metastatic Lobular

[CLC-52]

Recently diagnosed metastatic lobular to peritoneal only and waiting arrival of Kisquali. Started Letrozole a week and a half ago. Am taking Xgeva shots going on 9 years. Is it possible to bring down markers with Letrozole only if you have a slow grower? Has anyone had success with that? I had a Dr. at The Cleveland Clinic tell me this was the treatment of choice before Ibrance was created.

[Kerryd22]

I was put on Letrazole alone in 2015 but it didn’t work for me. But I know a lady who has been on Letrazole for nearly ten years so I’d say Letrazole on its own can still work well.

[Fiercefighter13]

I failed on Tamoxifen, Letrozole, Anastrozole and Faslodex. I have slow growing lobular ER/PR + with no ESR1 mutation. Endocrine therapies do work well for some and not for others. The test of trying and time is the only way to tell if any of these meds will work for each of us since similar cancers react differently from person to person. I wish you the best in your journey, and that your protocol works for a long time!

[kellylinkane in reply to Fiercefighter13]

I think they are trial for lobular going on for ROS1 inhobitor in england should be end 2024 call ROLO now on phase2 .

[Fiercefighter13 in reply to kellylinkane]

Fantastic!!! This is wonderful news!! I’m holding out as long as I can to not take IV chemo!!! Hopefully it will be approved in the US!! Thank you for the great info!!

[kellylinkane in reply to Fiercefighter13]

I also lobular i also hoping this will come to US soon

[PJBinMI]

I have lobular MBC and Letrozole and Zometa (bone med used before Xgeva) and did well for about 5 years. I'm now 19 years in to MBC, and did well until about six months ago when abdominal mets caused an intestinal blockage that put me in the hospital for most of Oct. and required surgery that has really messed up my digestion. When I was diagnosed in 2004, Letrozole was generally the first treatment for those of us with E+ MBC. Alot of us do well on it for years!

[Eliactida1955]

by itself I wouldn’t think but paired with a med it’s usually given. What does the onc want ? Maybe it works different on this cancer- I have lobular of the left breast m b c

[Gardengirl345]

I’m just happy to read some comments about lobular MBC patients doing so well. I have the same. Bone only. Slow growing. ER+. And have been doing great on letrozole/ibrance/zometa for 15 months. But do have the (somewhat constant) worry of sneaky lobular. They are monitoring me with FES PET scans since my bone Mets didn’t show up on traditional pet or bone scans.

[PJBinMI]

I'm a long timer with de novo (from the beginning) metastatic lobular bc--diagnosed in March, 2004, 19 years ago. I got almost five years from Letrozole, and then over 9 years from Faslodex! I've gone to quite a few bc and mbc conferences and met alot of other women with mbc who've done well for long periods of time. Alot got more time on Faslodex than on their first med (usually Letrozole or another AI)! It's an injection, actually two now, which takes getting used to (our heads not our bodies! lol) but nice to not have a daily pill! I hope you can find peace with living with this lousy cancer! None of us know how long we have, but that was true before cancer! Sending warm hugs and best wishes...

[TwithBC in reply to PJBinMI]

None of us know how long we have, but that was true before cancer! Sending warm hugs and best wishes... THIS. ITS JUST FACT. God help me to live in this truth.