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Old 12-07-2004, 10:17 PM   #1
mamacze
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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)
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Old 12-08-2004, 12:18 PM   #2
Kim in CA
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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.
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Old 12-08-2004, 03:17 PM   #3
mamacze
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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
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Old 12-08-2004, 08:50 PM   #4
mamacze
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Just wanting to move this back to the top. Please, herceptin users, where do you stand relative to your prognosis?
Kim (in CT)
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Old 12-10-2004, 11:39 PM   #5
michele u
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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.
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Old 12-11-2004, 08:12 AM   #6
mamacze
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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)
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Old 12-14-2004, 03:37 PM   #7
Brian
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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
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Old 12-14-2004, 07:05 PM   #8
mamacze
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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)
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Old 01-29-2005, 09:43 PM   #9
*_Annemarie_*
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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.
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Old 02-03-2005, 10:55 PM   #10
Lolly
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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
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Old 02-04-2005, 06:52 AM   #11
mamacze
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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
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Old 02-04-2005, 10:04 AM   #12
Lolly
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Kim, I'll be keeping MY fingers and toes crossed for you also!

Love, Lolly
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Old 03-11-2005, 06:03 PM   #13
Phylicia
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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
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Old 03-12-2005, 11:08 AM   #14
*_joy_*
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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
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Old 03-12-2005, 09:35 PM   #15
al from canada
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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
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Old 03-13-2005, 08:59 AM   #16
mamacze
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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)
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Old 03-13-2005, 09:51 AM   #17
Think Pink
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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
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Old 03-13-2005, 09:24 PM   #18
al from canada
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Dear Martha,
12 months ago my wife was told she had 2 weeks to live. Go figure!
Al
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Old 08-15-2005, 10:38 PM   #19
*_kath_*
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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.
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Old 08-20-2005, 10:08 PM   #20
Gina
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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
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