Treatment options for ILC ER+, PR + Her2 -

lrsreyes

My onco just notified me that my cancer is difficult to treat because it is in my stomach. I was on Ibrance/faslodex for 1 year but progressed so I am on chemo now (abraxane, carboplatin) I need to know other options since my tumor markers are not going down that much

BevJen

lrseyes,

Question for you: has your MO suggested a biopsy? As part of that, you could have genomic testing done (think Foundation One, Caris Tempus, etc.) The genomic testing can possibly present some opportunities for other lines of treatment for you.

Also, are you being seen at a large cancer center? Living in Cary, NC, you are quite close to UNC, and many good docs from whom you could get a second opinion -- and I definitely would. One thing that I might look for in a second opinion is a doc who has a special interest in lobular (I also have metastatic lobular cancer). A way to determine that would be to research some recent articles related to lobular breast cancer, and see who is the authors' list. You could then try to contact. Second opinions can also be done remotely, if that's something that you are interested in.

Best of luck.

Cure-ious

IRSreyes, BevJen hit all the important points, and genetic testing will be key. A recent study showed that Androgen Receptors (AR) can strongly suppress breast cancer- AR is expressed in like 90% of ER-positive cancers, and Wikipedia says its generally highest in lobular cancers. Enobosarm is an AR booster drug, which looks promising for endocrine-resistant MBC has none of the side effects you get with chemo and actually strengthens muscle and bones. The drug has mostly been tested as monotherapy, but presumably future trials will involve drug combinations that make the responses longer-lasting. Be careful not to take too many chemos because that could exclude you from qualifying for clinical trials (and supposedly lobular cancers aren't super chemo-sensitive anyway).

A trial with Enobosarm is scheduled to begin sometime in spring 2021

https://www.globenewswire.com/news-release/2020/12...

https://www.medicalnewstoday.com/articles/breast-c...

KBL

irsreyes, can I ask how you found out you have ILC to your stomach? You are only probably the second or third person I've found with progression to the stomach, as I have. The way mine was found was through an endoscopy and biopsy. No imaging has ever seen it in my stomach. I lost a lot of weight rapidly and had early satiety. That's what sent me for the endoscopy.

To make a long story short, I was diagnosed de novo, and the cancer is throughout my entire spine and femurs and has been there since 2013, not found out until 2020 that that's what it was. I went six years with no treatment. The stomach mets were found in 2019.

I'm on Ibrance and Letrozole, and unlike your onc, mine has said there are other treatments after these two stop working. She told me chemo is the very last thing we would try. I'm not there yet. I'm still on my first line. It's been 20 cycles. I would definitely get a second opinion.

Have you had scans to make sure it's not in your bones? I am also ER/ER+, Her2-.

Your bio still says IIIC. When were you diagnosed Stage IV?

Also, my tumor makers are high as well. They’ve each only come down about 100 points since starting treatment. One is in the 100s, one is in the 300s, and my CEA is 7.2.