Her2+++ Survivors...Can we roll call?

I need to know that people with Her2+++ tumors survive.....

I am nearly two years from my diagnosis. I had multifocal disease, although the largest tumor was 2.5 cm, and only (!) two positive nodes out of 18 taken, both positive nodes were the sentinal nodes for my two largest tumors. I am strongly PR and moderatly ER positive. I had my ovaries removed because I am 38 now and already have kids...so I am on Arimidex. I finished 15 months of Herceptin (in the adjuvant setting) three weeks ago. I also did radiation and AC/T (started the Herceptin while I was on Taxotere). Double mastectomy started the whole ordeal back in the summer of 2002.

Anyone else care to share?

Please be sure to include:

1. Your stage at diagnosis.
2. When and whether you took Herceptin.
3. Whether you are er/pr positive and what you are on for it if you ARE positive.

Thanks....

Lauren

I was diagnosed at Stage I in October '03, and am HER+ 3+. I am 56 years old and am post-menopausal. I have had 2 partial mastectomies, and just finished my rounds of chemotherapy. My "cocktail" consisted of Carboplatin, Herceptin, and Taxol. On the 28th, I begin receiving Herceptin alone for 9 months. I am also going to go through radiation treatments for 6 weeks, but I haven't been told by oncologist when that will happen. He has also said he will have me take Tamoxafin, which I understand has some bad side effects.

I have been reading the posts regarding Herceptin side effects, and I was hoping that once I was off the chemo, I would be able to start feeling somewhat normal again. I am hoping for NO side effects. I have gained weight during my treatment, and I don't have the energy to get any exercise. I am hoping that I can rebuild my stamina so that I can be more active.

Hi Lauren-

I am Her2+. Am on Herceptin for a year. Was diagnosed stage IIb with 3 positive nodes. ER/PR negative. (Already finished 4 A/C, 2 Taxol, 2 taxotere and 30 rads.) Gained a lot of weight

I can relate to the weight gain. I am trying really hard now to take it off. It is challenging, especially since I never had to be so careful about what I eat as I seem to have to be now....

I was stage 4 at diagnosis nearly 2 years ago. I had possible mets to lungs, liver and one spot on the sternum. I had mastectomy after 6 months of Taxol/Herceptin/zometa. Almost immediately I developed skin mets which, along with lymphedema remain my only problems at the moment. I continue on Herceptin/ Zometa first with Navelbine and now with Xeloda.

Jane

I was Dx. March 2001, IBC, Stage 111b, 44 of 45 nodes positive, ER/PR Neg, had AC/Taxatere, Rt. radical mastectomy with skin graft to chest wall, Lt. simple mastectomy for profalactic, shortly after surgery developed skin mets, then had Herceptin/Taxol, 5 month break then recurrence of skin mets, Herceptin/Navelbine, Herceptin/Xeloda, Miltex (topical solution from Germany)just recently (past 3 months) had Herceptin/Taxol/Carpboplatin. All in this order. Have been set free to wait and see how long I can be out of Chemo. To date as far as we know no organ/bone involvement. Will have follow up scans in June. I hope this helps, Hugs and keep the faith! Sandy

Pathology report of October 11, 2000 finds the following:

Infiltrating ductal carcinoma
ER - neg
PR - neg
Her-2/neu - Positive +++ (with FISH method)
Tumor - high grade
Tumor stage: T2 (was about 1.5cm)
Nodes: N3 - with 8 of 18 positive, three have tumor cells outside the capsule - or metastatic.
Chemo consisted of 12 weekly doses of Adriamycin and 4 doses (3 week) of Taxotere.
Radiation followed with 30 plus 6 boosts. Finished rads Aug. 30, 2001

January 2002 major liver mets discovered. Went on weekly Taxol, Navelbine and Herceptin at that time. Pronounced NED in early July 2002. Stayed on Herceptin with Zometa added.
Today I am still NED and get my Herceptin every 3 weeks and Zometa now every 6 weeks.

We all seem to have some different points to our disease, the main thing is that we FIGHT!

DX 09-08-99 at age 45, Stage IIIB, 3.7-4.6 cm and 2 cm infiltrating ductal, mucinous type but with poor nuclear grade, s-phase low at 3.7%, ER/PR-, Her2+++, 5 of 5 lymph nodes positive. Left mastectomy performed at time of diagnosis.
TX: Started 10-07-99, 4 Adriamycin/Cytoxan at 3 week intervals followed by 4 Taxol at 3 week intervals followed by 34 Rads to left chest, finished 05-26-2000.
01-10-01 Recurrence to skin in chest and collarbone and lymph nodes in neck and collarbone. TX weekly Herceptin/Navelbine started 01-29-01. NED 08-27-01, continued with weekly Herceptin until 04-01-02 when triple dose every 3 weeks was initiated.
04-10-02 Mastectomy right breast
I continue on Herceptin every 3 weeks and hope to celebrate 3 years NED this August 27th, and will also be celebrating 30 years of marriage to my wonderful husband Frank! Every day is a blessing, and we treasure each one. -- ------------------------------------

Diagnosed 2/2002 at age 50 Stage 1 IDC, tumor 0.7cm, all neg nodes, ER PR neg, Her2 3+, Left Mastectomy. No other treatment.
Recurrence to lymphs above collar bone 9/03. Started Herceptin 10/03...now 6 mos later NED...will remain on Herceptin only for at least 5 years or as long as it continues to work.
From Stage 1 to Stage IV in less than 2 years...thats fast progression, so it shows how aggressive Her2 tumors can be...make yourself aware of any changes...you are your own best advocate of beating this!
SHeila

Hi Lauren. We all know just how you feel -- there are days when I am terribly frightened, but I try very hard not to go there mentally. I think of it as "stinkin thinkin". I tell myself that I am doing the absolute best I can (aggressive chemo, excellent nutrition, etc.) and there is nothing else I can do except to continue to enjoy my life. I posted the same question myself back on January 24, 2004 and received some very encouraging replies if you'd like to go back and read them.

Here's my history:
Diagnosed in October 2002 at age 45.
Stage IIB, 2.4 cm IDC, High Grade
ER+, PR+, and HER2+++
1 of 10 lymph nodes positive
Right lumpectomy
Started AC in 1/03 (4 AC, 12 weekly Taxol, 36 radiation, and 52 weeks of Herceptin)
On Tamoxifen - yuck

9 remaining treatments of Herceptin -- I am equally ecstatic and nervous at the same time.
I am going on a 7 day hike on the Appalachian Trail in June to celebrate. Lots of quiet, fresh air, and exercise. Just me and my sweetie.
I am extremely grateful for the wonderful life I've had thus far and hope to continue for as long as I can. I think of this as just a pothole in the road of the rest of my journey.

I hope that you can find peace with this and enjoy every day with your family, friends, and yourself. I'm sending lots of love and strength your way!

Diagnosed Dec. 2003 at age 58.
Stage IIa.
3.8 cm, poorly differetiated, Margins clear. Left lumpectomy and then sentinel node surgery.
Her2/neu 2-3+, Her2/neu by FISH +, amplified with ratio 3.51.
ER-, PR-
Sentinel node negative
Started TCH (Taxotere, Caboplatin, Herceptin) Jan. 2004 through study for early stage BC, Arm III, 6 treatments and then Herceptin for a year. 5 1/2 weeks of radiation)

Will finish last TCH the end of this month and then do the radiation and continue on Herceptin.

Dx 3/28/03 stage 4, her2+++. Mets to liver. Started off with Taxatere & epirubicin until the middle of July. Began herceptin Aug 1st, every 3 weeks.

Scans in July showed a lymph node growing, and scans this last month shows more growth. Mets to lymph nodes under l arm, and in cervicle area, plus small spot in breast.

Having a MRI of brain & cervical spine, bone scan & cxr this Tues & beginning Gemzar along w/herceptin this week.

....nope, not on 'to do' list

20 months with no problems for me, and no Herceptin
Dx Sept 02
2.5 cm invasive tumour, high grade 8/9
ER/PR -ve
HER 2+++ by IHC
20/30 nodes with matting and extranodal spread
no spread to suclavian or internal mamaries.
no mets
My fingers are crossed.

coming up on nearly 3 year survivor. diagnosed Aug. 2001 at age 38 with multi focal IDC with largest tumor 2 cm. 6 cm. DCIS.ER-PR + and HER-2 +++ by FISH. Node negative but with Vascular invasion. Had bi-lateral masectomies followed by Carboplatin, Doxetaxelle and herceptin for a year. Continue to recieve Lupron injections every 3 mon. to shut down ovaries, and Femara. Still no sign of reoccurence, thank God, and feel fine other then weight gain from being in menopause.