Herceptin Use and Prognosis for Stage IV

[mamacze]

Hi Girls,
I am new to this site but I am frustrated with the average prognosis for us stage IV folks who are taking Herceptin. Specifically, I am ER/PR -, Her 2 +++ and grade 3. I have mets to the lungs; and am taking Herceptin weekly. (for months with navelbene, now herceptin alone). My oncologist says he thinks he can give me 10 years. But every web site and indeed a 2nd opinion oncologist at Sloan says the average life expectancy from date of diagnosis is 2 years. What is your experience? This is depressing; I so want to see my 10 year old thru to his graduation. Please share your experiences girls!
Hugs and blessings,
Kim (mamacze)

[Kim in CA]

Hi Kim, Great name!

I just wanted to tell you, that if there is anything I have learned on this odyssey, nobody knows what someone's prognosis is! We are all so different. I was originally diagnosed in Feb. 97, had recurrence to my liver in June 2001. The mets to my liver were widespread! Here I am 3 1/2 years later with no evidence of disease(NED). I was able to see my kids grow up and even welcome my first grandchild into the world on Mother's Day! I was able to get into the Her2 Vaccine trial at U.W. and just finished up my last vaccine on Dec. 2. I was told by one doctor in 2001 that I probably had about 18 months! So you can't listen to statistics, cause we are really in uncharted territory when it comes to being Her2+. My game plan has always been to be agressive with my treatments and thanks to this website, I have learned the importance of regular scans and brain MRI's.

Wishing you all the best, Kim in CA.

[mamacze]

Hi Kim in CA,
Thank you so much for your encouraging words, it is so helpful to hear from anyone that is in the same or a similar boat. It is even helpful to hear from sisters that aren't doing as well, just to have someone to compare notes with!
I would LOVE to be in a vaccine trial; I emailed a few sites and was told I was not a candidate. When will the vaccine be available; do you have any clue?
Kim in CT

[mamacze]

Just wanting to move this back to the top. Please, herceptin users, where do you stand relative to your prognosis?
Kim (in CT)

[michele u]

mamacze,
You would qualify for a vaccine trial when you get to NED right? I thought that is what I've been hearing from them.

[mamacze]

Hi,
I don't know how I would qualify for the vaccine or who is still accepting clients; I will raise this with my oncologist at my next visit (2 weeks)...can any of you shed light on this? The 2 researchers I contacted said as long as I am getting herceptin, I am not a candidate. I wonder how many of us (if any) are 5 years NED?
Kim (in CT)

[Brian]

briandod@aol.comDear Kim,

Just to give you a little hope. My wife was diagnosed 13 years ago in 1991. We took our adjuvent therapy and 10 years later suffered a recurrance to her liver and lungs. Long story short, we are now NED after a complete response to Herceptin and we are participating the the U of Washington vaccine trial. She has been on Herceptin for 1.75 years now and we hope that we can continue this for a long time with the help of the vaccine.

Do not loose faith, be aggressive and you can battle this disease successfully.

Brian

[mamacze]

Oh Brian,
You just made my day; thank you so much for your encouraging post!
I wish I could get my hands on the vaccine... I will certainly be asking my oncologist about it during my next visit! I am grateful that you took the time to respond; and your words do provide some hope and comfort.
Please give my best to your wife; and if she ever needs a sister to vent to; tell her to feel free to email me at czefamily@comcast.net...even though it says czefamily; I am the only one with the password to this address; my kids are too busy AIM'ing their friends to bother with email.
Yes; you too, keep the faith.
Kim (in CT)

[*_Annemarie_*]

I did not qualify for the vaccine because my HLA markers were diiferent then the one's they are testing for. They are looking for HLA 2 and I am HLA 24. I NED, Stage 4 but my markers are not a match.

[Lolly]

There are 2 vaccine studies at University of Washington that are linked on the News page of this site; the one I'm enrolled in is the Phase I-II Herceptin/Vaccine trial and allows Herceptin use, and also allows one to have either STABLE DISEASE or be NED, although the study outline says NED...don't know why they haven't fixed that. As Annemarie says, you do have to be HLA-A2 positive; that's a marker they will use to track the antibody response. Here's the link to the Herceptin/Vaccine trial:

http://depts.washington.edu/tumorvac/synopsis2.html

[mamacze]

Thanks Lolly for that update; I applied and am in this study if my CAT scan today (!!!) comes out clean and my liver function tests are normal...so I am keeping fingers and toes crossed and am praying like mad...!!!
There is also a fabulous vaccine in the works at MD Anderson that (unlike the Seattle vaccine which induces a one prong killer T cell immune response) has invoked a 3 prong immune response in mice...the researcher, Larry Lachman, is all set to bring it to clinical trial for us ladies; he is just waiting for funding to manufacture the vaccine...I called him...he needs less than $100,000...(ugh...the politics of waiting...)...Joe had initiallly alerted us to this...Kim

[Lolly]

Kim, I'll be keeping MY fingers and toes crossed for you also!

Love, Lolly

[Phylicia]

Be positive in your outlook. I have been on herceptin for nearly 6 and one-half years (since October 1998) and I continue to be NED.

Phylicia

[*_joy_*]

Hi Kim, I sooo understand that heavy feeling when those dumb numbers come up. I feel blessed everyday to be here as we all do, but we want more. i have been stage IV officially since 2002 and had a pretty grave situation. But i have responded very well to treatments (another blessing). when i deal with my regualr oncologist, who I like, i feel like they see me as an anomaly and that they are just waiting for the other shoe to drop, which is a very contagious feeling. i think many of us fight that feeling daily already and we don't need anyone else augmenting it. BUT when i see my bc specialist, i feel like there is no reason to think i am any different from anyone else. He rattles off the success stories, "I've been treating one woman, stage IV, for 13 years-she's traveled the world raising her kids, etc. i got another woman, 9 years with liver mets on herceptin-selling real estate in Vegas having a blast, i have another woman 9 years with liver mets-doesn't even have the help of herceptin and doing great..." he can go on and on and he often is telling me of different cases, not just the same. He talks about the days in the future when i come to see him and I'm showing him graduation pictures (my girls are 8 and 6) and grandkids. And i tend to trust that as he is so hopeful about what is happening in bc.

i just wanted to share that encouragement with you and hope it helps. i am always looking for the "long-termers" myself and love it when I find them.

OH, i work for a breast cancer foundation (we pay for women in treatment to have complementary care services) and we have one gal who has had stage IV (brain and bone) since the late 90's. She shared with me that she met some others 5 years at a place here in CO called Spa for the Spirit, all stage IV. they are having a reunion and of the 10 women who went to Spa for the Spirit, 7 of them are alive and well. I hope that was encouraging, i meant it to be, sorry if it wasn't. i'll stop now.
Love to you kim,
joy

[al from canada]

Dear Annemarie and Kim,
I have been in touch with the Seattle team a number of times and my understanding is that within the next month or two, they will open up the vaccine trial to NON-HLA-A2+ candidates with concurrent herceptin use.
Give Patty the research nurse a call and ask about upcoming trials.
Regards,
Al

[mamacze]

Oh Joy and Phylicia,
I love hearing these stories; please keep them coming...Joy I understand why your mom gave you that name...it is so encouraging to hear about the women who are getting close to 10 years...it is such a big bucket full of hope....your oncologist is unbelievable; he sounds like mine ... I always tell mine he must have had a minor in psychology...and Phylicia your own story is so uplifting...and Joy...where is that spa for the spirit??!! We should all join them...
Love, Kim (from CT)

[Think Pink]

Hi there, I know frustrating it is and wanting someone to be able to tell you how long we have left. I as well am ER-, HER2+, and have mets to my lungs. All I can tell you is that my onc told me about five months ago that I had about a year to live. I was diagnosed in May of 2003. I have inflammatory breast cancer. Even though she told me this, I really don't feel like I'm checking out in what would be about 7 months. So, I guess maybe a third opinion wouldn't hurt. We can never have to much information. And, I would also suggest you look up information about your specific type of cancer on the internet. That is where I learned most of the information I got about mine. If you ever need to vent, feel free to email me anytime.

Martha
FisherRN2B@aol.com

[al from canada]

Dear Martha,
12 months ago my wife was told she had 2 weeks to live. Go figure!
Al

[*_kath_*]

My onc never prognosticates on how much time is left and I like that. He feels there is always somewhere else to turn and something else to try and I get that feeling from people on this website too. We are not a statistic. Keep hoping for the best and doing everything you can to go after the disease to keep it from progressing. I have been dealing with liver mets for a year now and am ER/PR - , Her2+++ also.

[Gina]

Kim, welcome,

First of all, I really think the oncs should just lose the Prog thing...I mean, hey, when are they EVER right??? I am ER-PR-her2 +++ have had all kinds of mets and recovered and regressed and recovered...blah, blah.. thanks to herceptin alone since April of 1999 when I officially became Stage IV--what is that 6 years plus out now?? I was told at diagnosis (age 33) that I would never see my son, then 6 years, finish first grade...but surprise, he is starting high school this fall...smile. Time goes too quickly.

Yes, some of us have manuevered our way through the system to live many years. I am 8 out from original Dx. For a while, I, too, was considered somewhat of an anomally, but now, many folks are using herceptin to their great benefit. I am sure you will, too, but it may not be the easiest thing to deal with at times...and you must INFORM yourself by reading this site and doing your own research as much as time will allow. Stay ahead of the game and you will be around to blow out more than 100 candles on your cake because the one thing living through all this does is it makes you a bit of a "bionic woman" (smile)...you are probably too young to remember that old tv show, but seriously, I am sure all of us on here have been strengthened in ways we can not enumerate by going through this experience. What a ride...smile. If you are open to it, you can learn a lot and meet a lot of great people and inspire others even as you, too, have been inspired...

Best of luck to you,
Gina

[mamacze]

Dear Gina,
You are absolutely incredible! Thank you for your pearls of wisdom and they are indeed pearls.
Yes, the more I go on with this dratted stage iv, the more I begin to feel like a bionic women (or as my kids say; "Wonder women!).
Since I was originally diagnosed, I have found myself on herceptin, involved in the Seattle vaccine trial and now on a raw veggie, vegan diet. Frankly I have never felt better and if it weren't for that darn weekly herceptin, I might even have moments of forgetting !
Oh well, thank you again for your pearls.
Love Kim

[eric]

Kim,

I also live with fear of what life would be like for myself and my 2 kids (13 and 9) without Caryn, but I hang on to the belief that the rules have changed and continue to change dramamtically in short periods of time. I find it helpful to focus on short windows. As an example, within the next 3-5 years how much better will they be able to manage this disease than they are now? I believe significantly. How soon after that will there be a cure? All it takes is ONE discovery!

As a result of all the time I spend researching and reading, I wouldn't be surprised if we're soon faced with an overpopulation problem as a result of all the medical advances that are being made at an astonishing pace. Imagine that!!! It seems that technology has allowed us to accelerate the discovery process so dramatically and so quick that....Live, Love and Be Happy!!!!

Best regards,
Eric

[Andrea Barnett Budin]

Dear Kim,

I've never been on this site before. My husband just found it. I was diagnosed with 4th stage lobular breast cancer in '95. I had extensive mets into the liver in '98 (around when Her-2 was newly discovered and Herceptin was still in clinical trials and unavailable to the general public). 1 month after my 2nd diagnosis, testing 80% positive for HER-2, Herceptin was fast-tracked. I started taxotere w/herceptin in Nov. of '98. Taxotere was every 3 wks through May '99. Herceptin was once a wk, no matter what, for yrs. Since May '99 I have been NED (no evidence of disease). A few yrs ago I began triple the dosage every 3 wks (waiting a year while the new protocol was being tested in France). I now do every 4-month CT scans (chest/abdomen/pelvis) -- graduating from every 8 wks. to every 3 months to this. I continue to show NED. I do ECHO cardiagrams every 6 months, to check for possible heart failure symptoms, due to possible side effects of Herceptin. MY EF (Ejection fraction is above 50, which makes me good to go). I have a small amount of peri-caridial fluid around my heart since Taxotere. That remains stable. The fluid around my lungs from Taxotere disappeared after use. I do pelvic sonograms every 6 months to be told my ovaries are visualized and beautiful. I feel really good. Some dipping of red blood cells (doing CBC blood tests with ea. treatment) -- so I now get Aransesp (which does the job, boosting me and my energy level, and lasts longer than Procrit). I was diagnosed at 50, post-menapausal. Reading the statistics, I was given less than a 15% chance of surviving 2 yrs. I AM A PERSON, NOT A STATISTIC. And besides, "someone" has to fall in that little group! WHO ARE THEY? I BELIEVE THEY CAN BE ME -- AND YOU!! I decided to join that club, emphatically. I meditate, go deep within and connect with a power that activates my natural ability to self-heal. It grants me strength, courage, joy and peace -- knowing, beyond all doubt, that I will survive and thrive, that I am empowered -- and so is EVERY ONE OF US! I live each day full of love. awe and gratitude (for my personal empowerment and for the gift of each new day).

Sending healing energy and prayers... Anxious to hear back from you (noting your posting is not current). BE WELL!

With love,
ANDREA (Andi)

[Julie2]

Andrea,

I am so inspired about your story. I feel so happy and enrgized when long time survivors like you visit this site and give us courage to go ahead with the life.

Thank you so much,
Julie

[Amy]

Andi, What an inspiration you are. Thank you for sharing!!
Love, Amy

[mamacze]

Dear Andrea,
Where have you been girlfriend?! You should have joined this web site years ago...with your experience and knowledge; you have a lot to share!

Thank you for sharing your story; I continue to be amazed at the number women who are 5 years years, 6 years, and now you at 10 years survival post mets diagnosis....amazing. I often wonder about what is different; I have to believe that all of us at diagnosis make changes in our lives; spiritual, dietary, and good grief; even our outlook on life...embracing every little stitch of life with joy. And yet; what sets the "winners" apart from the "losers"? I guess we will never know; at least in this life time.

As far as I'm concerned; I think all the women on this web site are winners! Please stay with us Andrea; you are very inspirational and you have alot to share!

Love Kim from CT

[Andrea Barnett Budin]

Yes, 4th stage breast cancer (since '95), 80% HER-2+, ER- (since mets into liver in '98) and here I am -- joyful and serene! My spiritual journey began long before I realized it. I always believed in the mind/body "phenomenon" (since the '70s, when PBS began explaining startling and awesome results). The idea resonated instantly in me. Then, after being initially scared to death by the stunning reality of having cancer, I quickly rallied. I became full of something far greater than hope. I truly BELIEVED I had the power to heal myself! And so do we all! We have to reprogram our indoctrinated belief system (from society, parents, etc.). Our minds are like computers. They require reprogramming from time to time, updating our belief system to incorporate fresh insights and the natural evolution of thought itself.

When I was hit the 2nd time, I was at first decimated. What had I done wrong? How had I failed? I'd been instructing my body to heal and stay healed! OH. HER-2? What's that? I get it. IT'S RESPONSIBLE FOR 20-30% of breast cancer! It's a defective gene that overproduces a certain protein and causes cancer. That's what ca is -- out of control exponential overproduction of cells. So -- they know what causes "my" kind of BC! That's great. Cause the same doc who discovered all this at UCLA also developed Herceptin -- to CORRECT the defect. (In my mind, it's like insulin for a diabetic.) I know -- being HER-2+ means you have a very aggressive ca. BUT -- they know what's causing MY ca! AND -- they know how to fix it!! I became elated. Herceptin is our magic bullet.

Add to the recipe a totally positive ATTITUDE, belief in your power to heal yourself along w/ certain EXPECTATION -- and you've got a recipe for success. VICTORS/SURVIVORS aren't just lucky. They KNOW they are calling their desired destiny to them. They own that power. And they thank the Universe, God, their Source, their Creator every day for the gift of each beautiful new day and for their personal empowerment!

I meditate -- eyes closed, focusing only on my breath, driving all mental chatter away. (I breath in through my nose, taking in fresh air and new LIFE, hold on for a bit, energizing my SPIRIT, and then exhale, blowing the air out slowly and deliberately through my pursed lips, kissing all negativity goodbye.) I VISUALIZE myself FAR INTO THE FUTURE.

I have lived to see 4 grandchildren born. What a blessing! The 1st was born in '96, 1 year after my initial diagnosis. After '98 (my met into the liver) I knew I had to hold on to be at her wedding! I see myself clearly there, standing, clapping, smiling, looking ebullient, surrounded by my family and friends (as the bride and groom toast on the dancefloor). I live each day with that vision in my heart. I reject those creepy scary thoughts as fast as I possibly can. I embrace my wellness with clear, conscious intent, focusing all my energy on remaining in remission w/NED. I live with my heart open to receive pure Universal LOVE. It fills me up to overflowing. I offer it generously to everyone I meet. No, I didn't talk to strangers for most of my life. NOW, I do. And that love is returned to me tenfold. Friends tell me I am radiant. They stare at my face. They want what I've found.

I pray I've managed to impart the message to YOU.

With love and healing energy,
ANDI

[Joy]

Your post made me cry with joy. Thank you for sharing Andi!

[Lani]

I truly salute you survivors. Dr. Dennis Slamon quoted a one year average survival after dx of metastasis of her2neu positive breast cancer vs. 2 year average survival after dx of metastatic her2neu negative breast cancer--that being before herceptin.

Would it be too much trouble to ask each of you who have so generously posted your experiences with Stage 4 her2neu positive breast cancer to identify whether you were ER+ and/or PR+ and how much so?

Dr. Stephanie Jeffrey of Stanford University, a breast surgeon who has given up surgery to devote herself exclusively to research into breast cancer markers, has recently changed the long-held belief that only 10% of her2neu positive tumors are also hormone receptor positive. Her work indicates that it is between 45 and 55%. She also believes by looking at the multigene array results of these tumors that they fall into 3 different groups, each with a different prognosis.

Last week's HERA results were the first to report that Herceptin worked equally well in her2neu+ patients who were hormonal receptor positive as in those who were hormonal receptor negative. Until now, patients who wer both hormone receptor positive and her2neu positive had no statistics to reassure them as to whether they could hope to do as well as the other her2neu positive patients on herceptin.

I was wondering if our subset of patients who contribute to this site could
corroborate this--that is, are there hormone receptor positive patients among those who have beaten the odds and survived with Stage 4 disease and if there are, did your treatment also include antiestrogens or AIs?

We are all so indebted to you for pioneering the way-- thank you for letting us learn the most we can from your experiences !

Lani

[Lani]

I truly salute you survivors. Dr. Dennis Slamon quoted a one year average survival after dx of metastasis of her2neu positive breast cancer vs. 2 year average survival after dx of metastatic her2neu negative breast cancer--that being before herceptin.

Would it be too much trouble to ask each of you who have so generously posted your experiences with Stage 4 her2neu positive breast cancer to identify whether you were ER+ and/or PR+ and how much so?

Dr. Stephanie Jeffrey of Stanford University, a breast surgeon who has given up surgery to devote herself exclusively to research into breast cancer markers, has recently changed the long-held belief that only 10% of her2neu positive tumors are also hormone receptor positive. Her work indicates that it is between 45 and 55%. She also believes by looking at the multigene array results of these tumors that they fall into 3 different groups, each with a different prognosis.

Last week's HERA results were the first to report that Herceptin worked equally well in her2neu+ patients who were hormonal receptor positive as in those who were hormonal receptor negative. Until now, patients who wer both hormone receptor positive and her2neu positive had no statistics to reassure them as to whether they could hope to do as well as the other her2neu positive patients on herceptin.

I was wondering if our subset of patients who contribute to this site could
corroborate this--that is, are there hormone receptor positive patients among those who have beaten the odds and survived with Stage 4 disease and if there are, did your treatment also include antiestrogens or AIs?

We are all so indebted to you for pioneering the way-- thank you for letting us learn the most we can from your experiences !

Lani

[Andrea Barnett Budin]

Hi!

Initially diagnosed in '95 w/4th stage lobular breast cancer. What I felt was a general hardness of my entire breast. Having turned 50 and noting many physical oddities, I just kept checking monthly (and wondering). I never had a lump. Friends who had (benign) lumps and were checked every 6 months by BS told me to look for a hard nodule, like a "marble" or a "pea". Was on heavy dosages of progesterin (to help my peri-menstral heavy bleeding almost non-stop, though I begged for a hysterectomy, hating all surgery but feeling my body was totally out of control). I also suffered from incessant hot flashes which were maddening. They put me on hormone replacement therapy which helped. In retrospect, I still wonder if all that stirred up a hornet's nest.

Had a mastectomy and flam trap reconstructive surgery. (The tumor was so large, they could not save the skin, nor did they bother to shrink the tumor before surgery due to its size.) Had a port implanted, as my veins were impossible to find and collapsed when they were. Did 4 Adriamycin + 8 CMF -- treatments every 3 wks. ER borderline -- they put me on Tomoxifen, hoping I might derive "some" benefit from it.

In Aug. of '98 (after 3 every 3 month blood tests showed a "very slight" elevation in liver enzymes, and after being told by 3 different doctors that it could be coming from anything -- when I questioned the anomaly -- I was consistently told "I wouldn't worry about it. It's very slight.) Finally, I said I am worried about it. I had often questioned why we first liners weren't given continued CT scans (chest/abdomen/pelvis) as during treatment every 8 wks. Not even once a year thereafter. Well, I asked for a liver sonogram. I didn't even know to ask for an "abdominal" sono. I just knew I wanted my liver looked at! The radiologist kept looking and looking and then apologetically said he couldn't be sure what he was looking at and had to recommend I go for a CT scan. The scan showed multiple tumors on my liver. They did a liver biopsy and it was malignant. I was told (by a truly caring but floored doc and father of 3 daughters) that what I had was "Inoperable. Incurable. And you will be on long term chemotherapy for the rest of your life." I was stunned!

Got 5 oncological docs' input. Was told to flush my Tomoxifen down the toilet and never take it again. Was now told I was ER-. I was never given a # to go along w/that. But was told that the drug may have caused my new problem. Was found to be 80% HER-2+. 1 doc said Navolbene. 1 said Taxol. 1 said Taxotere because I had a highly aggressive cancer and that chemo drug was the most aggressive one they had in there arsenal at the time. I tried, but couldn't qualify for Herceptin clinical trials (due to the Adriamycin I'd originally been given). They told me to move fast. Taxotere was showing the best results combined w/Herceptin and it would hopefully become available to ALL. At the time there was a lottery system. Women given 3 months to live w/Her-2+ results were turned away and left to die. The FDA fast-tracked Herceptin and it became available to all of us around 9/30/98. IT WAS A GODSEND! I believe it saved my life.

It was one nasty drug. I had almost all the possible side effects but found myself believing again in my ability to rally and heal myself. I hit rock bottom and then began to soar. Every 8 wk CTs showed a little bit more and more of shrinkage of ea tumor (which were measured ea time precisely). My husband used to take the square root and show me an even rosier pic of my situation. I was slowly but surely getting there. I did Taxotere from Sept. '98. They added Herceptin in Nov. '98. After my May '99 CTs I was told by 2 different radiologists that they believed what they were looking at were the dead remains of tumors (cyst-like). I had no evidence of disease.

I continued Herceptin every wk no matter what (despite low white bld cell #s or anything). I stuck w/the program WEEKLY till Jan. '01 when I began the TRIPLE DOSAGE EVERY 3 WKS (w/clinical trials in France for 1 yr showing the new protocol lost no efficacy). I love this new deal! It's a real treat. Like a holiday. And it allows me to do a bit of traveling. I was getting my Herceptin (in Fla or NY) every single wk without fail. No messing around w/the proven protocol.

I go every 6 months for ECHO cardiograms to check the possible heart failure issue out. I go every 6 months for pelv sonos (in NY, where the radiologist performs the procedure and gets more accurate results, visualizing both ovaries -- digging hard, and decreeing them "beautiful"). In Fla a tech does the probing and a radiologist signs off on the report. Not for me.

By the way -- I know well the subtle signs of docs who know the STATS and look at you as a rare bird. I was treated as "the miracle patient". After a while, it got tedious. My favorite doc tells me he has come to "expect" good results from me. He's proud of me. He sets the bar high and is always encouraging. Friends w/BC who have docs that are at a loss as what to do next depress their patients to the point of being scared to death. Literally. That's not the doc you want. Docs who say you ask too many questions are not the doc you want. Docs who don't call you back the same day are not the doc you want. And though I love ea of my docs and truly believe ea 1 is brilliant -- they each have something different to add to the mix. And it is all invaluable. You want multiple opinions, from docs independent of one another, not doc friends who tend to back up what the other doc said.

Believe in your power to heal yourself. Trust your instincts. Listen to your Inner Voice. Make your intentions clear to your body. Use your thoughts to direct your immune system and all your body parts. You have that power. Fill your thoughts with certainty and positive expectation, and live each day joyful and serene, KNOWING you are going to be a survivor. Command your body to perform. And surround yourself w/positive people who admire your strength and courage. When push comes to shove -- you are so much stronger and braver than ever dared imagine. Reach for grace. And smile. THAT'S WHAT SURVIVORS DO!

With love and healing energy,
ANDI

[Becky]

Way to go. Your message is very inspiring and what I believe is absolutely true.

Thank you for sharing.

Becky

[Lolly]

Andi, thank you for lifting my spirits when I needed a boost.

<3,
Lolly

[mamacze]

Andi,
Your words of up and down and surviving, yearning for life, loving your life and feeling on top of the world are a wonderful gift for us all; thank you for sharing.
Love Kim from CT

[al from Canada]

Hi Kim,

I just read your post...better late than never!
Kim, you've been on the site long enough to know that we only accept the diagnosis and not the prognosis (some one on our site coined this...speak-up because I forgot)
I just came back from SABCS and after meeting Ginger; 10.5 years out of liver mets and is the picture of health and still on herceptin.
There are many of ladies on this board, and I feel safe to say the vast majority, who have beaten the stats. In fact, just recal how many board members we have we lost in 2 years....3 or 4??? Out of 400??? How many have been 5 years out....
There are so many things coming down the pipe, right now stress is your biggest enemy.
Enjoy the holidays, family, your cyber-friends, and try not to worry.
Take care,
Al

[al from Canada]

Andi, You are truly inspiring...please keep it up and be an example for all to follow.
Al

[Toril]

Must be a record?? I think it says all about how important the question is to all of us: How long do I have? So, please post - be a inspiration for others!

Myself I was diagnosed with stage IV in February last year. Mets to liver. After several months with navelbine and herceptin I am now considered NED.
Feeling great, much more hope for the future than one year ago.

Best of luck.
Toril

[PDBudin@AOL.com]

Hi Toril!

Good for you! The Victors in Life are the ones who KNOW -- WHAT YOU THINK ALL DAY DETERMINES THE OUTCOME. Thoughts are ENERGY. Positive, determined, focused intention and expectation may be wordless thoughts, but they are still MESSAGES sent to your body, at the very least subconsciously, as commands to be followed. I also believe that Energy goes out into the Universe, is sensed and responded to (by some as yet uncodified Universal Law) IN KIND. Strong belief and faith in your ability to heal yourself attracts abundant positive Energy to its source -- the thinker of the thoughts. The mind/body connection is real.

If you feel scared, anxious, concerned -- that is natural. Allow those emotions to be felt,and experienced, and then release them, as fast as you can. CHOOSE to replace them with thoughts full of -- I AM STRONG, BRAVE AND DETERMINED. HEAL. HEAL. HEAL. STAY HEALTHY AND WELL. I AM STABLE. AND GRATEFFUL WITH EACH DAY FOR THE GIFT OF EACH DAY, FOR MY HEALTH AND FOR MY MANY BLESSINGS. Humble appreciation for your PERSONAL EMPOWERMENT is essential. It is the RIGHT THING TO DO. It is full of LOVE!

Consciously remain OPEN to Universal LOVE, which is infinite. Let it fill you up to overflowing. Bring it to every experience you have. Offer it to every one you encounter. It will be returned to you tenfold. I promise.

I just had my every 4 month CT scans, which confirm -- I AM STABLE. I go every 3 wks for a triple dose of Herceptin. This is a spring break/vacation from 3 yrs of going every week. I have an ECHO every 6 mnths, to be certain the moniclonal antibody's toxicity isn't effecting my heart, including my EF (ejection fraction). My body is holding up, after 7+ yrs of Herceptin. I go for pelvic sonos every 6 mnths, to be told my ovaries look beautiful.

I am going to Ca 2/1 to see my daughter, son-in-law and baby Asher turn 2. Pamela is expecting another in July. Since my initial diagnosis ('95) and a recurrence into the liver in '98 (we now know due to my 80% pos HER-2 gene) I have lived to personally greet 3 grandchildren (in Boca) as they drew their first breath (in '96, '99 and '04). I remain confident in my healing powers, which we ALL have, and don't mind that some call me a walking miracle. YOU CAN BE A MIRACLE TOO. You only have to BELIEVE, feed your thoughts and nourish your body with its ideas, vividly see yourself far, far into the future and keep focused on your wellness. (I have chosen to always see myself at my now 9 yr old granddaughter's wedding, blissfully surrounded by family and friends and, of course, much LOVE.)

Sending you love and healing energy... KEEP UP THE GOOD WORK! You're doing a great job!
ANDI

[DeeM]

Thank you for this wonderful thread. this was my first time on this site but I have been on Herception for 4 years and have really began to question how long this could go on. So to see some of you on Herception for 9+ years have just made my day. Thnak you for the little piece of hope we all need every day!

Dee

[Andrea Barnett Budin]

This is dedicated to the HUSBANDS, SONS and DAUGHTERS and SIBLINGS OF BREAST CANCER WARRIORS!

A new friend recently expressed his fear about his mom w/BC 5 yrs ago, HER2+ w/3 nodes involved. He says every single day when he wakes up he is scared about the cancer coming back. I remember, back in '95 when I was first diagnosed, waking each morning, wondering what time it was, did I have any places I needed to be, etc. Then -- BAM! I remembered. I have cancer. And then, I'd think how scary that was, and start letting my mind go wild w/all sorts of imaginings. THEN, I learned to stop doing that. Yes, you have to feel your emotions, even the negative ones, but you must make a conscious effort to replace them w/ thoughts like I HAVE THE POWER TO HEAL MYSELF. I HAVE THE POWER TO NOT BE VICTIMIZED BY MY THOUGHTS. I chose NOT to be haunted and taunted by horrid ideas and visions.

But what I realized when my friend told me about his mom and his being scared all the time, I also remembered thinking, back in '95, that it actually seemed easier to be me, the patient, than to be my husband. If you are the one watching someone you love go through cancer, surgery, chemo, the side effects, the tests and scans and waiting for the results -- you have a great burden that must be recognized! Paul told me that if he could he would take the chemo for me. I honestly believed him. The look of anguish on his face, the look of helplessness was real. He was feeling tormented, vulnerable and scared to death.

Now, I want to tell you something weird. I had learned to stay far from fear, to surround myself, and fill myself up w/, LOVE, compassion, kindness, caring, understanding, forgiveness, awe and humble gratitude. I KNEW that all these feelings were healing (versus feeling fearful, angry, remorseful, worried, anxious and such). I remembered it all from '95 to '98, when the cancer spread to my liver. It took me a bit of time and help to get back on track, but I did it! But, when I was the one watching everything got turned upside down, and I lost the lesson.

Paul and I are dog lovers. We rescued 2 4 mnth old Maltese boys. They were so sick and frightened. We nurtured them. Then Chase, the slightly bigger one, got mange. I had heard of such a thing, but had no idea what it entailed. He looked like a burn victim. He lost all the hair on his face, neck and down his chest. It was scarlet red, raw skin, flaming. It was obviously very painful and itched like mad. 2 vets later, we at least had a diagnosis. Dogs get this illness from their mothers. Mites overtake their immune system, and leave them too weak to walk. He wouldn't eat. Stayed far back in the open wicker house we had by our living room and front door. He wouldn't even drink water. I think he just wanted to die. I was so sad for him. Everytime I looked at him I thought, Oh my God. You're going to die. Look at you. You look horrible, you poor thing. And I'd do my best to coax him out and hold him and pet him. He was flagging, obviously. Then, I reached for the book I'd left on my night stand that the rescue lady had given me, with a tag re nutrition. I wasn't interested. But, in my desperation, I opened the book at random to a page 1/4 in. It was the start of a chapter called THE SPIRITUAL REALM. I had goosebumps. This was MY territory. The Cornell vet had practiced conventional med for 10 yrs and had ventured into HOLISTIC vet med. I read the chapter eagerly and quickly. I was doing everything wrong. THEN, after reading, I would look at Chase and think and say aloud YOU ARE BEAUTIFUL. I SEE YOUR SPIRIT AND IT IS GLOWING. I LOVE YOU. AND I'M SENDING OUT POSITIVE ENERGY ON YOUR BEHALF INTO THE UNIVERSE. I am going to stop thinking Oh my God, he could die. I started thinking and saying You are going to be fine. I promise. I'd here for you. And you're going to be all right. JUST LIKE ME! From that moment on, I swear to you, Chase started to walk a little perkier. He took food and water. He played w/his brother, Scamper. And when we went back to the vet, he commented how surprised he was. Why?, my husband asked. Well, when you get a dog that's that sick, you usually don't see them come out of it. (I had purchased to immune boosting vitamins the Cornell vet had mentioned. I had gone to an oncological nutritionist for myself, after all, and take many immune boosting vitamins.) Chase and Scampi are now 4 yrs old. I learned, not only do we have the power to heal OURSELVES, but we can transfer that power to others we love. In fact -- that is what we OWE to those we love. Sending out scary thoughts and vibes is NOT helpful -- to the ones we're worried about OR to ourselves. Negativity corrodes your insides. It is toxic waste, and can actually chemically alter your body and hamper your body's natural ability to stay well and healthy.

I just thought I had to reach out and share this info. It was such a remarkable lesson RE-LEARNED, after I thought I had that one down pat. So think beautiful thoughts of those you love. Release all the scary stuff, because you have to vent, but learn to replace those fears with LOVE. When love fills your heart and your mind, there is no room for fear! HONEST!

With love,
ANDI

[callen03]

I was just recently diagnosed with Stage IV Breast Cancer. I had a bilateral masectomy this January, and I am paricipating in a clincal study (Herceptin, Doxil, & Carbo). My doctor told me the average is 2 years of remission, but I am hoping to be in the higher numbers. That group everyone together regardless of age, health, etc. I am in great shape other than the cancer, and Lord knows I want to live.

I am 49 and raising a 12-year-old grandson who needs me. I also take care of my elderly mom. I am scared too and find it hard to stay positive when all the stats are negative. Let me know if you find some positive stories we can share.

[Marily]

Hi, My oncologist said never look at stats... and as long as there is something else ahead that you can try you just keep going on.
I was dx stage IV, 6 years ago and remain NED.
hugs, and live life to the fullest with love and laughter.
Marily

One of the most valuable things we can do to heal one another is listen to each other's stories. -Rebecca Falls-

[jelevin]

the whole thing is scary and thats an understatement. I am her 2 positive and started a trial at NIH which lasted one treatment when my echo-ejection fraction went down to 149 and they'd only treat me at 155. any one else have that and ever have it go up and when??
next step is navelbein? thoughts
i am stage 4 with liver and bone mets.
thanks, Joan

[chrisy]

Hi Joan,
You might want to try posting your question on the main board, more people will see it there and you should get some good feedback.

Some more information would also help.
What chemo regimens have you already had? There's lots of chemos out there, so knowing what you've done will help people comment.

What is the NIH trial about (what are you getting?).

The echo ejection fraction - do you men Left ventricle ejection fraction (LVEF)? which is measured with either an echo or MUGA scan. Usually this is between 55-70. So if your LVEF dropped from 55 go 49, they would need to address that. Below 50 is generally a signal of cardiac damage but this (when it is a result of Herceptin toxicity) is almost always reversible although you have to stop Herceptin until it rebounds back to the normal range. This can take a few weeks to a few months.

Don't know if this helps at all, but again, try posting on the main Her2group board. Just go to the top and click on "thread starter"

Take care
Chris

[Annlyn]

Hi. Life just gets better and better!
It is now nearly 8 years since my diagosis in 1998. I am ER-PR-her2 +++, had approximately 30 spots on the lungs in 2001 and an erosion at T9. I have been on Herceptin since that time. After 11 weekly doses with taxol weekly there was no clinical evidence of disease so I changed to Herceptin alone, weekly till August 2005 when I transferred to a 3 weekly dose. I have also had Aredia 3 weekly since 2001.
I have never felt better!
Good Luck with your journey
Annlyn

[marymary]

I am starting to feel like something of a success story since my diagnosis in April of 2002. My cancer was quite advanced at diagnosis. I had a huge tumor and mets to skin. Three rounds of A/C, although helpful, did not stop the growth of the skin mets, so an "emergency" mastectomy was called for. The surgeon removed so much skin I avoided standing up straight for months, if not years. A week after surgery, I began Taxotere. Approximately one month later, a FISH was performed and it was finally discovered that I was strongly HER2 positive. I had a year of Herceptin added to the 6 months of Taxotere. I expected to die. The surgeon told my husband that she had seen patients like me last three months or so. I had radiation (lots!). All scans were clear, however. Finally, they were done with me and sent me home (to do what?) and then I really started feeling hysterical.

I was about 43 at this time and the doctor proclaimed that I was in menopause for good. Privately I thought he was wrong. In the spring of '03 I began to feel a little more bright eyed and sure enough, menopause appeared to be just that, a pause. I took a deep breath and had an oopherectomy. I was fighting with every tool at my disposal. Now, I was eligible for Arimidex which I was hearing wonderful things about through the grapevine. My doctor was nonchalant and said I could "do what you want." I wanted Arimidex.

Support groups were my lifesaver. I have made some wonderful, amazing, life long friends there. I began to do some travelling since my days were numbered. Tick, tick, tick went the clock. It was like a bad Peter Pan book.

Last year, in the spring of '05, I was diagnosed with two small brain metastases. Basically, this remains a supposition since they were never able to be biopsied and I had no baseline brain MRI. My oncologist would not give me Herceptin so at that time I changed my care over to Dr. Park at UCSF. I had gamma knife, and have been on weekly Herceptin ever since. I like to be aggressive. I want to make my own decisions. After all, I am the one that must live (or not!) with the consequences.

Last month I received my first vaccine at the University of Washington. I have two more vaccines to go. I am really excited about the work that is being done in Washington.

So, in summary, I was "supposed" to die approximately 4 years ago. This coming April I will be a 5 year survivor. Currently my disease is considered stable. My body is clear. The only brain lesion still visible is most likely necrotic, and continues to wither away.

I am trying to stay ahead of the curve scientifically. Herceptin, Arimidex, Taxotere, oopherectomy, Gamma Knife and now a HER II neu vaccine (who would have thought!) are all tools that I am using to fight. I do expect to die some day, but today is rather inconvenient. I have a trip to Seattle to plan, my Nephew's wedding to attend and a beautiful new copper brown embroidered and beaded dress that clings like a peach to my figure hanging in the closet. I need to find shoes to match and today is Farmer's Market. There is broccoli to be bought.

I am counting on everyone at the wedding whispering to my brother "that's your sick sister? No ****** way!"

Mary

"History will be kind to me or I intend to write it" Winston Churchill

[JerseyGirl]

I can't tell you how happy I am to read about you ladies and the longevity! I'm new to this board, but it's truly given me hope. After my dx in March with Stage IV to liver, I had myself packed away, but now, most of the anxiety is gone and I know I can look forward to years...thanks to posts like the ones from Chris, Annlyn and Mary! You go girls!!!
I don't know why some oncs give us no hope; we just want to be treated like the other stages....
And hang in there Joan; there's many treatements to chose from and one will be right for you!
Julie

[Joe]

Joan,

I too am 4th stage BC('95), 80% Her-2+, mets to liver ('98). Of course this is a very scary place to be BUT I know others who have prevailed. Some, who are on Herceptin, had EF at 45, had to go off for several months and then got back up above 50. Some have undergone Tailor something blood tests and found that though they are HER-2+ they are NOT good candidates for Herceptin and have been put on a different protocol, 4 Adrymicin and 8 of some other combination. If you want I can get specifics. What state are you in? I now live in Fla but began in NY where I am originally from. I have great contacts in both places, plus my all time favorite guru now in Tenn. Stay strong. Stay connected to your spirit, at your core. It has the power to heal you. The body does as the mind instructs. So careful what you think all day. It predicts your fate!

With loving and healing energy,
ANDI

[Cindee]

I have stage 3 her2 positive breast cancer but because the adramycin gave me CHF I cannot have the Herceptin(or so my oncologist says). I finished my chemo 6 treatments of the big three and after a double mastecomy(one breast with two lymph nodes) and hysterectomy, 25 radiation treatments. My oncologist says well we will just monitor you and hope it does not reoccur in two years. Ooops I forgot to say I have the Brca 2 gene. I feel like I am not doing everything I can and need to be more proactive. I have a 7 year old that I need to stick around for. I am not ready to give up and whenever I mention to my oncologist if I need to or can I do anything else I get no answers. I am so lost and I believe the good Lord help me find this website.

Thanks Cindee

[Lani]

that BRCA 1 was associated with EGFR and couldn't remember what BRCA2 was associated with, so I went lookiing for an article. I found the following:

: Mod Pathol. 2005 Oct;18(10):1305-20. Links
The molecular pathology of hereditary breast cancer: genetic testing and therapeutic implications.

Honrado E,
Benitez J,
Palacios J.
Human Genetics Department, Centro Nacional de Investigaciones Oncologicas (CNIO), Madrid, Spain.
Cancer arising in carriers of mutations in the BRCA1 and BRCA2 genes differs from sporadic breast cancer of age-matched controls and from non-BRCA1/2 familial breast carcinomas in its morphological, immunophenotypic and molecular characteristics. Most BRCA1 carcinomas have the basal cell phenotype, a subtype of high-grade, highly proliferating, estrogen receptor- and HER2-negative breast carcinomas, characterized by the expression of basal or myoepithelial markers such as basal keratins, P-cadherin, epidermal growth factor receptor, etc. This phenotype is rarely found in BRCA2 carcinomas, which are of higher grade than sporadic age-matched controls, but tend to be estrogen receptor- and progesterone receptor-positive. The expression of the cell-cycle proteins cyclins A, B1 and E and SKP2 is associated with a BRCA1 phenotype, whereas cyclin D1 and p27 expression is associated with BRCA2 carcinomas. Recent studies have shown that hereditary carcinomas that are not attributable to BRCA1/2 mutations have phenotypic similarities to BRCA2 tumors, but tend to be of lower grade and proliferation index. Somatic mutations in the BRCA genes are rarely found in hereditary tumors; by contrast, BRCA1 and BRCA2 loss of heterozygosity (LOH) is found in almost all BRCA1 and BRCA2 carcinomas, respectively. Furthermore, all types of hereditary breast carcinomas have a low frequency of HER2 expression. Finally, comparative genomic hybridization studies have revealed differences in chromosomal gains and losses between genotypes. The pathological and molecular features of hereditary breast cancer can drive specific treatments and influence the process of mutation screening. In addition, detecting molecular changes such as BRCA1/2 LOH in nonatypical cells obtained by random fine-needle aspiration, ductal lavage or nipple aspirate fluid may help to earlier identify carrier women who are at an even higher risk of developing breast carcinoma.
PMID: 15933754 [PubMed - indexed for MEDLINE]

According to this, your tumor would tend to be ER and/or PR positive. You did not say if yours was. (even a little positive ie, >10% gives you something to aim at with antihormonals)

If yours is not, and as lapatinib is not yet FDA approved for Stage 4s let alone Stage 3s, perhaps you could ask your oncologist about trying a NSAID like naprosyn or clinoril which works both as an antiangiogenic and as an antiaromatase.

Unfortunately expensive testing looking for other markers will probably not get you anywhere as the medications which act as inhibitors for these other markers (VEGFR,etc) aren't yet approved for non-metastatic breast cancer

Back around February or March there was an article/news strory about work by Javier Menendez and Ruth Lupu of Northwestern stating that one could get almost as much down-regulation of her2 signalling utilizing olive oil/flaxseed oil and the like as with herceptin.

Hope some of this helps!

[Cindee]

Lani,

No my tumor is neither ER and/or PR positive. I am interested in the article about work by Javier Menendez and Ruth Lupu of Northwestern stating that one could get almost as much down-regulation of her2 signalling utilizing olive oil/flaxseed oil and the like as with herceptin. Is this story on this website as I am new to this site, but feel like this is the answer that I have been searching for. I need to talk to others like me with the same affliction. Cancer is not cancer is not cancer. I have learned this the hard way. I am ashamed of this but I am so envious of that stage I or II estrogen based breast cancer patient.

Thanks Cindee

[Lani]

Menendez JA, Lilien DL, Nanda A, Polin RS. Related Articles, Links
Use of fluorodeoxyglucose-positron emission tomography for the differentiation of cerebral lesions in patients with acquired immune deficiency syndrome.
Neurosurg Focus. 2000 Feb 15;8(2):e2.
PMID: 16869549 [PubMed - indexed for MEDLINE]
3: Menendez JA, Mehmi I, Lupu R. Related Articles, Links
Trastuzumab in combination with heregulin-activated Her-2 (erbB-2) triggers a receptor-enhanced chemosensitivity effect in the absence of Her-2 overexpression.
J Clin Oncol. 2006 Aug 10;24(23):3735-46. Epub 2006 Jul 17.
PMID: 16847284 [PubMed - indexed for MEDLINE]
4: Lupu R, Menendez JA. Related Articles, Links
Targeting fatty acid synthase in breast and endometrial cancer: An alternative to selective estrogen receptor modulators?
Endocrinology. 2006 Sep;147(9):4056-66. Epub 2006 Jun 29.
PMID: 16809439 [PubMed - in process]
5: Menendez JA, Lupu R. Related Articles, Links
Oncogenic properties of the endogenous fatty acid metabolism: molecular pathology of fatty acid synthase in cancer cells.
Curr Opin Clin Nutr Metab Care. 2006 Jul;9(4):346-57.
PMID: 16778562 [PubMed - in process]
6: Vellon L, Menendez JA, Lupu R. Related Articles, Links
A bidirectional "alpha(v)beta(3) integrin-ERK1/ERK2 MAPK" connection regulates the proliferation of breast cancer cells.
Mol Carcinog. 2006 May 16; [Epub ahead of print]
PMID: 16705745 [PubMed - as supplied by publisher]
7: Colomer R, Menendez JA. Related Articles, Links
Mediterranean diet, olive oil and cancer.
Clin Transl Oncol. 2006 Jan;8(1):15-21. Review.
PMID: 16632435 [PubMed - indexed for MEDLINE]
8: Dominguez A, Menendez JA, Inguanzo M, Pis JJ. Related Articles, Links
Production of bio-fuels by high temperature pyrolysis of sewage sludge using conventional and microwave heating.
Bioresour Technol. 2006 Jul;97(10):1185-93. Epub 2006 Feb 10.
PMID: 16473008 [PubMed - indexed for MEDLINE]
9: Menendez JA, Vellon L, Lupu R. Related Articles, Links
The antiobesity drug Orlistat induces cytotoxic effects, suppresses Her-2/neu (erbB-2) oncogene overexpression, and synergistically interacts with trastuzumab (Herceptin) in chemoresistant ovarian cancer cells.
Int J Gynecol Cancer. 2006 Jan-Feb;16(1):219-21. No abstract available.
PMID: 16445636 [PubMed - indexed for MEDLINE]
10: Menendez JA, Papadimitropoulou A, Vellon L, Lupu R. Related Articles, Links
A genomic explanation connecting "Mediterranean diet", olive oil and cancer: Oleic acid, the main monounsaturated Fatty acid of olive oil, induces formation of inhibitory "PEA3 transcription factor-PEA3 DNA binding site" complexes at the Her-2/neu (erbB-2) oncogene promoter in breast, ovarian and stomach cancer cells.
Eur J Cancer. 2006 Jan 6; [Epub ahead of print]
PMID: 16406575 [PubMed - as supplied by publisher]
11: Mangano FT, Menendez JA, Habrock T, Narayan P, Leonard JR, Park TS, Smyth MD. Related Articles, Links
Early programmable valve malfunctions in pediatric hydrocephalus.
J Neurosurg. 2005 Dec;103(6 Suppl):501-7.
PMID: 16383248 [PubMed - indexed for MEDLINE]
12: Menendez JA, Vellon L, Colomer R, Lupu R. Related Articles, Links
Effect of gamma-linolenic acid on the transcriptional activity of the Her-2/neu (erbB-2) oncogene.
J Natl Cancer Inst. 2005 Nov 2;97(21):1611-5.
PMID: 16264182 [PubMed - indexed for MEDLINE]
13: Menendez JA, Lupu R, Colomer R. Related Articles, Links
Targeting fatty acid synthase: potential for therapeutic intervention in her-2/neu-overexpressing breast cancer.
Drug News Perspect. 2005 Jul-Aug;18(6):375-85. Review.
PMID: 16247515 [PubMed - indexed for MEDLINE]
14: Aiyagari V, Menendez JA, Diringer MN. Related Articles, Links
Treatment of severe coagulopathy after gunshot injury to the head using recombinant activated factor VII.
J Crit Care. 2005 Jun;20(2):176-9.
PMID: 16139160 [PubMed - indexed for MEDLINE]
15: Menendez JA, Lupu R, Colomer R. Related Articles, Links
Exogenous supplementation with omega-3 polyunsaturated fatty acid docosahexaenoic acid (DHA; 22:6n-3) synergistically enhances taxane cytotoxicity and downregulates Her-2/neu (c-erbB-2) oncogene expression in human breast cancer cells.
Eur J Cancer Prev. 2005 Jun;14(3):263-70.
PMID: 15901996 [PubMed - indexed for MEDLINE]
16: Menendez JA, Oza BP, Colomer R, Lupu R. Related Articles, Links
The estrogenic activity of synthetic progestins used in oral contraceptives enhances fatty acid synthase-dependent breast cancer cell proliferation and survival.
Int J Oncol. 2005 Jun;26(6):1507-15.
PMID: 15870863 [PubMed - indexed for MEDLINE]
17: Menendez JA, Vellon L, Lupu R. Related Articles, Links
Antitumoral actions of the anti-obesity drug orlistat (XenicalTM) in breast cancer cells: blockade of cell cycle progression, promotion of apoptotic cell death and PEA3-mediated transcriptional repression of Her2/neu (erbB-2) oncogene.
Ann Oncol. 2005 Aug;16(8):1253-67. Epub 2005 May 3.
PMID: 15870086 [PubMed - indexed for MEDLINE]
18: Vellon L, Menendez JA, Lupu R. Related Articles, Links
AlphaVbeta3 integrin regulates heregulin (HRG)-induced cell proliferation and survival in breast cancer.
Oncogene. 2005 May 26;24(23):3759-73.
PMID: 15782133 [PubMed - indexed for MEDLINE]
19: Menendez JA, Vellon L, Lupu R. Related Articles, Links
Targeting fatty acid synthase-driven lipid rafts: a novel strategy to overcome trastuzumab resistance in breast cancer cells.
Med Hypotheses. 2005;64(5):997-1001.
PMID: 15780499 [PubMed - indexed for MEDLINE]
20: Menendez JA, Vellon L, Lupu R. Related Articles, Links
Orlistat: from antiobesity drug to anticancer agent in Her-2/neu (erbB-2)-overexpressing gastrointestinal tumors?
Exp Biol Med (Maywood). 2005 Mar;230(3):151-4. No abstract available.
PMID: 15734718 [PubMed - indexed for MEDLINE]

I thinks quite a few of these are open access, otherwise see if a librarian can help you access some.

I will try to find the news release I referred to earlier and post references to some of his pre2005 articles. Unfortunately the synergistic effect of herceptin and orlistat (weightloss drug) doesn't seem to work in humans as we DO NOT absorb the drug (that's how it works in weightloss--it drags dietary fat with it when it gets excreted as it is not absorbed)

[Lani]

News - Plant oil 'acts like cancer drug'
Inexpensive therapy hopeThe latest work by Dr Javier Menendez and colleagues at Northwestern University suggests evening primrose oil might be a cheaper alternative, or add extra protection.
2 Nov 2005

News - Olive oil acid 'cuts cancer risk'
Caution urgedDr Menendez said it might be possible to delay or prevent herceptin resistance in breast cancer patients carrying high levels of the rogue gene by including olive oil in their diet.
10 Jan 2005

Do the same and read the first article!

[Lani]

Oil May Fight a Cancer-Causing Gene

Miranda Hitti



Nov. 1, 2005 -- Could oil from tiny seeds help bring a big, bad cancer gene to its knees?

Maybe, but it's going to take a lot more work to find out, according to a new study in The Journal of the National Cancer Institute.

Keep that in mind before you delve into the details of the study, which involved cancer cells, not people or animals.

The scientists included Javier Menendez, PhD, and Ruth Lupu, PhD.

Menendez is a research assistant professor of medicine at Northwestern University's Feinberg School of Medicine. Lupu is a professor of medicine at Northwestern University and a researcher at Northwestern's Robert H. Lurie Comprehensive Cancer Center.

In One Corner: A Cancer Gene

The study focuses on the Her-2/neu cancer gene. It's involved in some (but not all) cancers, including more than a fifth of breast cancers.

The gene has been linked to particularly aggressive breast tumors, and cancer patients with this gene often have a poor prognosis, Lupu says in a news release.

The gene orders the overproduction of a protein called the Her-2/neu protein. Some cancer cells grow when exposed to Her-2/neu protein.

In the Other Corner: A Seed Oil

The researchers tested gamma-linolenic acid against cancer cells with the Her-2/neu gene.

Gamma-linolenic acid, or "GLA," is found in oil from the seeds of evening primrose, borage, and black currant. Some studies have suggested that GLA might target cancer cells without affecting healthy cells, write the scientists.

Round One: GLA vs. the Gene

The researchers studied human breast cancer cells with the Her-2/neu gene. They exposed some of those cells to GLA for 48 hours. For comparison, they left other cancer cells alone.

Afterward, they checked the surfaces of the cells for the Her-2/neu protein.

The GLA-exposed cancer cells showed "substantially" less of that protein than the cancer cells that hadn't been exposed to GLA, the researchers write.

Round Two: The Rematch

Next, the researchers exposed more breast cancer cells to various doses of GLA for 48 hours. Then, they poked around in part of those cells' genetic material.

The higher the GLA dose, the higher the odds that those cells didn't copy the Her-2/neu gene. GLA may have been a stumbling block in the copying of that cancer gene.

Round Three: Tag-Team With Cancer Drug

GLA has been shown to make cells more sensitive to the effects of some cancer drugs, write the researchers.

So they teamed GLA with the breast cancer drug Herceptin in some lab tests. Herceptin targets breast cancer cells that grow when exposed to the Her-2/neu protein.

The combination made breast cancer cells 30 to 40 times more sensitive to Herceptin. That was a significant difference, write the researchers.

GLA and Herceptin work differently on Her-2/neu, says Menendez in a news release.

Not a Knockout

The researchers call for more studies of GLA and cancers with the Her-2/neu gene. But they caution that extensive preliminary studies are necessary before GLA can be tested in clinical trials.

In January, the same team of researchers reported in the Annals of Oncology that a fatty acid found in olive oil may also counter the Her-2/neu gene. That study, too, was based on lab tests of breast cancer cells.

SOURCES: Menendez, J. Journal of the National Cancer Institute, Nov. 2, 2005; vol 97: pp 1611-1615. WebMD Medical Reference from Healthwise: "Herceptin." News release, Northwestern University.

Reviewed by Louise Chang

[tousled1]

Cindee,

I am Stage III, HER2+++, ER/PR-, and out of 26 lymph nodes 14 were cancer. Do not despair because you can't receive Herceptin. They are constantly doing research and new drugs are becoming available all the time. Breast cancer is a dreadful disease and all the women on this board are fighting this disease. There is a lot of support here and a wealth of information.

[Joe]

Dear Cindee,

I am right here by your side. I will not give up on you, but you must promise to do the same! Your 7 yr old does indeed need you. Focus not on the fear, which is a daunting challenge I know, but rather on your wellness. WHAT YOU THINK ALL DAY PREDICTS YOUR FUTURE. So stay far from all forms of negativity (experiencing the necessary what ifs and horror scenarios) and moving as quickly as possible to serenity and the solid KNOWING that you were meant to remain here on Earth, happy, giving, caring, loving and grateful. Your child is a huge part of your mission here. Focus on the joy you derive from that relationship, not on the fearsome possibilities. DO NOT GIVE POWER AWAY TO SUCH NEGATIVE THINKING. You can control your thoughts. They are full of energy. Try to peacefully go to your center, in silence, breathing deeply, and connect with your Inner Self. That is your Soul, your Spirit. It is full of eons of wisdom, it is sacred energy, it puts you in touch with the power of the Universe, which is inifinite, beyond our comprehension. Be awes by the beauty that surrounds us all. And by your PERSONAL EMPOWERMENT, granted you as you were born into this world. Most of us do not know we are so strong and courageous. But how perceptive we become, how keen our hearing and understanding -- once we have been forced to find our Soul! Please stay in touch with me.

Has it been suggested that you go for every 3 or 4 month CT scans (of the chest/abdomen and pelvis -- with and without contrast)? This is enormously reassuring to me, a firm confirmation that I am STABLE. It's like renewing my contract with Life each time. I go to a oncological nutritionist, which in and of itself is a rarity and a find, in Manhattan. I take many immune boosting vitamins that keep my heart and bones strong as well, and fight free radicals.

You have the power to heal yourself (with the help of modern medicine and the right docs). I have 5 oncs. Each is brilliant and each is highly regarded by the professionals as well as me. They each treat me with respect, dignity and positivity. And they each have something different to add to the mix, to help me proceed.

WHAT DOES "CHF" MEAN?

You are not lost. You are having doubts and that is natural. But you can concentrate to aligning yourself w/your Spirit which is the True You and the source of great strength and courage, if you allow it to be.

I also do take 2 meds that help relax my mind and lift my spirits. I am an extremely positive person, despite 4th stage BC (in '95) and a metastasis in '98 to the liver. I am a warrior. And you too can determine to be one as well.

With loving and healing energy being sent your way,
ANDI

[sophie]

i have read some really good information on this site ! so thank you all , but i did read on vaccine ! could someone tell me what this is please !!! i have secondary bone cancer in the spine currently on herceptin and seems to contain it at present lets hope it stays like that! my onc said i have 2 to 10 years , so this gives a big gap who knows what end i will be at.
sophie

[Andrea Barnett Budin]

Do any of you check out the HERCEPTIN site below? Has great info also.
http://her2support.org/vbulletin/showthread.php?t=18762&goto=newpost

We all know we all have to stay as well informed as possible. Doing it through one another is a double bonus. Sharing feelings and experiences, boosting our inner strength and courage. So inspiring. So enriching. SO EMPOWERING!

Always with love,
ANDK

[sophie]

i was also told 2 years , but up to 10 if controled, i found this hard now DECIDED after a few months to start a tick list of all the things i want to do with my best friends (my 2 children, mum and dad, and my big sis and my friends) i am now just starting , i am off to Mexico on Tuedays !
thats number 2 , number 1 was to spend this christmas all together, and yes the list goes on. i have also took time doing memeory boxes for my two children, getting their birthday cards and wedding cards , engagement, first child and the list goes on. so i found this special because we are lucky in one way we can get things ready and prepare things. sorry for going on keep positive.
sophie

[Marily]

Cindee, I want to share a bit of what has happened to me. My left ventricular function went down to 21. I have a fantastic Cardiologist who with medication and careful watching has me back on Herceptin. Add a cardiologist to your Doctors. Also don't just accept one Dr's opinion, you must be strong and proactive. When you find information that you feel may be a benefit to you, ask questions! If you don't get answers (ones that make sense to you ) find someone who will give you a better explanation why you may or may not fit that treatment and than decide. My cancer was very aggressive and 2 months after I was diagnosed, I had gone from a small lump to stage IV breast cancer, highly er/pr positive and highly her2pos...+++ My tumor was 7.5 cm and the skin of my breast was firm, red and warm. I had lymph node involvement, a tumor in my liver, and Mets to lung and bone. Luckily, My new Dr was on the cutting edge of breast cancer care since we did not have much to go on. We have forged a path and continue to do so today. As I look back now, many of the things she did are what now is considered the treatment of choice! I was never told what I read or researched was not going to work. She would listen and say lets try it and see if you believe it will work. We found some very good things that helped that way and also a few that did not. I have had a mastectomy , a failed tram, due to infection, but had a great plastic surgeon who closed up my chest wall very nicely, and finally at 55 had my ovaries removed since they were still fully functional, so I could go on Aromasin, and off Tamoxaphin. My family has longevity on it's side and so we found my age can not be considered in a lot of decisions (my family is young for their age lol. I have two who lived to be over 100 and many in their late 90's) therefore I had to break a lot of misconceptions. There are no comparisons with cancer! My heart went down to a 21 ejection fx AFTER three and 1/2 years of Herceptin. It also came back to above 60 with rest and my cardiologist's knowledge of medications. I went back on Herceptin. I have developed an allergy to Herceptin now after 6 years but with the help of a very learned Oncologist's suggestions, I am still able to take it, and await Lapatinib. At present I am 6 years NED. Today I had genetic counseling due to the fact I might have the BRACA 2 gene, after someone doing a study looked into my family history. Volunteer for studies if you are able..... I continue to research, my Dr's watch carefully with Pet/Ct and Mugga and now with Elysa/Bayer test for her2 elevation, and we continue to remain aggressive and proactive. Be positive, laugh and learn all you can and strongly advocate for yourself. Also do it now, don't wait for later. It helps to do things you want to do and live your life to the fullest. That positive thinking and the fun you have doing things with family and friends helps you to be strong and healthier.
Hugs from Marily
(6 years living life with love, laughter and going strong.)

[Brenda_D]

I've purposefuly not asked for a "time estimate", because I don't want statistics to mentaly suggest to me that I only have X amount of life left to live, when that may or may not be what will really happen.

[Marily]

I had a friend who was given 1 month... she got angry and told the Doctor ... you do not know this, the only one who knows this is God... She lived another year and it was a good one.

[fullofbeans]

Just finding out about being stage 4 is distorting, I certainly did not take it well, I was also told that I had a few years to live, at first I beleive what they said but then I realised I am not a stat. I agree with all postings regarding how important it is to be agressive, informed and I would add beleive that it can be done. I particularly agree with the posting saying that you should focus on wellness and not your fear.

I was diagnosed with 6 tumours in August 06 and I am now a NED. It was my goal, I made it a mission, I knew I wanted the tumours out. I told my oncologist that I wanted to be cured and that it should be their goal to.

There is a small chance that mets never recur (something like 3% have a 15 years followed up survival) and with new drugs such as taxotere/herc this is increasing. I beleive and know that I am in that percentage and so should you. I am doing everything to try to increase it (healthy food, supplements) so my bodies knows thru these rituals that I am on his side and that it is loved, it might sound weird.

Lots of love
Karina