Her2++ No Mets

[Unregistered]

Has anyone be dx, with her2 and not got mets?

Just wondering?

Randi

[CLTann]

I am sure there are hundreds of stage 1 HER2 positive women who have no mets. The non recurrence rate is quite high for these women, regardless of the HER2 status. I am one of them.


Ann

[RhondaH]

I was dx w/ Stage 1, no nodes, ER/PR-, Her2+ on 2/1/05. Had a partial mastectomy on 2/7/05, finished 6 rounds of dose dense TEC 5/18/05 and 33 rads 8/1/05. Began 1 yr of every 3 weeks Herceptin 8/18/05 and will have my last one 8/10/06. I don't have mets.

Rhonda

[lia]

I 'm sure there are many stage 3 her2 +++ women who haven't developed secondaries . I was diagnosed 28 / 1 / 05 and although I know it's very early days, so far so good. I 'm lucky to be getting herceptin( in the uk) and combined with zoladex and arimidex and various supplements I feel fine, all things considered ! This site, along with the bcc site in the uk, has been my virtual rock in the 10 months since I managed to find out my her 2 status. Without them I doubt whether I would have managed to get herceptin as close to my chemo finishing as I did,or whether I would have even found out about her2 so early on. Thankyou to everyone on here ,and to anyone from the bcc site who is reading this !!

[Michelle]

I was diagnosed stage 1c, er+/pr+ on 4/26/05. I do not have mets at this time. I wonder the same thing being her2+++, are we destined to end up with mets? I believe herceptin is giving many of us much longer times between reoccurance.
Michelle

[MarianneWA]

Hi - I was diagnosed 4/2002, age 47 (lumpectomy, ACx4, Taxolx4), 37 rads. Grade 3, er/pr-ve, her2+++, 1+ve node. I chose not to take herceptin; participated in a vaccine trial @ UW in 2004; so far, so good! I, too, think there are many her+ with no mets, many years out.

Marianne

[chartermom02]

I was diagnosed at age 41 with Stage 1 IDC in October 2000. 2 cm ER+/PR+. Her2+++. Lumpectomy, A/C x4, and 35 rads. Tamoxifen for 3 years 10 months; now on Arimidex since November 2004 after my hysterectomy/oophorectomy. No Taxol back then, that was only for patients with positive nodes; and no Herceptin back then for Stage 1 - I say "back then" like it was 20 years ago but protocols change so rapidly. So far NED!!

Gloria

[Maggie]

Randi, I'm HER2 +++ ER/PR negative, stage 1, no nodes, no mets, on herceptin every 3 weeks.

Maggie

[Maggie]

Lia, would you share the BBC site with us! We go to the UK, often and I get BBC news via email every day. I would be interested in reading it. I see they are starting to give herceptin over there now, too. The women are demanding it and I don't blame them. Where in the UK are you?

Maggie

[Montana]

Randi, I am Stage 1 no nodes, Her2+++ diagnosed 10/04. I'm taking Arimidex, and am NED according to recent scan.

[DeborahNC]

Randi,

I am Stage 1 IDC & DCIS, dx. 9/05, Her+++, Grade 2, node neg., no mets, 3 rnds. Taxol, but will be on Herceptin 1 year.

I progressed from Stage 0, comedo DCIS, lumpectomy, 33 rads. in 9/03; exactly within the 2 year recur window.

I do worry that I will progress due to my Her+++ status.

[Unregistered]

Thanks for replying. I was dxed on 4/05, stage ii, er and pr + as well as her2+. I did a lumpectomy, clean margins, snb, no lymph nodes involved. 4 a/c, 12 taxol/herceptin. in rads now 18 left of 33, and herceptin every 3 weeks for 40 weeks. I will have my first set of scans in May to see if I'm NED. I was just wondering how everyone else was doing.

Thanks,
Randi

[Cathya]

I was diagnosed 3 cm tumor, node negative, 1 cm tumor in supraclavicular node, ER/PR+, Her2 borderline in October 2004. Lumpectomy, 4 AC, 4 Taxol, radiation and on herceptin indefinitely, arimidex for 5 years. Recent scans all clear.

Cathya

[Tessa]

I was diagnosed in July 2002, stage IIa, 10 of 16 lymph nodes were affected. The tumor itself was minute the first thing I noticed was the lump under my arm. I had a lumpectomy, three rounds of epirubicin and taxotere, radiation, and then three more rounds of epirubicin and taxotere. Three weeks after finishing chemo I fought my way into the HERA study (the hospital had failed to let me know it existed, I learned about it by chance from a fellow radiee), and was randomized into the one-year arm. I got Herceptin every three weeks until January 2004 and have - to my eternal gratitude - been NED ever since.

Of course, as I know in every fiber of my being, there are no guarantees about anything, let alone recurrence/metastases - but yes, it is possible to be HER2 and no have metastases as least for a while - which means (once the initial panic and fear have subsided - say after a year?) some very good years, whatever may lie ahead.

[jener8er]

No mets for me either yet, and hope to keep it that way! Dx Oct 04, Stage 3a, 4/20+ nodes, ER/PR-, Her2+++. Had 3 A/C, 4 Tax. + Herceptin, 33 rads, just starting my 2nd year of Herceptin and will stay on it as long as they let me! Hoping to NEVER have to deal with mets...
Jen

[AlaskaAngel]

randi,

It is a very different thing to give an opinion about the likelihood of mets if you are a person who is HER2 positive and has been handed the benefit of traztuzumab versus if you are a person who is HER2 positive and has been prevented from having the benefit of traztuzumab.

I am curious as to why those who are getting the benefit of traztuzumab haven't responded to the string titled One Last Request, to try to help the HER2 positives who haven't been able to get traztuzumab? Would any of you be willing to check with your oncs to see what they have to say, and respond to that string?

AlaskaAngel

[karenann]

Hi,

I never responded to the, late Herceptin, post because I didn't consider my treatment late. I started Herceptin 2 weeks after my last Taxol in June, 2005. I would be happy to share my story with you and hopefully it will help someone.

I am stage one, node negative, 1.3cm tumor, er/pr+, grade 3, Her2+++. When I was first diagnosed, I brought up the Her2 testing and I was told by both my surgeon and Oncologist that they did not test people with early stage disease because herceptin was only used for metasatic disease. As time went by and all the trial results were coming in, I decided that I needed to get tested and if positive, revisit the Herceptin issue. I came back positive and my onc still said that I was early stage, good prognosis, etc. and I didn't need Herceptin. I decided to get 2nd and 3rd opinions, so I went before the tumor board (different hospital) and to Stanford University. I saw a total of 4 Oncologist and 3 advised me to get Herceptin. I went back to my doc and he had a change of heart and wanted me to do the year of Herceptin. I would have changed doctors if he had not agreeded.

Hope this helps.

Karen

[AlaskaAngel]

Thank you very much for your response.

I was thinking that might be the case for some who didn't respond. It IS very helpful just to be able to hear what others went through, how they worked it out or why they wanted to, or what the reasons were that some of the oncs had for saying either yes or no. It is just so puzzling to try to figure out why the rule is that those who are newly diagnosed need traztuzumab more than those who are over a year out, for example, if the risk doesn't even drop significantly until at least 2 years out.

It is especially important to get a sense of how many are wanting the therapy and how many are successfully getting it and how many have insurance that is paying for it.

Thanks again,

AlaskaAngel

[julierene]

I was dx stage 2a, 2cm, er/pr-, her2+++, 0 nodes at 28 years old. bilateral mastectomy, dose dense AC+T, 2 years later, bone and liver mets - stage 4. Currently taking Herceptin/Taxol/Carboplatin weekly.

[Berta]

I was diagnosed Nov 04, Stage I, grade 3. So Far , so good. Berta

[DeborahNC]

I was offered Herceptin right after surgery in Sept. Both my surgeon and onc recommended it and I began it with chemo a month after my mastectomy.

My insurance company required a path report, then began payments.

[Joannie]

I was diagnosed in April 2003, stage II, 1 node positive, 3.3 cm tumor, Her2+. I took 4 A/C and 4 Taxol, dose dense. I had a double mastectomy, no radiation. No Herceptin. No mets. I think about Herceptin everyday.

[Unregistered]

I was diagnosed at age 49 with Stage 1 IDC grade 2 in October 2000. 1 1/2 cm ER+/PR+ Her2+++. Lumpectomy, A/C x4, and 28 rads. Tamoxifen 9 months Arimidex 3 1/2 yrs. done with treatment... so far so good. When I ask onc. about late herceptin last June he said I would receive if I had a recurrence.

[sadie]

I am so glad I came into this thread!
I now know there are so many success stories out there!
I was dx in Oct 2005 with IDC / Stage 1 / 1cm / negative sentinal node / ER+
PR weakly+/ HER2+++ / Grade 3
I did 4 AC @ 3 week intervals.
I have just received my 3rd treatment of Herceptin/Taxol.
I will then receive Arimedex and get 1 year of Herceptin alone.
I will ask my onc how she feels about beginning Herceptin long after other chemos. She seemed very adament about me getting the Herceptin/chemo treatments at my early stage, but she is a firm believer in Herceptin.
Sadie

[tousled1]

I was diagnosed Oct 2005 with Stage III ER/PR negative, HER2 positive, axillary lymph node involvement - no mets. I opted for chemo before surgery due to large size and high grade tumor and also because of the Holidays. I just finished 4 rounds of adriamycin/cytoxan (A/C). Experienced severe problems with low blood counts and now am scheduled to start 4 rounds of Taxotere after which I will have surgery. My tumor has shrunk, not significantly but somewhat. My oncologist has already told me that after surgery I will have radiation and then a year of herceptin. I am a new member and don't post much but do check all the postings. There is a wealth of information on this site.

[Lisa]

When I was first diagnosed with BC in Oct. 1999, I had a lumpectomy, then mastectomy "to get clean margins", and then A/C/Taxol just to "be safe". The surgeon removed 20 lymph nodes and all were NEGATIVE. But everybody kept saying my pathology "made them nervous." I was ER/PR pos. and HER 2 +++. But back then, I knew nothing about HER 2. So when I asked, they just said I had a very aggressive cancer. At that time, Herceptin was only for women with recurrences/mets.

And for 3.5 years, no mets. I was shocked when they were discovered in my liver and bones, initially, then in my brain and lymph nodes.

I've been on Herceptin now for 2.5 years. And yet, my mets keep coming back. I believe I'm one of the 30% for whom Herceptin doesn't quite do the trick. But we're all so different in our pathologies. So don't get scared. Just live life the best you can and fight if and when you need to.

Love and light,

Lisa