Hi, I don't post alot, just once in awhile. However, yesterday I had a doctor's appointment and my doctor and I were discussing my case. She told me last year that I am considered NED (no evidence of disease). I was diagnosed with Stage IV metastatic disease in April '99. It will be 5 years since that diagnosis this coming April. I have been on Herception for almost 4 of those years. I am also taking Femara for the same amount of time. She told me that they are seeing more and more women like me and are starting to wonder if Herceptin is actually a cure for women who overexpress the HER-2Neu gene. I am just curious to know if anyone else has heard of this or if there are any studies going on the assess this. Metastatic Stage IV BC has never been cured, but she said it is almost unheard of for someone with this disease to go so long without any progression of disease. Is there anyone else here experiencing the same thing? Thank you

I don't really have anything to contribute, but just wanted to say that it's certainly uplifting to hear remarks like that! I'm so pleased for you and hope the rest of us get to experience something like you have.

Pattie,
Most oncologists agree that there is no "cure" for breast cancer, but if you go to our home page and click "index" then go to "stories". We have several stories of long term survivors.

The closest we have to a cure is Barbara Bradfield who was diagnosed as Stage IV in 1993.
Dr. Slammon persuaded her to participate in the phase I clinical trials for Herceptin. After the trials were over, she was found to be in complete remission and has taken no chemo in 9 1/2 years.

I met with some Genentech representatives last week at the San Antonio Breast Cancer Symposium and they are planning to do a survey on just about everyone who has taken Herceptin. They hope to get some long term survival figures. I will have more details when they are available from Genentech. I hope that you will participate.

I am a 4 1/2 year stage IV survivor, still NED and we have several others who frequent this board.

Hugs and congratulations
Christine

I have been on Herceptin and NED for over five years, since October 1998.

Hi,
I've been NED while on Herceptin since August 2001, and hope to remain that way for a long time. The survey will be interesting!
Lolly

NED since 2000
 

Hi I am 6 year survivor, stage IV I am also Ned and on Herceptin just about 5 years. My Oncologist said I am her only one that has done this. It is really great to hear we are a growing group! Are you all continuing the Herceptin? I am very interested on this long term follow up. I talked to Dr Jim Lasker at Miraval and He encouraged me to see if any of the research Hospitals were doing any long term follow up, and if not to get someone interested. I called many places and Genenteck but no one was looking at long term effects .. I am very excited and will follow this thread with great interest. Hugs Marily

I have discussed long term survival with several leading researchers while in San Antonio. They are willing to do a study if we could come up with a lsit of about 10 survivors 5+ years who have access to their original tumor samples.

Regards
Joe

Like another person said here...I don't know the answer to your question...but I must say it is a wonderful post to read. Very encouraging since I am so new to all this. I am a stage III A with a highly aggressive cancer doing the herceptin...so when I read posts like yours...it gives me real hope. Thanks for posting. :)

God Bless you...

Chelee

Joe - "sticky" your message...
 

... so that it will not get lost on the general board, please.
I recall that conversation and a couple of "heavy hitter" researchers were the ones asking for such a list.
Those women five or more years out ARE still few and far between, but I am confident can be gathered for such an important survey.

Unfortunately, I am not quite 4 years off chemo at this point, so I guess depending on how the list forms, there may be another break point the researchers might be interested in. I do have access to my original tumor blocks.

Let's not lose this topic! The information gleaned from long term survival on Herceptin could save lives in the future.

jeff
 

http://www.jco.org/cgi/content/full/20/3/620

Check this out--this guy writes interesting stuff about the possibility that some women with metastatic bc are getting cured...

Best to all,
Jeff

Biopsy for researchers to look into Herceptin "Cure"
 

Joe, I leave tomorrow very early for California but when I arrive I will call my Oncologist and see if I can get those slides.. or whatever I need. I am very eager to find out more about this.. Thank you so much for your interest Marily

It seems to me there is an even more important place for the her 2 serum testing in the long term survivor scenario.

jackie

Thanks, Jeff
 

Great article
I would like to start another thread inquiring of those Long-Lived Stage IVs what their hormone receptor status is and, if ER positive, how long they have been/were on antihormonal therapy, and what kind

I have heard bantered around that the ER receptor pathway may be the origin of the resistance that develops to Herceptin treatment.

If this is so, would the cancer be expected to return when antihormonals are stopped--which, I suppose, they never do...

So much to learn.

So much to know.

So little certainty - I wonder what they will make of todays treatments in 100 years.

A cure? Isn't life an ongoing remission from a greater bodily failure - no cure there I have heard of.

Ongoing remission and good health to all.

RB

This really is an interesting thread; I'm updating my earlier (2003!) post to bring this back to the top, and to say that I've recurred 2 more times since this thread was started, but only to the same lymph nodes as the ones I recurred to in 2001, so I'm very intrigued by Jeff's link as I now believe some of us are going to be living a very long time with manageable disease, even though we can't consider ourselves "cured" of metastatic disease. Another study possibility?!

<3 Lolly

P.S. to Anne;
I'm ER/PR-, from first diagnosis in '99, and had biopsy re-tested both for HER2 and hormone with this recurrence, still HER2+, ER/PR-...

Ladies,

Of your long time survival: BRAVO! I was curious to see how many of you were ER+. Does it increase your chance of being "cured" if you can have antihormanal tx along w. Herceptin? Curious what the experience on the board is?

hi all,

Well for once, I do not qualified for the long term study! But I have been on herception for over 4 years 2 months and have had no progression on my bone mets. So if you do need another body and let us "younger" ones participate, let me know.

Dee

Lani, Just found your questions. I am very Er +++Pr +++ and Her2+++DX r breast,had 13 lymph removed, metz to liver, lung,bone. Did rounds of A/C taxol/Herceptin. On tamox for 3 years had to fight to get off it, since it is felt that Herceptin people should not be on tamox for more than 2-3 years. But you have also to be post menapausal which I was not, and had to fight to prove first I was not post menapausal, did the lupron, etc. ovaries came back to work after the big chemo? than to fight to have my ovaries out to go on to Aromasin.. I was 55 and they were perfectly functioning, so now plan to stay on Aromasin until ? what ever new comes up I guess. Really was interested to hear that Er+ with Her 2pos was an unusual thing? I am looking for more information on that... anyone else hear this?
Marily

Hello again,

I have nothing to contribute on the subject because I started this stage IV only 9 months ago. Was first dx. Ã* januar 2002. Before I found this website I searched for infos and found this sentence but have forgotten where. I keep in my computer and read it now and then. Thinking about to enlarge it and print it.

,,The goal of treatment for stage IV cancer is to prolong survival and maintain the quality of life. Women with stage IV disease are often told that, although long-term management of their cancer is possible, there is no cure. Yet more and more people with stage IV cancer are defying the odds of cancer survival.“
best to all


Jóhanna

I was diagnosed this year. I didn't realize how lucky I was to be getting Herceptin until I found this website.

Like the above post, my oncologist told me that the "average" person with Stage IV can look forward to two years of remission. I am optimistic that I will not be "average" and will benefit from newer and better medicines. I am taking part in a clinical trial (doxil, carbo, & herceptin) for Stage IV BC.

I hope to increase the stats, along with those of you who also receive Herceptin.

Wish me luck!!!!