Hi @Glynnis and @Fifilamour. Sorry I am late to this convo. I have lobular MBC. Mets in bones back in 2021 and late 2022, it spread to my stomach lining, and I have 1 impacted lymph node. I'm triple negative. I did 7 months of chemo this year - Trodelvy (because I'm TNBC) which worked on my bone Mets. But I needed to swap to Gemcetabine CarboPlatin to deal with stomach Mets, which I completed 5 cycles. It did seem to work, tumours markers came down 50%, CT and pet scans reported the disease as stable. That was late Aug.
Then 1 month later, the stomach pains start again and I ended up in ED over the weekend. (It was my 3rd time in hospital in 6 months related to my GI tract shutting down!). CT scans and gastroscopy show the disease is still active in my stomach wall and the peritoneum. My markers have doubled! I go on chemo again next week, just not sure which one.
So, yes Lobular MBC is tricky. Stomach Mets is becoming more common with lobular. Main positive is that it tends to be slow growing, although mine seems a bit more on the fast growing side. Stomach pains and trouble eating are a regular side effect. I have a good dietician. I take Omeprazole 40mg to reduce the acid produced by my stomach, and have altered my diet permanently to low soluble fibre (eg lots of soft food). I don't know if this will fix the stomach flare ups.
I send my love to you both. Good luck with your next scan results. And I will keep you posted with my treatment. I wish we all had a magic solution. The chemo treadmill just gets tiring after a while. This will be my 6th line!! 😥