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All TopicsForum: HER2-Positive Breast Cancer → Topic: How much does Herceptin improve HER2/neu + prognosis?

Topic: How much does Herceptin improve HER2/neu + prognosis?

Forum: HER2-Positive Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Feb 17, 2009 10:48AM

Rubyluby wrote:

Hello ladies,

Although I'm stage 1 and had a small (1cm) tumor) and am node negative, my surgeon was quite doom-ey about my being grade 3 when he gave me my post-lumpectomy pathology report on Friday. He said the Her2/neu + went together with the grade 3 which had an unfavourable impact on my prognosis, but that treatment should bring the percentages up. Bummer! Up until that point I thought my outlook was pretty good but I'm now depressed as hell.

I've been reading everything I can find about HER2/neu and it seems the words "aggressive"and "poor prognosis" crop up a lot. Is that just what the situation was PRIOR to Herceptin and the popular perception has still to catch up? How much does Herceptin change the picture?

I can't see my oncologist-to-be till the end of next week because she's on holiday and this is all chewing me up. Does anyone have some facts or figures? I know about the big HERA trial, but it seems stage 1 HER2/neu is still a bit of a mystery.

It's great having this space to connect to other women in the same boat!

Lucy 

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Mar 4, 2009 06:38AM lexislove wrote:

http://www.mamm.com/highlights.php.?&qbackid=4978e64258089938_88072&qbacktitl=Current%20lssue&seq=1

MAMM Article Her2 Promising Times ahead

3rd page of the article has a doctors statement reagrding Her2 disease. Check it out!!!!! Tongue out

Dx:2007, 2B, Triple+, June 2008:Lupron,Zometa,Tamox.Jan 2010:Poor metabolizer of Tamox switch to Femara.Feb 2010: cyp2d6 test reliable? Back to Tamox. Ooph soon.
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Mar 4, 2009 03:22PM my2boys wrote:

Thanks for the article, lexislove.  It is a good read and I especially liked that statement on page 3!

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Mar 4, 2009 05:12PM suemed8749 wrote:

I read this article while I was in the chemo room getting my most recent Herceptin treatment. Boy, that put a smile on my face!

Dx 1/15/2008, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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May 9, 2009 08:05AM snowyday wrote:

http://www.martinfrost.ws/htmlfiles/wonder_drugs2.html  Another article about herceptin so confusing I just keep looking and looking.  Onocologh Info Blast has some really great articles on herceptin. But to be hones I get lost in the numbers at times.  I just pray that this drug will do what the Oncs actually says it will do. 
PN Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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May 9, 2009 09:13AM , edited May 9, 2009 09:15AM by orange1

Hi Snowyday

I just googled the author of the report from the link you provided.  IMO, he's a huckster.  He sells his "scientific reports" on cancer for $297 from his for-profit website.  His PhD is in the field of the classics, not in a science field.  His association with Sloan Kettering is as former public relations head, not in treatment or research.  

As far as the content of the article, he is presenting a lot of half truths that add up to essentially lies. I guess he does it to sell more of his alternative cancer treatment reports for $297.

If anyone  would like me to go through the article and detail where he presents facts with the intent to mislead, let me know and I will.  However, it will probably be a week before I can since I am traveling for work next week and have all my articles with the statistics at the office.

Dx 8/2007, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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May 9, 2009 09:51AM Kaidog wrote:

Lucy, you and I have pretty much the same diagnosis -  small (I'm a T1a), early stage, aggressive HER2+++ tumor.  My signature says ER/PR postive but that's not 100% true - I was <5% ER/PR positive in my pathology report and they're re-testing to see if I'm actually negative.  I'm 40 years old. 

Anyway, I freaked out initially, too. At first, my surgeon seemed very concerned and said I'd be getting chemo. The next week, she told me  that I might not get chemo at all.  Then, in a third conversation, I told her I was confused - and that's when  she told me that the expert is the oncologist: in fact, she admitted that she'd just learned the previous week that there's a lot of debate in the oncology community about dealing with early stage HER2+++ cancers. She hadn't realized that there was so much disagreement about treatment for these very small, aggressive tumors.  Then she explained to me that surgery is a very different discipline; they don't do internal medicine the way that the oncologists do, and that my oncologist was the only person with the expertise to help me make that decision and understand the risks and benefits of systemic treatment.  I really appreciated her honesty, and it was a lesson in the fact that medicine these days is extremely specialized, particularly when it comes to oncology.

So - Make sure your oncologist is up to date on the latest research.  If s/he dismisses chemo as unnecessary, bring along this article: http://www.mdanderson.org/departments/newsroom/display.cfm?id=bd7ae450-a5c9-4c64-bd4666c8ca98ce4f&method=displayfull&pn=00c8a30f-c468-11d4-80fb00508b603a14 

Secondly, don't let your surgeon freak you out.   I'd bet that your oncologist tells you that chemo and herceptin are going to cut your recurrence risk substantially and that you're lucky to have caught your cancer when you did.   I keep thinking of it this way:  there was a time, not so far back, when HER2 status wasn't even recognized, and there weren't treatments for it.  Now they know what to look for and how to address it.  We're lucky.  

Trying to love my chemo curls Dx 4/10/2009, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER-/PR-, HER2+
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May 18, 2009 06:16AM snowyday wrote:

Orange1 thank you for that information, it makes me so angry that for $297.00 dollars this butthead would publish this article,  I am going to have rethink alot at least now I can discount the confusion with that article.  Thanks again. 

PN Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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May 18, 2009 06:29AM snowyday wrote:

This is one review I found on Ralph W. Moss and I am looking for more info on this person, or Orange1 should I be looking for another name?

  

  Book Review: We Want to Live by Aajonus Vonderplanitz

"From the Planets"

© 1997 Ralph W. Moss, Ph.D.
(www.ralphmoss.com)


Michael Schachter, M.D., an old friend who treats many cancer patients, returned from the September meeting of The Cancer Control Society in Pasadena all fired up: he had heard a presentation by one Aajonus Vonderplanitz on the latter's new book, "We Want to Live."*

Mike had also seen the blood work on a multiple myeloma patient who had failed to respond to all other conventional and unconventional treatments. The man went to Mr. Vonderplanitz and in a very short time most of his blood parameters had completely normalized.

Shortly thereafter, Mike spoke at the panel that Mary Ann Richardson, Ph.D. and I organized at the Third International Congress of Alternative and Complementary Medicine in Arlington, VA. There, he made his enthusiasm for what Mr. Vonderplanitz was doing public. And so I ordered and read this book. It annoyed, fascinated and challenged me.

I was very skeptical. There is the question of authority. I am certainly not hung up on academic credentials, and know that some very excellent discoveries can come out of left field. But essentially Aajonus has little on his resume that reassures us that he knows what he's talking about. He is a self-appointed "nutritionist," who tells us that he was featured in Disney's Epcot Magazine and has "fostered nutriton on several talk TV and radio shows and children's programs." Fine, but hardly promising for an expert on cancer therapy.

Dick Something

This book is odd, as odd as the author's name. (His real name, he confesses, is Dick something, but not liking the sexual connotations of "Dick," he chose a new name that he calls "more Graeco-Roman sounding." Graeco-Roman? "Aajonus," he is constantly explaining, "like homogenous but without the hom." "Vonderplanitz" seems also made-up German meaning "From the Planets."

Little things about this book and its author annoyed me. He says "effect" when he means "affect," (twice on page 22 alone); that sort of thing. The organization of the book is maddening: the first half is a novelistic story of his estranged son's recovery from a severe head injury, interrupted by numerous appendices. He suggests that the reader go through the book consecutively but, hungry for details, I found myself constantly flipping back and forth.

The core of the book is how Mr. V. barged into the hospital where his comatose son was dying from his car injuries and took charge of his treatment. At one point he went so far as to break open the nurses' medicine cabinets, pour his son's medication down the drain, and replace them with certain formulas of his own.

What were these formulas? Well, Aajonus is a total fanatic for raw foods.

His prescription for health for everyone (his comatose son included) is to get back to basics, and start eating the way our ancestors reputedly ate. His basic philosophy is that (a) food is to be eaten in a live, raw condition; and (b) a diet rich in raw fats and raw meats from natural sources is essential to health. According to the introduction to his book, "we must think of them as new food groups, utterly different in their biochemistry from the fats and meats we have been taught to avoid in cooked form." Thus, his diet primarily encompasses:

  • raw animal meats (beef, fish, poultry, organic eggs)
  • raw dairy products (unsalted raw butter, raw milk, raw cream, unsalted raw cheeses, raw kefir)
  • raw whole fruits and vegetables (especially vegetable juices)
  • unheated honey

Weird? Well, this is not unheard of in the holistic health movement. In the 1930s and 1940s there was fascinating work done by Francis Pottinger, M.D., who showed that raw foods contain nutrients that seemed to be vital for health. Then came Weston Price, D.D.S., a dentist who believed that deterioration of the dental arch and of teeth in general could be correlated with the switch towards an adulterated food supply. Price traveled the world studying so-called "primitive" diets. According to Price, most of the native cultures of that time ate many animal foods raw (milk and milk products in Switzerland and Africa, Eskimos, even Japanese with their sushi).

Raw Meats

According to this point of view, "civilization" brought with it a taste for cooked meats, and a consequent decline in general vitality and health. First, I am not initially convinced by Mr. V.'s contention that raw meat and dairy products are entirely safe to eat, especially for those who have compromised immune systems. (I will not attempt to deal with the intricacies of the potential bacterial contamination, a discussion too involved for this book review.)

Also, from a historical point of view, the opening sentence in the "Encyclopedia Britannica" article on Gastronomy reads: "The first significant step towards the development of gastonomy was the use of fire by primitive man to cook his food." There are in fact prehistoric cave paintings such as those in Les Trois Frères in Ariège, southern France, depicting these gastronomic events. These sites date from 15,000 - 10,000 B.C. Our ancestors apparently had a yen for cooked meat going back many thousands of years. Not for nothing was Prometheus, the bringer of fire, considered the culture hero of the Greeks.

Nevertheless, I am prepared to admit that rare or even raw meat may have a role to play in the dietary control of cancer. Nicholas Gonzalez, M.D. of New York City has observed that some of his cancer patients tend to thrive on diets that include fatty and very rare meats. These tend to be particularly the leukemia, lymphoma and multiple myeloma patients. Dr. Gonzalez is not saying this to promote a book or to entice people to his clinic. I can only assume that this is an honest observation on the part of an intelligent and innovative clinician.

So there is some precedent for this in at least the holistic end of medical practice. But Aajonus takes it a few giant steps further. He believes that raw food and particularly raw meat is a cure for whatever ails us, especially but not limited to cancer.

Aajonus is the type of person we have all met: the health food nut with the crazy diet that will cure everyone of everything. He himself has done everything, and his Theory can explain everything. He is pure California: has a cantaloupe- and honeydew-colored kitchen, paints houses, does a little acting (on "General Hospital") on the side. His jacket photo is a glamourous head shot.

He tells us he lived in the California desert for years, met fabled American Indian medicine men (long departed) on vision quests, and has certain other-worldly connections (hence, I assume, the "from the planets" name). He also has suffered­and cured himself of various diseases and conditions: first and foremost cancer, but also a massive dose of "death head" mushroom poisoning.

There is an essential sloppiness to the science of all this. I do not trust his scientific "facts" or misuse of statistics. For instance, like many people in the alternative health movement, he is very down on vaccinations. At one point he trots out some figures to "prove" that "polio vaccines create polio" (p. 270). The figures he gives purport to show that in five areas there was far more polio reported in 1959, after compulsory vaccination was introduced, than in 1958, before it was required. No references are given for these figures. But even if they are true, they are probably part of a larger picture whose context is not provided. Polio is an epidemic disease and so large differences are to be expected in occurrence rates from year to year. By Aajanous' own reasoning, there should be explosive outbreaks of polio in the Western world by now. But, as every child knows, the opposite is true. The rates of polio plummeted following introduction of the Salk and Sabin vaccines. Many advocates of alternative medicine paint themselves into corners with this type of dogmatic reasoning.

Documentation Needed

There are many other scientific and factual boners in this book. But with all that I suspect that Mr. Vonderplanitz has a future in the world of alternative cancer treatments. He claims to have cured himself of multiple myeloma (a cancer of the bone marrow) and also tells in some detail the cancer history of his former companion, Owanza di Mdina, who (he says) was diagnosed as having thirty very small malignant tumors in her spine, sixteen in her liver, six in her utreus, and innumerable nonmalignant ones in her brain. Instead of taking radiation and chemotherapy, she went on Mr. V's raw diet (p. 281). She is alive and well with no sign of cancer years later.

In a well-written introduction to the second half of this book, Mr. Ron Strauss writes that Aajonus "apparently facilitated 236 cancer remissions (of 240 cases) as well as many recoveries from heart disease, chronic fatigue and other serious illnesses." This 98+ percent cure rate is certainly of great interest to anyone who is dealing with cancer on a personal or professional level. We can assume that many of these cases, like Owanza's, were considered incurable by conventional doctors. This sort of claim cannot help but generate a great deal of excitement in the cancer world. The name of Aajonus Vonderplanitz may soon be on everyone's lips.

The problem is, On what basis are such claims made? How are Mr. V's proponents defining "remission" or "cure"? What sort of documentation can they offer? As I mentioned, my initial interest in this topic was stirred by the report on one patient. At the Arlington meeting, I looked at a copy of the blood work. It was very impressive and looked as if something remarkable was happening. But who is following up on this case? And are we sure that this man had not concomitantly been taking other treatments that might also result in the same effects. It is certainly impossible to make a case for anything based on one case.

Then what about the "236 cancer remissions"? If Aajonus can predictably get such results, he should be able to document them. No amount of paranoia about the medical profession will serve as an excuse for failure to do so. In fact, one of my disappointments with this book is the lack of documentation of his own case, that of Owanza's, or any of the other patients mentioned. Where were they treated? By whom? Exactly what conventional treatments did they receive? What proof is there that they are currently in remission?

Claims of cancer cures are social dynamite. They get peoples' hopes up, set them off on sometimes fruitless paths, just when there is little time to waste. And so claims should be made with the greatest degree of responsibility and circumspection. And advocates of alternative medicine should raise their standards as to what they are willing to accept or promote. We have witnessed over and over again the phenomenon of the "cure du jour." Kathy Keeton's apparent remission on hydrazine sulfate generated tens of thousands of hits to Web sites and calls to cancer agencies. I would not be surprised if Aajanous's book will set a similar phenomenon in motion.

I believe that Aajonus is sincere and that himself "walks the walk" of raw foodism. It is certainly conceivable to me that some individuals need and crave raw foods, even raw meats. Although I am healthy, I myself went out and bought raw nuts, nut butters, a wonderful jar of raw honey, and some raw cheddar after reading this book! For me, personally, this message is insidiously seductive. It is precisely because of this that our left brains have to get into the act and demand facts to support instinctual urgings.

For cancer patients, there is a lot at stake.


* We Want to Live: Out of the Grips of Disease and Death and Healthfully (the facts), Carnelian Bay Castle Press, P.O. Box 7100-47, Santa Monica, CA 90406-7100, ISBN 1-889356-77-8, $29.95). I ordered it through Barnes & Noble.

Return to Fall 1997 Chronicles

 

Ralph W. Moss, Ph.D. is director of the The Moss Reports for cancer patients. Dr. Moss is the author of eleven books and three documentaries on cancer-related topics. He is or has been an advisor on alternative cancer treatments to the National Institutes of Health, the National Cancer Institute, the American Urological Association, Columbia University, the University of Texas, the Susan G. Komen Foundation and the German Society of Oncology. He wrote the first article on alternative medicine for the Encyclopedia Britannica yearbook. He is listed in Marquis Who's Who in America, Who's Who in the World, Who's Who in the East, and Who's Who in Entertainment (as a film documentarian). This Web site does not advocate any particular treatment for cancer. We urge you to always seek competent medical advice for all health problems, especially cancer. Before consulting our site please read our full Disclaimer statement.

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PN Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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May 18, 2009 06:30AM , edited May 18, 2009 06:31AM by snowyday

This Post was deleted by snowyday.
PN Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Nov 21, 2010 06:41PM TRS wrote:


I don't know how open your minds are but have you read about benefits of curcumin/turmeric for her2neu patients?

 

Because my mother was diagnosed with her2neu four years ago, I was forced to read and research about it. I saw some clinical trials showing curcumin's advantages including depleting cells of Her2/neu protein in short treatments in cellular experiments.

 

We cannot afford Herceptin and chemotherapy so what we did was, aside from the organic plant-based diet (almost devoid of animal protein), we made her took fresh curcumin tea almost regularly and some curcumin capsules (some integrative docs say that since curcumin has poor bioavailability/poor absorption, it has to be accompanied by 5mg of bioperine, which is black pepper in layman's term). As I write this I am still continuously researching on this plant (previously associated only with its yellow spice called curry, has been undergoing clinical trials in prestigious scientific institutions across the world--12 active clinical trials of curcumin are ongoing in the United States, Israel and Hong Kong.. Some of these trials are studying the effects of curcumin on colon cancer, pancreatic cancer, Alzheimer’s disease, psoriasis, epilepsy, gall bladder cancer and cervical cancer, among others.)

 

Saw this Philippine health article about Dr. Bharat Aggarwal of the MD Anderson Cancer Center in Texas.

 

The commentary (of Aggarwal) cited accumulating evidence showing curcumin’s molecular targets as transcription factors, growth factors and their receptors, cytokines, enzymes and genes regulating cell proliferation and apoptosis (cancer cell death).

 

One example showed that most human cancer cells overexpress epidermal growth factor receptor (EGFR) and Her2/neu, which ultimately stimulates the proliferation of cancer cells. “Cellular experiments in vitro have shown that short-term treatment with curcumin inhibits EGFR kinase activity cells and depletes Her2/neu protein,” Aggarwal said.

 

A previous clinical trial by Aggarwal and his colleagues has also shown that curcumin is safe even at high doses (as much as 12 g/day) in humans.

 

Despite the lower bioavailability, the therapeutic efficacy of curcumin against various human diseases, including cancer, cardiovascular diseases, diabetes, arthritis, neurological diseases and Crohn’s disease, has been documented. The enhanced bioavailability of curcumin in the near future is likely to bring this promising natural product to the forefront of therapeutic agents for the treatment of human disease,” Aggarwal concluded.


Here's another article on curcumin and her2neu:

Of significant interest to women is that curcumin appears to have a therapeutic potential for preventing breast cancer metastasis. In the publication 'Phytopharmaceuticals in Cancer Chemoprevention', Prof Aggarwal and colleagues they say that when it comes to HER2 positive breast cancers, curcumin down regulates the activity of Epidermal Growth Factor Receptor and expression of HER2/neu. The researchers say "curcumin depletes cells of HER2/neu protein". full details here: http://www.curcumin.co.nz/curcumin-story.htm

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Nov 25, 2010 04:13AM ishobie wrote:

my oncologist told me with the chemotherapy/herceptin treatments I had and now the 9 months coming of herceptin, my chance of recurrence is less than 5%, you really can't beat that. Herceptin has changed everything for HER2+ BC patients.

Try to think positive and do the treatments and move on, that is the best you can do right now

good luck

Isabel

4/2010 DCIS, IDC 0.7 CM, HER2+ 0/6 negative
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Dec 7, 2010 09:08AM Dakini51 wrote:

Thanks for posting this.  I am looking for alternative tx for my HER+ dx.  I am kind of amazed that I have found so little of that kind of conversation here.  In holistic health,we look at the whole body, and do our best to do no harm to any part of the body to cure another.  It's a way of looking at things that  appears to be completely unfamiliar to oncologists, and of course, pharmaceutical companies.  I am grateful to have choices, but I am very sceptical of choices that are harmful.  I am very fearful of the negative cardio effects of Herceptin, especially since my tumor was so small and not particularly aggressive.

Dx 11/16/2010, ILC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2+
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Dec 7, 2010 05:44PM jfrone wrote:

Hello all:  I was diagnosed with stage 2 Her2+ in April 2006 at the age of 32.  I had a mastectomy, chemo and 1 year of Herceptin.  My onc recently told me that with this type of cancer, if you haven't had a recurrence within 4-5 years, the chances of you getting cancer again is the same as someone who had never had cancer at all.  I am happy to report that I am just a few months away from the 5yr mark, and I am healthy and cancer free!!!

In addition, I had a baby 2 1/2 yrs ago (he was a huge surprise since I did not think that I could have any more children)!  Miracles are possible. 

I remember how difficult and scary it was in the beginning, but it does get better.  You will heal.  You will survive.  And your story will be a testimony that will help someone else.

 sending peace and blessings and healthy vibes your way.

 

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Dec 9, 2010 08:51AM Rubyluby wrote:

Many thanks to everyone who has contributed to this thread since I first posted it as a newly diagnosed BC patient in early 2009. Your comments and support buoyed me tremendously during those early dark days.

I am happy to say that I have nearly reached the two year mark and all is well with me. In fact all is better than it has ever been! I know it's a cliche - and I'm not jumping out of airoplanes (yet) - but having BC has given me a giant kick up the jacksie in all sorts of very positive ways. And shown me how to live in a full way. It has also strengthened my relationship and I am getting married next year to my darling partner, who has stood by me through bald, bloated and barfing and deserves a big, fat medal.

As jfrone wrote, it does indeed get better and you do heal, physically and emotionally. Life gravitates towards healing. Though it's hard to see any of this when you're newly diagnosed.

My love, peace and blessings to you all,

Lucy (aka Rubyluby) 

Dx 1/13/2009, IDC, <1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2+
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Dec 9, 2010 04:51PM twinsmom0606 wrote:

Hi

You are quite fortunate to have no lymph node involvement.  I, too, try to take a holistic approach to living.  We try to eat organic and do not eat foods having preservatives, food dyes, etc.  However, imho, and, as my oncologist told me when I informed him of how frightened I was of herceptin causing heart damage - "don't worry about tying your shoes with the train coming down the track".  Everyone must be comfortable with their own choices.  Since you have no lymph node involvement, I suspect herceptin, perhaps, may not be the life saver I believe it is/was for me.

Herceptin is a targeted therapy, though, and not chemo and is not cytoxic.

Diane

ER+/PR+, Her2Neu+ 2 nodes+ diagnosed 2/2007 

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Dec 9, 2010 04:52PM twinsmom0606 wrote:

Hi

You are quite fortunate to have no lymph node involvement.  I, too, try to take a holistic approach to living.  We try to eat organic and do not eat foods having preservatives, food dyes, etc.  However, imho, and, as my oncologist told me when I informed him of how frightened I was of herceptin causing heart damage - "don't worry about tying your shoes with the train coming down the track".  Everyone must be comfortable with their own choices.  Since you have no lymph node involvement, I suspect herceptin, perhaps, may not be the life saver I believe it is/was for me.

Herceptin is a targeted therapy, though, and not chemo and is not cytoxic.

Diane

ER+/PR+, Her2Neu+ 2 nodes+ diagnosed 2/2007 

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Dec 10, 2010 06:13PM , edited Aug 19, 2013 11:22PM by keeppositive

Hi,

I as diagnosed with Stage1 -1.5cm Ductal invasive carcinoma Grade 3 ER-/PR- and Her2 positive with no nodes involved 0/6. At first my doctor told me I had nothing that terrible. My surgery was on Nov. 11th-a lumpectomy.  He never mentioned Her2 pos.and did not explain it.(Even though it was in the biopsy report, prior to surgery, which I didn't see until recently.) He seemed to think I could have MammoSite  (internal localized seed type) radiation, because it was small and had not spread anywhere, but the oncologist radiologist said no because of the Grade 3 and Her2. The Medical oncologist I met with yesterday suggested I do TCH for 6 treatments every 3 weeks and Hercptin alone for the rest of the year every 3 weeks, plus 7 weeks of regular external radiation 5x a week. I am very worried about the Chemo, but even more worried about the Her2 pos. amd Grade 3 diagnosis.

The oncologist also told me about the Cold Cap to prevent hair loss from your head. I am so confused, because my doctor(surgeon-whom I liked alot) did not prepare me for this at all. He never explained Her2 or Grade 3 or prognosis or statistics. I have looked everything in my pathology and my biopsy reports up on the internet.  I am trying to keep positive, but this new info about Her2 and Grade 3 are really scareing me. The internet keeps saying that it is very aggressive and fast growing. How fast is fast? What am I looking at in terms of recurrance and or survival? The onc. said 20% chance of recurrance, but less with treatments. She said based on size of tumor-Stage1 and no spread to nodes it would have only been 5%, but Her2 and Grade 3 bring it up to 20%. 

I am trying to get 2nd opinion. Trying to see Dr. Hudis at Memorial Sloane Kettering. Have seen Dr Anne Moore at New York Presbyterian Weill Cornell.(She is head of Breast Onc. there. Dr. Hudis is head of Breast Onc. at Sloane.) 

 Any info would be helpful. How bad is the chemo treatment? the Herceptin alone, etc. ?? Help please.   

Dx 9/15/2010, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2+
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Dec 10, 2010 07:06PM suzieq60 wrote:

My onc said I had a 23% chance of recurrence reduced by half with chemo/herceptin. I had TCH x 6 and have just completed my year of herceptin. The TCH was tough the first time, but with the correct drugs to minimise the side effects, I got through it. I'd be worried about using Cold Caps, as I asked about them over here and the chemo nurse said they could prevent the chemo going to the brain. Whether she's correct, I don't know, as I never asked my onc. My hair has come back just as thick as it was but crazy curly and I'm 9 months post chemo. Some of the ladies on this board are being given herceptin alone, I don't know how you qualify for that. The studies done on herceptin have been in conjunction with chemo and they are said to work better together. I also had 30 rads over a period of 6 weeks. There's no way I would have refused the treatment given the HER2 Grade 3 reading.

Hope this helps,

Sue

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Dec 11, 2010 05:16AM keeppositive wrote:

Thank you Sue for your response.

I didn't mean taking Herceptin alone, I meant the rest of the year with Herceptin taken alone. What kind of drugs did you take to help with the side effects? Also, from what I've read the cold cap doesn't prevent chemo from going to brain, only to scalp, but who knows?

Thanks again and the very best to you.

Keep positive,

Nancy

Dx 9/15/2010, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2+
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Dec 11, 2010 09:05AM , edited Aug 19, 2013 11:22PM by suzieq60

Nancy,

No side effects once on herceptin alone except for a slightly runny nose very rarely.

The TCH however is another matter. I was given steroids to take the day before, the day of and the day after a treatment. Then when they wear off you come a big cropper as they tend to keep you a bit high. So 2 or 3 days after the 1st tx, I got really bad pains in the legs like something was eating my bones. The onc prescribed Digesic tablets evey 4 hours and 1 claratin tablet daily - this worked really well. The leg pains went after a few days and I only really suffered the first time. 

I also had bad stomach cramps and reflux which we fixed with Somac tablets. Also you mustn't get constipated, so I took Sennacot for that after making that big mistake once. You do get the runs too but that wasn't too bad for me - took a week or so for them to show up and only lasted a day.

I never had nausea owing to meds prescribed to take during treatment and for 2 days after. Food tastes yucky but by the third week you get your taste buds back.

So, you actually feel ok for one week out of 3. The second week is better than the first. The main thing is getting drugs to help. Once I had those, I got through it much better as I would start taking them before the side effect showed up.

I hope this doesn't scare you off. It's only 6 times and you get in to a routine. If you are going down this road - make sure you get a portacath in your chest - that is the best thing I ever did.

There's no way I would have refused this treatment because of the HER2 - I don't think you can afford to. We are so lucky it's available to early bc patients now - 5 or 6 years ago it wasn't.

Sue

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Dec 12, 2010 06:26AM REKoz wrote:

Hi Nancy-

Fellow BC hotbed Long Islander here. Your diagnosis sounds very similar to mine with only I was ER & PR+.  Mastectomy was my only choice since the removal of 2 papillomas along with the 1.2 IDC basically took any small breast that I originally had. So no radiation for me.

So in the terror of it all, I was at least comforted by the idea that I'd have surgery and be on my not so merry way. WRONG! I will never forget when going over the biopsy results with the breast surgeon. She pointed out this unknown HER2 thing as being triple positive and discussed the practicality of having a port installed during my BMX rather than as a separate procedure. HUH?? So I got the whole rundown on Herceptin with the caveat that I would be getting it first with chemo. I ended up walking out of there with an unsolicited script for valium!

I had always associated chemo with dying and at the time really thought that's what I'd rather do. I now understand how irrational that fear was. As you will read over and over, chemo is no walk in the park and presents it's challanges. But since I couldn't get Herceptin without it, I just knew I had to do it. Herceptin is truly a miracle drug for us HER2 gals who in the past had pretty poor odds. If you were not HER+, it would have made you triple negative which has now become the poorer diagnosis if the two. Look at it this way, your cancer was not fueled by Estro or Proges. but was by HER2. Herceptin can rob the fuel that may have caused your cancer. In the most unfortunate of situations, you are lucky there is something they can give you that highly increases your chances for living a cancer free life. Herceptin itself is easy, it's the chemo they have to give you with it early on that is tough. I'm almost 2 years out from my finishing everything and I'm here to tell you that I don't regret a thing. I did everything I could to beat the beast from the start. I move on now knowing that and praying that it was enough.

My heart goes out to you truly. You are at the most terrifying part of this whole BC journey. I can remember the feelings of despair as if it were yesterday. You can and you will get through it. Please keep us updated.

God  Bless,

Ellen

BMX 11/08, Abraxane/Carbo/x4 1/09 Herceptin until 1/10, Recon w expanders-1st exchange Dec. 09. Revision from 700 Style 20 to 600 Style 45-Oct 10 Dx 10/16/2008, IDC, 1cm, Stage Ib, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Dec 13, 2010 05:52AM keeppositive wrote:

Hello again,

Thank you ladies for your answers. I have read alot on these threads about side effects of both the chemo and the Herceptin and I see it varies greatly from person to person. I'm really frightened, but know I must do this! Does the Herceptin cure the HER2 or just stop it for awhile?

What happens after the year is over? How do they tell if you are clear of disease and if Herceptin is still working? My tumor did not show up on a mammogram, only on an ultrasound. I wanted to have a special test called  Breast Sensitive Gamma Imaging- it is a sort of Mammogrm with high dosage of radioactive dye and a very sensitive camera that can see thru dense tissue(which is the case for me) and can detect abnormalities as small as 1 mm(not cm). I didn't do it because the okay came the week of my surgery and I felt because they would be putting a radio active isotope in my breast for surgery to light up the lymph nodes to guide the surgeon directly to them, it would be too much radiation in 1 week. I was correct, because when they put the isotope in, that camera was in the room and when I asked the radiologist there about it, she said I was correct, because the radiation was 50X the amt. in the isotope. When I had surgery a 2nd tumor was found that didn't show up anywhere. The 2nd one was DCIS and the 1st one was DIC(the invasive kind). My onc. said I can do the Gamma Imaging after chemo, at my 6 mos mammo.and check up, to see if all is clear. I am worried because they didn't see the 2nd tumor at all and I had many ultra sounds to determine what other things were that showed up on my MRI. They-2 radiologists together-decided that both things that lit up on the MRI were benign and not even growths-one was a tangled blood vessel and the other was just a lymph node lighting up. That was what led me to investigate other methods of detection that would be more difinitive. I came up with PEM,which is like a PET scan for body, but just for the breast. That one was not so good for people with diabetes, which I now have. (I found that out about a month before I got the BC diagnosis.) Its been a grand year!!! The other test I found out about was the Gamma Imaging.

By the way is there anyone out there with diabetes2 that has been thru this treatment plan and how did it affect the diabetes??? Again, any help will be greatly appreciated. Thanks to you all and Keep Positive and good luck and Bless you all.  

I am worried about when I will start the treatment--at end of Dec. or beginning of Jan. My surgery was 4 weeks ago last Thurs.--on Nov. 11th. If this is fast growing, how fast is fast??? When I asked my surgeon and the 2nd opinion one that I saw, how long the tumor had been present, they both said any where from 3 to maybe 5 or 10 years. That is not very fast is it? Also it is too small to be detected when it starts out. Again a good reason to be doing Gamma Imaging test, especially for those with  dense breast tissue. 

Again Keep Positive and good luck to each and every one of you brave women!!!

Nancy

Dx 9/15/2010, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2+
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Dec 13, 2010 06:53AM lago wrote:

Nancy I was told I had a very fast growing tumor. I probably had it for only 4 years. From what my path report says it does appear to be a very fast grower (MIB-1: High proliferation index, > 20% )

I started chemo 5 weeks after my BMX. I hear typical is 6 weeks but nor more than 8 weeks. I started at 5 weeks because I healed well and my PS gave the OK.

How do they know Herceptin is working? If they removed your tumor and you don't get metastasis then it probably worked. They really don't know for sure unless you did chemo before surgery. Then the can see the tumor shrink. Granted if it doesn't work then you have wasted a few weeks with no therapy so chemo before can have it's pros and cons.

Part of the reason you are only on Herceptin for a year is you can become resistant to it. They also haven't seen a need for it in early stage. Actually they don't even know if you need if for a year in early stage.

Hang in there. Unfortunately there are no guarantees with this disease and treatment. Being stage 1 with no nodes statistically is pretty good odds.

DONE!! alturl.com/3o9ni • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIb, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Dec 14, 2010 02:12AM , edited Aug 19, 2013 11:24PM by 1marmalade1

I did chemo pre-surgery - my tumour was 5+ cm.  After 6 rounds of chemo (4 of them included Herceptin), the tumour had shrunk to less than half the size.  Followed up with mastectomy.  Am currently doing Herceptin only until next May.  I have had absolutely NO side effects with Herceptin - it is so much easier than the chemo routine.  18 treatments is a global protocol - it has been proven effective, so that's what the docs go with.

Marm Dx 11/11/2009, IDC, 5cm, 0/5 nodes, ER+/PR-, HER2+
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Jan 2, 2011 06:22PM keeppositive wrote:

Hello everyone,

Happy and a HEALTHY New Year to everyone, with all of us beating this disease forever !!!!

Well I'm staring treatment on Friday, Jan. 7th--it will be 8 weeks since my surgery-the Oncologist was on vacation for last 2 weeks. I am also going to do the Penquin Cold Caps, but hope it will save my hair, thus giving me one less thing to deal with. 

 I am curious, did any of you have and body scans or tests to see if cancer was anywhere else in your body? Or do they just rely on the nodes to tell them? My regular medical Dr.'s have all asked if I've had any other scans-- I thought that would have been done as well. I am told by men who have had prostrate and some other cancers, that they were given PET Scans of whole body to be sure cancer was not anywhere else.

I hope all of you are well and getting well!!!

Nancy 

Dx 9/15/2010, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2+
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Jan 3, 2011 07:57AM keeppositive wrote:

hi again,

Heard of a fascinating new blood test for detecting cancer and for tracking results of treatment.  The test can detect one cancer cell amongst billions in your blood. Check it out--Google Dr. Daniel Haber at Mass General and read articles about his new blood test.

Best to all!!

Nancy

Dx 9/15/2010, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER-/PR-, HER2+
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Jan 3, 2011 08:06AM InTwoPlaces wrote:

I had all the test imaginable, and they all come out clear (well, not my lymph nodes)

Keeppositiv, there is another thread about the new blood test, it seems like a big step forward!

Dx 9/16/2010, IDC, 1cm, Stage IIIa, Grade 3, 7/29 nodes, ER+/PR-, HER2+
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Jan 4, 2011 07:15AM myesan22 wrote:

I had a PET scan and had no cancer elsewhere. Unfortunately, I have a recurrence now 4 weeks post chemotherapy. Apparently neither chemo (6 sessions TC) or herceptin (still taking until August) are keeping cancer awayFrown Hopefully insurance will cover another PET scan to ensure this is a just a local recurrence.
Dx 5/28/2010, IDC, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Jan 4, 2011 02:07PM flash wrote:

hugs myesan.

multifocal multicentric IDC, DCIS, pagets et al. - er+,pr+ her2+++, mast,chemo, ooph, hyst Dx 10/10/2007, Paget's, Grade 3, ER+/PR+, HER2+
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Jan 5, 2011 02:15AM blondie45 wrote:

myesan22 - sorry to read that, hope everything turns out okay.

Dx 4/14/2009, IDC, 1cm, Stage IIIa, Grade 3, 6/18 nodes, ER+/PR+, HER2+

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