Herceptin Use and Prognosis for Stage IV

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)

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.

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

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.

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)

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

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)

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

[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

[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

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

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