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MaggieD
10-01-2006, 08:43 PM
Hello Everyone,

I am new to this forum and appreciate many of you sharing your thoughts and experiences.

My sister had a recent breast cancer mets diagnosis and we have come through several crossroads recently. Her original cancer was in December 2002 at age 40 (mother of 4 kids, all under 10 at the time). She was diagnosed with DCIS, HER2 3+, ER-/PR-, Stage 1, no lymph node involvement. After mastectomy, she elected to have A/C chemo “just in case”. She did very well after that and even ran a marathon so obviously we all thought things were OK.

In Nov 2005, she was diagnosed with a breast cancer reoccurrence (sternum and some very tiny nodules in the lungs). She had a bone biopsy which confirmed breast cancer, however the sample was too small to reconfirm HER2. She received Herceptin and Navelbine weekly, and Zomeda monthly. In March 2006, there was a small lesion found in the liver which was believed to be missed in earlier scans; tumor markers continued down. Scans in May confirmed some progression in both the lungs and liver; tumor markers up slightly. She requested a brain scan (asymptomatic) and numerous small spots were found. She received whole brain radiation, followed by Herceptin and more chemo (a study-drug which had shown good response rates in similar cases including a friend of hers). Unfortunately, this chemo did not work very well for her. She was sick from it most of the summer. She is now on daily lapatinib, weekly Herceptin, and monthly Zomeda. She finally looks good and feels like her old self again. She has no symptoms from any of the above.
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She recently had some new scans to determine if this treatment is working; we have an appointment with her doctor on Tuesday. Even though I remain hopeful, I can’t help but feel like this whole thing has gotten away from us. I scheduled another appointment for her this month at a different medical center just to get a different perspective on things. At this point, I’m not sure what to ask about at either visit. We have asked so many questions before (even some of these), but this is what is on my mind now…
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- is there any hope to bring this under control? the liver mets seems to be of the most concern although remain asymptomatic….is targeted treatment possible given her situation? how has that worked out for others?

- should she have another biopsy to recheck HER2 status? could her HER2 cancer actually be under control and has a different type emerged?

- should we conclude that Herceptin is not working anymore? is there any way to improve her response to Herceptin (different dosage, etc)?

- can lapatinib be effective enough with Herceptin, or should this eventually be combined with a chemo like Xeloda (assuming lapatinib continues to be available to her)?

- if this treatment is not working, what next?

I have learned a lot by reading this forum, but certainly haven’t had a chance to look through everything. I would appreciate any insight or thoughts on approaching these appointments, things that we might want to check into, ideas on next steps, etc. Thanks for listening…

mts
10-02-2006, 12:12 PM
Hi Maggie,

Every now and then I come to the Newcomer/Welcome Wagon forum to "see" whats going on and this time your post caught my attention because you have had many readers "read it" but no responses yet...
I was wondering if you could cut and paste it into the regular HER2 forum...
That side of this site seems to get more activity due to habit and mostly because it was here first.
I am still Stage I and don't feel I have adequate information for your sister. there are several Stage IV's that post regularly on the HER2 forum side and perhaps they can add comments to your questions there. OK?

Best of luck to your sister,

Maria (MTS)

tousled1
10-02-2006, 12:59 PM
Maggie,

I don't have any information for you but agree that it might be to your interest to post on the HER2 Forum also. I know that there are some women on this site who are receiving the Tykerb and experiencing good results with it. I will say a special prayer for you and your sister.

MaggieD
10-03-2006, 08:01 PM
Maria and Kate,

Thanks so much for reading my note and for posting a reply. I followed your advice to redirect my note into the main forum and got several replies there. I will be following up again there (probably tomorrow though -- today was a long day!) to thank everyone and post some information/results from today's appointment. In a nutshell, my sister's scans were unchanged. This is good news to us because previously things were progressing. Her next scans will be in 4 weeks. I felt that we had one of the better exchanges with the doctor today. A lot of credit goes to those here for helping me sort out my thoughts and questions. Anyway, thanks for the support and prayers. I'll keep both of you in my prayers as well.

Maggie