Topic: Can we start a thread of positive stories?

Aug 4, 2012 07:49 PM, edited Aug 5, 2012 06:02 PM by Karen2012

Thanks Ann, I just thought it would be nice to have a topic to go to for newcomers that are trying to deal with a new diagnosis, or even us, when we have bad days. Wow, I'd love to hear from the lady who has had organ mets for 20 years!

Aug 5, 2012 07:53 AM Lauriesh wrote:

This had recently been posted on the Her2 support board, so I thought I would repost it here for those who may not have seen it.

For those of us that are Her2+, it is very encouraging.

 From Annals of Oncology Ann Oncol. 2012 Jul 5. [Epub ahead of print]


Durable complete response following chemotherapy and trastuzumab for metastatic HER2-positive breast cancer
G. Gullo1,*, M. Zuradelli2, F. Sclafani1, A. Santoro2 and J. Crown1
+ Author Affiliations

1Department of Oncology, St Vincent's University Hospital, Dublin, Ireland;
2Oncology and Haematology Unit, Humanitas Cancer Center, Rozzano, Italy
↵*(E-mail: g.gullo@svuh.ie)


Individual cases of prolonged complete response (CR) of HER2-positive metastatic breast cancer (MBC) have been reported following treatment with trastuzumab/chemotherapy, but the frequency of durable remission is unknown [1, 2].

We carried out a retrospective study of long-term outcome of all patients with HER2-positive MBC treated in our institutions with chemotherapy and trastuzumab before March 2007. All patients had histology-proven, HER2-positive (3+ on immunohistochemistry and/or HER2/neu gene amplification on FISH) breast cancer. None had received adjuvant trastuzumab.

Eighty-four patients were treated from May 2000 to March 2007 (Table 1). Thirteen (15%) achieved CR as defined according to RECIST 1.0 criteria [3]. As part of different institutional practices, patients in Dublin continued on trastuzumab until progression or at least for five years. In Milan trastuzumab was generally stopped in CR patients within two years of achieving remission. As of March 17, 2012, (median follow up 7 years, range 2.5-11.8 years), six of these patients remain alive and continuously cancer free at 142, 139, 122, 101, 84, and 84 months. Two additional patients are alive and continuously free of metastatic cancer at 107 and 105 months, having received curative locoregional therapy for new primary breast cancers. Five patients who achieved CR have developed relapsed MBC, at 44, 37, 35, 30, and 15 months, two while receiving maintenance trastuzumab (at 44 and 37 months, respectively). Three others had discontinued trastuzumab (21, 8, and 4 months after cessation).

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Table 1.
Characteristics of patients

All of the eight DCR patients received trastuzumab together with their first chemotherapy for metastatic disease. Five (63%) DCR patients had estrogen receptor (ER) negative disease, and five had metastases limited to liver. All but one received a taxane-containing regimen with trastuzumab (docetaxel and carboplatin-4 and single agent taxane-3).

The median duration of trastuzumab for CR patients in the two institutions was 67 months (range: 49 to 107+) in Dublin and 14 months (range 5-26) in Milan. Interestingly, although the frequency of CR was very similar in the two institutions (Milan 16% and Dublin 15%), the proportion of patients with DCR was higher in Dublin than Milan (11% versus 6%, respectively), prompting speculation that the duration of trastuzumab therapy might be important.

This is the first reported series of long-term follow-up of patients with HER2-positive MBC who achieved CR following chemotherapy and trastuzumab. Our data suggest that a meaningful minority of patients achieve very prolonged complete remissions. Although the small numbers and the retrospective nature of the study preclude definitive statistics, the data also suggest that the impact of trastuzumab might be greater in patients with ER-negative disease (14% DCR-an observation consistent with trials conducted in earlier stage disease [4, 5]) and possibly in those with metastases confined to the liver. Furthermore, the complete absence of DCR among patients who received trastuzumab with their second or subsequent chemotherapy for metastatic disease suggests that this agent should be a component of initial treatment. For patients with ER-negative disease who received trastuzumab with first line chemotherapy, the DCR rate is 16%.

At present we are conducting a comprehensive molecular and cytogenetic study of these patients' tumor samples to identify a subset of patients with HER2-positive MBC who are more likely to achieve DCR following chemotherapy plus trastuzumab.

We hypothesize that overtly HER2-positive MBC may be a potentially curable disease.

Laurie

Aug 5, 2012 03:02 PM EnglishMajor wrote:

 Coming up on three years for me. Here are stories from the MBCN web site: 

mbcn.org/get-involved/category...

Aug 5, 2012 05:56 PM kingcour wrote:

So inspiring to read this JeninMichigan! Can I ask how you have changed your diet or of you do any holistic routines in addition to your current meds? So excited to read this! God bless you! Praying for continued NED!!!!

Aug 7, 2012 08:14 PM camillegal wrote:

Good, goood, GREAT Jen/

Aug 18, 2012 04:22 PM, edited Aug 18, 2012 04:24 PM by pattih

HI! I was diagnosed Stage 1 at age 33 December of 2003. I had a 4 year old and a six month old. I had suspected BC since that April but was pregnant and of course not taken seriously. Fast forward 4 years and I was Stage IV with a tumor in my supraclavical. I have been in treatment since then. It has reappeared in the same spot 2 twice and my liver 3 times. I have had a shit ton of surgeries and chemo and hormonals and radiation. I piss excellent pharmaceuticals.

I'm still here! I will be 5 years stage IV in September. So 9+ years of BC. I never thought I would make it this far. I am so blessed to have my  13 year old and 9 year old. They have only known me as a mom who has cancer but I am still able to be mom. My husband has been great and has handled this horror with so much courage and positivity. He is my rock. We joke that we knew we had a great marraige  and that we didn't need this "test." You would never know looking at me how close to death I have been several times, as recently as last month.

I work two part time jobs and I love to walk and cycle. I also love to organize stuff. I think that is a fall out from being stage IV. I think i need to have everything accessible in case I go suddenly. Of course, I can never find my keys or my phone.

Middle finger to the statistics.

Aug 18, 2012 06:39 PM camillegal wrote:

Aug 18, 2012 07:05 PM camillegal wrote:

Eng.Maj.---that's a wonderful announcement to get to make. Wow she was young.

Heres to all of us.

Aug 18, 2012 08:11 PM K-Lo wrote:

Really good to hear. My survival expectancy runs out Sept 1. But we have a lot of travel plans, so i'm afraid i cant oblige.
I have the greatest Rads Onc who encourages me to keep pushing for testing and treatment instead of waiting for the worst.
Thanks y'all for good news.

Sep 24, 2012 08:02 AM, edited Sep 24, 2012 08:04 AM by nicole0714

Love this topic thread. Will keep coming here. We hear so many horrible stories, you forget that many women are doing great with NED. Many. All of these posts just put a huge smile on my face and energy for the day. I was diagnosed stage 1 at 37 in 2009 with four young sons. Came back this summer to my liver, cervical , chest, and mediastinal lymph nodes. Chemo is going after it as the diffuse liver mets (and a heavy burden of disease per my onc), are no longer metabolically active per my onc. Awesome. Praying like crazy too, and fully believing I'll be here to raise my boys and be a grandma rocking their children! This cancer has given me perspective!
Hope to start working out soon, as I was a big "cross fitter" before this recurrence. Anybody change their diet? That part is very confusing to me...