Why Im Not Doing Chemo
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Princess, The bc surgeon, I went to recently, after looking at my biopsy report, said I would definately need to be on herpectin. She had no problem with me not taking chemo. She said it wasn't "standard", but saw no problem with herpectin alone. The surgeon said that with my dx that the oncologist will want to do a scan and possibly check for tumor markers.
If I find the cancer has spread beyond the breast then I will go to the breast cancer center that impositive is now at. I'm now on a modified no sugar diet (eat raw fruit with veggies). My breakfast is whole yogurt with raw fruit. Along with all this I will probably be doing the herpectin that is if I can find an oncologist who is willing to work with me. And...work on building my immune system, destressing, and hopefully overcoming the systemic yeast overgrowth, which is probably the reason for my demise.
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The name of the treatment for Her2+ cancers is herceptin, not herpectin. Her-cep-tin.
There are many interesting studies being done in the treatment of cancer. The scientific method works by posing an hypothesis, attempting to test that hypothesis experimentally, recording and analyzing the data, determining if the hypothesis is supported or not, and then making a new hypothesis based on what you have discovered. It is a constant process. I, personally, would not base my treatment on studies that are still far from clinical application. So much can change between a discovery in the lab of a certain cellular mechanism, and the application of that information to human bodies in a medical situation.
Sometimes, eve, the studies you cite do not say what you report them as saying here. My hope for you is that you find a doctor who will discuss these with you and clarify for you what they are actually saying and what the clinical application of them is. And then that you can trust that doctor to make appropriate clinical recommendations for your treatment.
And we all certainly hope that reports of your demise have been greatly exaggerated!
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Eve, PLEASE consider separating out "chemo" from "chemo + Herceptin" in your evaluation. Think of them as totally different animals.
Chemo by itself has a pretty dismal track record. Chemo with Herceptin is the silver bullet to HER+ cancers. As I understand it, these HER2 driven cells are on PCP and chemo is like the stun gun that makes them be still long enough such that Herceptin can take the kill shot.
I'm doing a short course - 4 treatments. I can do four of anything.
I'll support you whatever you do sweet lady - there are layers and layers and layers to this - it seems to bring hidden wounds into bright relief, and call into question our ability to accurately assess much of anything because this is our very own body catapulting us unwillingly - and for you and many others repeatedly - into the Land of the Screwed. That carries a certain set of issues for me, experiences I thought I had long ago filed away with great effort are once again rearing their ugly heads (really - I'm sitting at this light on the way to the oncologist reliving that moment in 7th grade when my period bled into my shorts and the cool girls pointed it out -- really?), and I think every woman here is sorting through things, and doing the very best they can.
I really hesitated to even write this, but I'm so persuaded that Herceptin is a game changer for HER2+ cancers I couldn't responsibly not.
But regardless, I wil be here with you.0 -
revkat, there are many reasons why one might misspell unfamiliar medical terms - I'm a very bright woman who, among other seriously scary OMG I'm losing it moments, could not remember my youngest child's date of birth today.
There is no defensible explanation for being unkind. This forum is here to help you work through your issues. It is, in my opinion, an abuse of the venue to do that on the back of another member.
Lest my political correctness get past you, I'll be clear: knock it off.0 -
Little confused here ladygrey as to why you are attacking me. I just offered some clarity and some hope for a good outcome for a fellow bc patient. Your unkindness is indefensible. If I have somehow tapped into your own issues, I do apologize. When there seems to be confusion, the kindest thing to do is to clear things up.
Knock it off yourself. It's not your board.
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revkat, all other issues aside - and as a very talented trial lawyer I could argue the spirit behind every word - the last line of your post is indefensibly cruel.
You are right - it is not my forum. But Eve is my friend, and I will defend her dignity, period.
And I will call down meanness, period. I cannot abide meanness.
I suggest you not tee it up with me.0 -
I certainly respect everyone's right to choose her or his own treatment path. I just wanted to point out that the Australian study citing only a 2% benefit from chemo was not specific to breast cancer -- and provide a link to a breast-cancer-only study that showed greater benefit. That's all.
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Eveberry,
So glad you've got insurance for the MX surgery. What a blessing that you have it now. As far as your choice, I am certain you've put in the soul searching and research that you needed to, and what is important is that you feel you are making the right decision. Only the person who is standing there with the diagnosis in hand can make decisions on their treatment, not anyone else. I wish you success with the treatment you choose, and I hope it works. Cancer sucks.
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I'm finding it really odd that I'm being attacked so vociferously here. Rather meanly I should say. You have imputed feeling and tone to my post that was not there.
So . . . in addition to scientific facts being a matter of opinion and personal choice, so to are spelling and the meaning of words?
I have no desire to interact with you at all ladygrey, you are the one who has decided to attack.
Whatever.
Eve, I did not intend you harm. I am glad you can have the needed surgery and hope you will discuss your readings with your physician. I hope you have one you can talk to and if not, I hope you find one.
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Gotta speak up here...
revkat's words have helped me often throughout this time in my life.
there is no need to be nasty.
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I don't think anyone intended harm. Lady Gray was being sensitive to me knowing where she's been lately that correction wasn't something I needed right now. It's ok that I'm corrected on grammar or spelling. I'm a little right brain dyslexic, and it's not the first time this has happened to me on these threads.
I am deeply touched today by the pm's and kind words of those who support my decision not to do chemo. Thank you everyone for caring. I appreciate it.
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Lady Grey, this u-tube video
http://www.youtube.com/watch?v=48VSU4AZ-L0
pretty much explained to me why chemo isn't necessary with herceptin... although the last words of the video advocates chemo.
It clearly states that herceptin not only binds the her2 + gene receptor that it also makes the cancer cell vulnerable to our immune killer gene for distruction. If we take chemo and our immune system is suppressed then the natural killer immune cells can't do their job which is to reconize the herceptin as foreign antibody and destroy the cancer cell. Science rather is hoping the chemo destroys the cancer cell.
What I want to do is build up my immune system so when the killer cells sees the herceptin locked onto the cancer cell, which poses as a normal cell, the killer cell will see it as foreign and destroy it causing cancer cell death. At least in what I've read and videos this seems to make the most sense to me.
I've had a lot of doctors wrongly dx me in the past or members in my family so now I now check everything out before accepting their dx or prognosis. I have loads of examples where my doctors have been wrong. I am not as trusting as I once was. I want to know before going into the doctors office everything I can about the her2 gene, treatments, side effects. I'm no longer the yes person. In the end I want to know that my treatment is my decision, my choice...not pushed into it through fear tactics or lack of information. The docs I've recently had seem mostly to appreciate that I have thought it through and want to partner with them. It sounds like you did your homework when you saw your oncologist. In the end, when they answered your questions, you feel at ease before moving forward with treatment. This is good.
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Revkat, I have to say that I perceived your post as being a bit condescending to eve, as well. That's con-des-cen-ding. Do you see?
Of course you didn't mean that but sometimes words in print do not take on the same connotation as spoken words. That's what I hate about e-mails.
Dang LadyGrey. I would hate to go 'round and 'round with you, but would love to have you in my corner! lol
Anyway, Eve those of us who know you well know you are an accomplished business owner and author and we are all a bit dyslexic at times. Can't blame mine on chemo-brain though!
Just wanted to say that you may think some here don't support our decisions but women here, from both camps, can add valuable information to your search. I too just wish everyone would address each other with respect. (((hugs to you!)))
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Eve...Please try to find the time to read the Robert Bazell book about Dr. Dennis Slamon and the discovery of Herceptin. Likewise, I think an interesting book, for EVERYONE to read is Dr. Jerome Groopman's new book, Your Medical Mind: How to Decide What is Right for You. In it, he discusses various patients' illnesses and how, over time, the patients decided on their treatment protocol. While, I was underwhelmed by the book, I do think it is a topic that needs further investigating. How DO we ALL, individually, arrive at our treatment protocol decisions? It is a most provocative idea...and based on how each of us here on this thread has chimed in on how we, EACH, make our decisions, the topic is well in need of further investigation.
http://www.amazon.com/Your-Medical-Mind-Decide-Right/dp/1594203113
I will add, that when I decide, I begin with pubmed.org and look at the journals that the studies are published in. Then I look at the journal itself and investigate it, if I'm unfamiliar. Then, I begin to form an idea....The process can take a minute or a month or even a year and can even change over time.... Throughout the process, I will work closely with my physician. Dr. Groopman also discusses in his book, how people arrive at choosing their doctors. The process is quite interesting because of how people vary in their process of deciding....
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I believe people have the right to choose whatever course of treatment they want or do not want, I have an aunt who ate a raw food diet and lived with BC for 20 years and a sister who was treated at a prestigious hospital in la Jolla california and lived one year with breast cancer, if I were diagnosed on my first visit with an oncologist of any type of stage four cancer at this point in my life I wouldn't do any cancer treatments. I would welcome wonderful hospice into my home and let it roll, and thank God that is my choice.
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I don't think LadyGrey would be too happy with my 2 cents so I will zip it. Trial Lawyers don't worry me at all. I'm not hungry this morning.....tummy virus. And as a trial lawyer, LadyGrey should have noticed that Eve brought the word "demise" into play here. Now back to your regularly scheduled program.
Revkat, I saw no insult. Please feel free to correct me whenever you like.
Eve, I didn't do chemo either, but I did do the radiation and hormonals. Hopefully that will keep it at bay. I think you should consider conventional as well as alternative. After all, you have been bitten 4 times, with your alt treatments alone, and the first three were not her2+. That alone should give you reason to pause. I will respect your choices, but felt I should bring this point to your attention. Sometimes, we can't see the forest for the trees
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TheLadyGrey: You go girl!! You said everything I wanted to say to revkat and then some! There is just no plausible reason for being unkind to another.
I wish you a positive outcome with your treatments.
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eve,
I haven't had a chance to catch up on all the posts but I did just read your post near the top of this page. Please don't base your decisions on what your breast surgeon says. A breast surgeon is not an expert in this area. A BS operates. That's her expertise. Anything she says about any treatment beyond surgery is personal opinion only. To be perfectly honest, going way back I question some of the advice that your BS gave you and I think you were harmed by not seeing an oncologist in that you were not given the right information on which to base your earlier treatment decisions. I don't want to see that happen again.
Talk to an oncologist and get an understanding about these treatments from him or her. How does Herceptin work? How does it work with chemo? What is the difference in expected result if you take Herceptin only, without chemo? What is your risk of mets in each scenerio? Given your other health issues, what are the likely side effects from Herceptin? And from chemo?
All the questions and concerns you have are valid. You need to get the answers. Talk to an oncologist... or two.... or three. Don't rely on the opinion of your BS or the opinions of women here (who may know a lot about our own diagnoses but your situation is different) or a few excerpts from a few articles or studies. Talk to the doctor whose job it is to really know this stuff. Get your answers there.
Then make your decision.
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Questioning standard treatment takes courage in many ways. People will challenge you either way. I have a dear friend who insists that I must correct my PH, take vinegar for reflux, etc, and I love her for caring but it's my choices. I trust smart up-to-date Oncologists but I don't do everything they say either.
I want to repost what princess said, I really like this.
"Although I like the fact that this board alllows people to share information and offer support, I would never ask patients on the internet for serious medical advice or care what they think. They simply are not qualified.
Do your own research and rely on the professionals such as your ND and onc to help you make important medical decisions. You don't want to make any irreversible mistakes. "0 -
Eve,
I have written to you before, and I am sorry for your progression.
Perhaps part of your progression is that you could not afford standard treatment (stupid insurance stuff in America). In other words, the progression is not because you advocate alternative treatments, but because you were denied standard treatments due to circumstances (radiation, tamox). I think that is one of those logic things where a implies b but not-a does not imply not-B. I have forgotten all that stuff I learned in college.
Anyway, what to do now is your decision. I hope you get approved for herceptin and fight it with whatever you feel is beneficial after your research.
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Thinking about it, there seem to be two trends in articles that are posted about cancer.
One type of article, which can be very compelling and valuable, describes a theory of how cancer begins, or how treatments work. If you follow that theory to a logical conclusion, a particular treatment or lifestyle change should help you.
Another type of article describes a study that was done on an actual treatment or lifestyle choice. These studies try to provide an unbiased statistical analysis of the actual effect of what's being studied. While a particular theory of cancer might inspire a study, the results of the study should be independent of whatever theory inspired it, so that we can notice results that might be surprising to our world view.
I personally find both types of articles to be an interesting read, but I try to base my behavior only on the latter studies (if they seem credible). So hypothetically, while it might be compelling to think that food x causes cancer, until I see a study that shows a marked cancer decrease from a non-x diet, I'm not going to actually eliminate food x from my diet.
On that note, it would make sense that herceptin alone would be a reasonable treatment, according to what we understand about how herceptin works. But actual studies have shown that herceptin is much more effective with chemo.
I'm not in your shoes, and of course you have a hard decision to make, which I respect. Just my 2 cents.
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Evebarry, I believe that endless reasoning in the absence of guiding intuitions is unproductive, You are obviously a very intelligent woman doing her homework and have all my support.
Have you looked into participating in a clinical trial, i.e. # 11 or 31 (direct links did not work)
http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=7728783
"In any moment of decision the best thing you can do is the right thing, the next best thing is the wrong thing, and the worst thing you can do is nothing." - Theodore Roosevelt
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Eve, I agree with Beesie. My breast surgeon, ragiologist and medical onc all differed in what they thought my treatment plan should be. Your medical oncologist should know more about the pharmaceuticals you may be contemplating such as efficacy and side effects than your breast surgeon or a radiation oncologist. A very important part of our decision making is making sure you have ALL the information available to you. There may be something a medical oncologist can do or say to ease your fears of chemo and/or Heceptin such a a low dose regimen, etc. Once you have good information from all sources, you can devise a battle plan that works for you. We are all different. It's not a one size fits all world so be your own best advocate and pick a "size" that fits you best.
Edited to say: I am getting my "chemo" if you will (DMSO, Vit C, Laetrile). Mine are natural substances that are being delivered to the cells by the DMSO but Wornourmom is getting low dose pharmaceutical chemo and herceptin that is being delivered by IPT (Insulin Potentiation Therapy). She is doing well on it. Her tumors markers have been halved since she started and she still has all her hair, etc.
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I've recently been dx for the 2nd time. The first time (at 36) I was shocked! I found the best doctors to help me & blindly followed their lead. I couldn't think for myself at that time, I just couldn't do it. I had a lumpctomy, chemo, rad & tamox for 4 1/2 years (just stopped taking it when I ran out on Oct 23rd--I can't believe how much better I feel already). So far the dx is for the same type of bc. I'm awaiting an mri & pet & a date with the onc to discover my choices. I have had more time to burn on the 'pute looking things up about alternative/conventional treatments, better diets, etc. What I have learned so far: any treatment of any kind helps some people & not others, a change of diet helps some people not others, fit skinny people can get cancer too & obese lazy people can not get cancer. It is a complete crapshoot. Like Eve, I will do what "I" need to do (whatever that is) once I receive my options. There is nothing more that any of us can do than what we feel is best for ourselves.
And, yes, i was hopping mad with the 2nd dx (located just below the first,after a lumpectomy with clean margins & node neg), but I got over it. What can ya do? Living forward......
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One is free to decide to treat, not treat etc. My friend preferred to have only palliative medicine, no treatments at all.
I went for the most aggressive treatments I could ask for, chemo runs all over the body and the idea is to kill all cancer cells, that healthy cells are affected is true.
The problem with cancer is what is a good decision, the wrong one can be like playing Russian roulette.
84% of breast cancers are non high risk people, there is no proof that this or that causes breast cancer.
Also I want to let it be known that with no insurance there are several ways to get treatments. I work in a cancer center but also I volunteer in a center that women pay on scale for their treatments.
I am lucky to live in a country where I can get the best treatments possible, I always will chose this, but to replace them with alternative medicine, I am to scare to loose my chances to beat the illness .
I would not change nothing on the treatments I had.
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I had four rounds of chemo. Before each round I had a blood test and my immune system held up great. In fact when I was going through chemo my kids had the swine flu and I never caught it. I also had a friend who had her2 positive cancer and chose not to do chemo. She even went to Mexico for alternative treatments. She ended up with stage 4 cancer. She then tried conventional treatments and that kept her alive for almost five years. So from DX to death she lasted six years. So like all cancers and treatments every cancer is different and some treatments work and some don't.(alternative and coventional)
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Hi Evebarry and others,
Having read the comment many, many times that "chemo and Herceptin" are "more effective", I would like to point out the basis for the confusion involved in that statement.
The trials that established the basis for the use of Herceptin (trastuzumab) were not done comparing the use of trastuzumab alone versus the use of trastuzumab plus chemo. They were done with chemotherapy plus trastuzumab. versus chemotherapy alone. As a result, there is a lack of adequate documented information about whether trastuzumab plus chemo is better than trastuzumab alone.
This is a huge blind spot in particular for patients who are stage 0 to stage 1 and who are HER2 positive in particular. Consider that with earlier detection, more women today are diagnosed with early stage breast cancer, so this group is quite large. A rough estimate is that about 1/3 of HER2 positive patients are stage 0 to stage 1. That is a lot of people who are undergoing Herceptin (trastuzumab) plus chemo without adequate studies demonstrating that there is additional benefit for them to do chemotherapy at all.
I am speaking as a person diagnosed in 2002 when testing for HER2 was not yet standard practice, when the trials were still in process, and as a person who did CAFx6 followed by IMRT rads and then 1 3/4 years of tamoxifen. (See my signature below.)
My understanding of chemotherapy for all types of breast cancer is that about 1 in 5 patients treated with chemotherapy end up receiving a chemotherapy that "matches" (has a positive effect) on their particular cancer. This group runs all the way from those who have no evidence of disease as a result, to those whose cancer is slowed or those who have a limited time before they again are dealing with breast cancer. Don't simply take my word for it. Make the effort to get exact information from oncology sources. It may have even improved somewhat since the period around 2006, which is when I believe I saw an estimate of around 17% of breast cancers have some positive effect from chemotherapy.
The major effects of chemotherapy in general apply only through the first 5 years after treatment. That is quite obvious from graphs showing the drop off of positive effect from chemotherapy at around 5 years. If you happen to be a person who is highly unlikely to recur for 10 years, do the math.
One of the factors that I personally believe is not adequately considered when prescribing chemotherapy is the lack of inclusion of weight as an issue following chemotherapy. For example, I was diagnosed at age 51-52, and had maintained a proper BMI up to that age. Following chemotherapy and subsequent chemopause, I had gained 25 pounds, which put me at much higher risk for recurrence. In other words, chemotherapy increased my risk for return of breast cancer through bringing about such complete menopause. Over the following six years, with constant work, I initially lost the weight I had gained. Gradually as I became more and more menopausal, I regained the weight I had lost even though I continued the identical diet and exercise regimen that had initially resulted in weight loss. That weight gain, brought on by chemopause, continues to be an added risk factor for me. When I completed chemo, radiation and the 1 3/4 years of tamoxifen, oncology patted itself on the back for getting me through treatment and totally ignored the increased risk factor posed by weight gain.
As a woman married for 30 years with one partner (both of us who enjoyed an active sex life), I also was not given any pre-chemo counseling about the severe vaginal dryness that makes vaginal sex impossible regardless of available commercial lubricants, or any counseling about the huge loss of libido. These were a direct result of chemotherapy and chemopause.
There are a few patients who have found oncologists willing to provide trastuzumab alone. But the majority continue to stand on studies that have never compared chemotherapy plus trastuzumab to traztuzamab alone. There are studies in progress now that allow elderly/compromised patients to have trastuzumab alone, and a few other studies using trastuzumab alone. Hopefully they will provide more information to us.
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Thanks Alaska Angel for sharing about the chemo/trastuzumab study. Logically I have a difficult time putting the two together. I understand that the chemo cocktail kills cancer cells that aren't her2+ mutations. What of course concerns me now is the her2+ mutated gene. Again, if the herception locks onto the cancer cell it basically stops the fast progression of that cancer cell then the chemo along with it is of no value. The herpectin has basically crippled the her2+ gene so that it's proliferation isn't aggressive or quickly multiplying or not multipllying at all. The chemo only kills fast growing cells, and once herceptin locks onto the her2+ cell it no longer is a fast growing cell so it would seem that chemo is of no benefit once herceptin locks on to the her2+ gene. Did all that make sense?
Also the killer cells from our immune system sees the her2+ heceptin and destroys it. What more do I need?I saw a different surgeon today who works with the plastic surgeon who does botox. I liked her as well. I said when she came into the office that heads up, I think outside the box. She smiled. It didn't seem to ruffle her feathers. She made a comment that most doctors from the NW are alternative friendly. I love the N.W.
Friday, I see the new plastic surgeon. Then to make a date for the mx. Scary!
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good point alaska...adding chemo to herceptin probably is more effective, but that's because chemo often kills off a number of cancer cells, and occasionally all of them. But mostly, chemo does not prevent recurrence, nor metastatic breast cancer if your cancer is predisposed to become metastatic. What chemo will definately do, is compromise your immune system, cause a possible future 2nd cancer, and all the other nasties so many here live with. Chemo is, in essence, still an experimental treatment. Just as most treatments are in the experimental phase for BC. Nothing much has worked over the last 50 years. There is hope and optimism for herceptin, hope for the newer targeted therapies. Radical surgery is outdated and proven to be ineffective. High dose chemo is outdated and proven to be ineffective. And now studies are revealing that even early detection is showing little benefit to survival (except for the 55-70yr age group). So dont blame yourself for anything Evie
, oncs dont blame themselves for their endless failures and distorted trial results. The best any of us can do, is build as strong an immune system as we can...(and from what i have been reading lately, maybe protein is an important component) build VitD levels, consult a professional re natural therapies or supps, consult an oncologist for standard treatment options...and make an informed decision that sits well with our philosophy of life. Looking at ways to heal your body is NOT blaming yourself for your cancer. Cancer is a complicated disease process..we have the option to look at cancer as an indication that cell proliferation and mutation has occured in our body, and then look at what possible options we have to reverse or control that process...I find that a much healthier approach than a defeatist, 'victim of the beast' mentality...If we can keep ourselves alive long enough, we may see more drugs like herceptin, which can control this process without toxic chemicals.....meanwhile, i will be here for you too 0 -
http://www.ncbi.nlm.nih.gov/pubmed/ http://www.healthline.com/aboutus.jsp http://www.caring4cancer.com/ http://www.cancer.gov/ http://www.cancer.org/
Evebarry,
I like that you did your own research. That help makes one feel confident about their choice. I feel that is so important. I have refused chemo and I am advance stage. I like being able to walk and was going to a onc that felt treatment for side effects would encourage cancer to grow. I have since then switched onc in the middle of treatment and that was one of the best things I did. He and his NP's are very aggressive in treating side effects.
I also included some of my most favorite sites. The med-line will help you understand your lab test results. Pubmed is a professional site of the latest research. The caring for cancer site helps with treating side effects for treatments of all kinds and also has a little information on what not to do that can harm you.
I am happy to read that you have good insurance now so you can take care of things.
I did not read most of this last page as there is too much bickering for me, that is not what this site is for. Thats-life does know a lot about alternative medicine and has some recipes.
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