strongly against giving medical advice, not only because I am not a doctor but because I don't know anything about Arimidex and therefore wouldn't know what I was talking about. Nor do I know you or your medical history. So what I have are only my suggestions on how to guide your own decision-making on this:
You have been prescribed a long-term treatment that is causing you much misery, that comes with no guarantees but may save your life. For each of the side effects you mention, there may be solutions that work for you. You should definitely share all of your complaints with your onc. He or she may suggest any number of things, ranging from a anti-depressant (one of which is also said to be effective against hot flashes), a plan for the pain (which could include recommendations for exercise plus medication of some kind) and something regarding the cloudy mind (a more intractable problem, usually but also something possible to address). This will actually be a good chance for you to judge whether you are in good medical hands, because a competent onc should care about your SEs and treat them as aggressively as possible and, if needed, give you referrals to specialists for any particularly thorny side effects. Do not settle for any answer that sounds to you like "deal with it."
It is possible that efforts to curb your side effects may succeed brilliantly. Or they may fail, or have partial effect. Each person has unique body chemistry that governs her response to treatment.
I suggest that you do as much research as you can about Arimidex and ask your onc about other AI options. Make sure you can trust the sources of the research. Even though AIs are obviously very similar, our bodies have a weird way of reacting differently to the slightest change in medication. So discuss other options.
Some or all of your SEs may well resolve spontaneously with time and some may get worse. Hormone therapy is crazy that way. You will want to keep a log or very brief diary with scales or something charting how the drug is affecting you.
If things continue to be intolerable to the point where they affect your ability to function in social or occupational environments, and you are prepared to go off the drug, I recommend that you also be prepared, in your mind, to face the worst. Nobody can say whether the Arimidex is helping you. The existence of SEs are not a clue one way or the other. It could be doing nothing, something or everything for you. IMO, an honest decision to go off treatment that you have some degree of faith in cannot be made without staring the worst case scenario in the face.
I had to go off of one of my cancer treatments. To my mind, it was necessary for me to first ask myself whether I would be willing to risk metastasis and early death. To imagine a worst case scenario in which mets occur because I went off the drug (never provable, of course). I imagined a hypothetical situation in which it could be established without doubt that my decision to quit the drug was THE reason for my mets. Could I live with myself? Could I live with mets ending my life early? My answer, after 18 months, was "YES, YES, YES!!"
No patient should have to be put in my position - or in yours, or in that of so many women with breast cancer.
Remember that the decision to go off a drug must come from within you. Never use others' experience as a mirror of what could happen to you. They are not you, they don't know you and do not have your medical history or particular life circumstances. Because we are talking about cancer make sure that you have exhausted all options for treating side effects and finding similar drugs. Make sure the decision is arrived at by you in consultation with your own medical team and not under pressure from anyone.
Also, very importantly, make sure you make a distinction, in your own mind, between you having a bad experience with a drug and the drug's potential benefit. And that if you ever make any decision regarding a choice between conventional and alternative therapy, you do so with as cold, clinical, calculating and unemotional a mind as possible. Do your best to keep emotion and fear away from your research and treatment decisions. We all work partly on those emotions - it is inevitable - but they can cloud our judgement so that more we keep them at bay the better.
I hopwe someone who knows about AIs chimes in.
Good luck.
PS: Excuse the disjointed posting. Interruptions all morning. :-)
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Yazmin, I know you are right on many levels. In my case, I strongly question my choice for chemo, but I straddled Tailor X and fell right in the middle on Oncotype, so I went for it. I guess I'm basing my thoughts on the fact that more women are surviving this disease. Somewhere in Tamoxifen, radiation (which from all reports does seem to stop local recurrence, and my onc said distant as well) and chemo, I believe I improved my chances. I don't think those chances would be the same had I left the tumor in place, and not done further treatment. I think that would be hard to argue.
I'm not a doctor, and I always have to say "it's one person's opinion" based on the research I did.
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wornoutmom, you wrote:
I can't believe not one jumped on the idea that I had a very insignificant BC and that is why I was given the bc pills. I was told I had a clogged duct and dispite more than one doctor seeing this lump I kept getting told to put a heating pad on it for pain with no investigation. During this period my obgyn perscribed me bc pills.
OK, I'll jump
If I understand what you say, the doctors thought you had a clogged duct, not a *insignificant BC* when you were rx birth control pills. It was later the BC was found, and it was not why you were given birth control pills?
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Yazmin, I think you were caught between changing standards of care. I know in the time since I had bc, there has been a movement away from chemo for many women with er/pr+ bc, and toward hormonals as the primary adjuvant treatment. I don't see why this should give rise to anger or skepticism. Of course standards of treatment should change over time. Of course, they should be better at targeting treatments. It would be worse if they were still prescribing the same protocols I had six years ago. I don't understand this sentiment "they've changed their minds, see how screwed up they are (were)." I see changing standards of treatment as indication of the opposite.
And keep in mind also that what going on is not only a movement away from chemo but a movement toward hormonal treatments. Thats part of this shift as well. There are both more options available for hormonal treatment and more confidence in its effectiveness.
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Nanay
I am one that was given Herceptin with out additional chemo meds. My onc was OK with this, even though he pointed out I *may* gain additional benifit from adding those to the Herceptin. That was a year ago. I do not know how it is where you live, but I think you will find a Onc that will agree to give the Herceptin alone if that is your wish.
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I need something cleared up. Time and time again I keep reading about how we have so many more treatments. I'm going to predicate this by saying this is only information I've gotten from my onc, so someone correct him/me if it's wrong. All of the new treatments are recycled old ones...for example, if one hormonal doesn't work, chances are no others will either. If for instance, taxol doesn't work, taxotere won't either. These drugs are all the same...just given a new name or a different delivery system. I don't think he's a bad onc, I just think he's being honest. Why would he say this? Everytime I've mentioned a treatment I've read about on the boards I get the same answer. If drug A doesn't work, drug B or C won't either because it's the same thing, just mixed differently, processed differently, etc. The exception, he tells me, are targeted therapies, of which they still really have no idea how they work or why/why not. What am I missing? Are we really any further ahead if old drugs are just being recycled under new names?
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gracie, I think the jury is out on whether a drug will or will not work because a similar one did or did not. I would be rather alarmed at your onc's somewhat sweeping statement, frankly. I know that in many areas of medicine, that is not true at all. In fact, you can have zero relief with a given medication but its isomer can help.
The mechanism of delivery, the way in which a drug is metabolized and even the genetic expressions of metabolic enzymes that break down that drug make a huge difference. Delivery and mode of action can even spell the difference between effectiveness and lack thereof.
Unfortunately, though, this is an area of medicine that is still in its infancy and most drug therapies for which there are similar drugs or substitutes involve a trial and error method of seeing what works for the patient. In early stage cancer, you can't use trial and error, of course, because you can't see the effects of what you are taking.
However, in stage IV you can work on a trial and error basis, and Stage IV patients sometimes find that a drug that once affected them one way can change its stripes. In fact, I believe some stage IV patients are able to take chemo treatments that they took years earlier as early stagers (in the few cases where this is possible). Usually, therapy is sequential and once you are done with a class of drugs (eg: the Taxanes) you are done, but not always....maybe someone with more knowledge of Stage IV treatment can help to clarify.
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