Are there any members of this group that currently have metastatic breast cancer that has spread to the abdomen/stomach area?"

[PeabodyTerrace]

I would like to get in touch with other survivors who are dealing with metastatic breast cancer that has spread to the stomach/abdomen area--mesentery, omentum and peritoneum. My original diagnosis (1995) was invasive lobular carcinoma (mastectomy, chemotherapy, and tamoxifen), and I had a local recurrence to the chest wall in 2005 (radiation and Femara).

[Nocillo]

Sorry to hear this and yes, my lobular spread to my stomach lining. Lobular tends to attack the digestive system according to my oncologist. I also have ductal which is in my bones and stable since 2015. They switched me to Ibrance and Tamoxifen when my stomach issues were discovered. So far, so good, knock on wood. Do you have specific questions? Not sure if I can answer them, but we’re in the same boat.

[PeabodyTerrace in reply to Nocillo]

Thank you for replying. How long have you been on the Ibrance and tamoxifen? So far I am holding steady on the IBrance and Letrozole (starting my 6th cycle).

[Nocillo in reply to PeabodyTerrace]

I’ve been on Ibrance and Tamoxifen for a year now. I’m hoping for a long run at it. Prior the stomach diagnosis I had been on treatment for 5 years. It’s very difficult to judge how long things will work and indeed, how to try and plan for the future.

[Georgiamjb]

Sorry you are going through this. I have Lobular which spread to my abdomen and stomach lining 18 months ago. I recently switched to Cape/Xeloda and so far so good. I was on Ibrance for a year prior to that. I wish you all the best. Take care - Suzanne

[PeabodyTerrace in reply to Georgiamjb]

Thank you so much for responding. I am on my sixth cycle of Ibrance and Letrozole and am holding steady. It gives me hope that you were on Ibrance for a year before switching. Once the Ibrance stops working for me, I have been told there are a few other options I can try. I am just trying to get an idea of how long people with stomach mets survive. I am taking each day as it comes and making plans with friends, but the fatigue is getting to me and I am unsure if I should make any long-term plans (such as a Disney cruise with my grandchildren). I know everyone is different and there are no concrete answers but knowing that you have been living with this rare metastasis for 18 months so far has given me greater hope. Thank you! Cheryl

[Georgiamjb]

Always good to have hope!

[tab78FN]

Hi Peabody Terrace. Sorry to hear about your dx but welcome to this wonderfully supportive group. I was first diagnosed with ILC in 2001 (orig dx 2001 ILC Stage IIB/IIIA, mastectomy, chemo, radiation, tamoxifen/arimidex) and did quite well for a long time. 2017 started having GI troubles thinking it was a colon issue. Turned out to be metastatic lobular in the peritoneal space - kind of all over the organs. ER/PR+ HER2-. Was on Ibrance and Letrozole for 3 1/2 years until progression to adrenal gland. Had a tumor biopsy of the adrenal spot, still ILC and they did the genetic studies. PIK3C mutation so tried Piqray. Unfortunately that didn't work well for me. Side effects caught up and a couple nights in the hospital to get my electrolytes under control and it did not work on the tumor (so double bummer). Now on third line of treatment - immunotherapy (keytruda/pembrolizumab) + fulvestrant IM injections. I did have some targeted radiation to the adrenal spot and will have a PET scan next week to see how its all working. Feeling so much better than on Piqray so hoping this will hold me for some time to come. There is a Facebook group for folks with Metastatic Lobular Breast Cancer and a ILC Sisters group (not limited to metastatic dz). I wish you well in your journey. Tami

[PeabodyTerrace in reply to tab78FN]

Tami, thank you so much for that information. Right now the Ibrance/Letrozole combination is keeping me stable. Once it stops working, the next step would be to put me on Piqray and I was wondering what to expect with that. Especially thank you for sending me the two Facebook MBC groups to contact; I will explore those as well. It is reassuring to hear that you have been thriving for five years. When I was first diagnosed, I was told I might be here for about 2 1/2 years. I wish you the best on your third line of treatment and hope the PET scan is good. Thanks again for responding! Cheryl

[OneLump22]

I just was in February. My Onc started me on Xgyva shots once a month for 12 months (I think she said). MBC. Rad dr. said it looked like the spleenic area of abdominal wall.

[PeabodyTerrace in reply to OneLump22]

Thank you for responding. I don’t feel so alone now knowing that there are others going through MBC to the stomach/abdominal area. I wish you well and if I can be of any help, let me know. Cheryl