metastatic lobular carcinoma to peritoneum

[CLC-52]

just diagnosed with metastatic lobular carcinoma to the peritoneal. Will start Letrozole/Kisquali soon. Anyone with success on this drug? It’s relatively new.

[HbbM]

welcome to the club no one wants to be part of but has some of the most amazing members you’ll ever meet in your life!

I just started Anadtrolzole and Ibrance so no experience with those two but the search feature will be your best friend. Im sure more comments will filter in and you’ll find lots of info in other posts.

[Nocillo]

I have no experience with those drugs, sorry. I do have lobular, however. Would you mind sharing what your symptoms were and how they found it had gone there? Besides the original breast tumor, mine has also gone to my stomach lining. I’m trying to learn more about it so I can keep watch to catch it if it pops up somewhere else. Good luck to you.

[CLC-52 in reply to Nocillo]

Hi Nocillo, I had an appendectomy November of 2021 and for months afterwards I kept feeling this tightening in my abdomen when I peed. And fluid collection in the abdomen showed up on cts. Most recently I’ve had bloating and pain after I eat, another symptom. My last August ct showed peritoneal thickening and my CA 27-29 was creeping up over 100. I had a liquid biopsy and Pet to confirm this past March. And I start Kisquali in a few days.

[Nocillo in reply to CLC-52]

Thank you for the information. I hope the medicine works for you!

[Shelly1009]

Welcome and sorry you had to join us. I've not been on that combo but I've been on Ibrance and Verzenio which are the same types of drugs. I didn't have long term success with them but there are many women who take them for years and years before needing to switch. Also wanted to chime in as I have the same diagnosis. I was officially diagnosed with peritoneal mets in Feb 2020 but based on symptoms I was Stage 4 at my original breast cancer diagnosis of Stage 3 Lobular in the Fall of 2016.

I wish you long term success on that combo but please take comfort in knowing that there are so many options for us now and they continuously come out with new treatments for us. Good luck!!!!

[CLC-52 in reply to Shelly1009]

Thank you, that helps a lot! I wish you best of health also!!

[KarenandLinda]

Hi there. I’ve not had that combination but gave he ad Ibrance and Letrezole. Unfortunately I was taken off Ibrance because of the risk of one of the side effects. I am still on Letrezole there are mild side effects such as joint pain but otherwise I’m fine and the tumour is stable.

[CLC-52 in reply to KarenandLinda]

That is great to hear….not that you were taken off Ibrance but stable on Letrozole. Thank you!

[Fiercefighter13]

Hi there, I have lobular metz as well. Mine started in my bones and I was on Ibrance/Letrozole/Xgeva. It was short lived, and my markers started shooting up, metz were found in my stomach and colon by endoscopy and colonoscopy (scans kept coming back as NED because they were not picking the lobular up) so I was moved on to Verzenio/Fulvestrant/Xgeva and that did not have any impact on stopping or slowing the cancer down. Moved on to Fulvestrant/Anastrozole.....no good either. After 3 1/2 years of trying CDK 4/6's with endocrine therapy my doctor scrapped them for Xeloda (oral chemo). Works like a charm so far. As far as side effects, I had none on the CDK's and endocrine therapy, but they really didn't hit the lobular very well. I think Kisquali has similar side effects listed as Verzenio and Ibrance. Everyone reacts so differently to each of these meds, it's hard to predict how your body might react, or not. Always remember, doses can be lowered to help tolerate these meds and they are just as effective at lower doses for many. Lobular is very different than ductal and most of the research and meds are geared for ductal, so it's important to keep up on markers and scans. Be careful with scans though, as many lobular metz are easily missed by most scans. FES PETs are best at detecting ER+ lobular metz. I wish you well on your journey and I hope you do well on your meds, with minimal or no side effects. It can feel like a grueling journey, but it is manageable with the right support and doctors!! Take care!

[CLC-52 in reply to Fiercefighter13]

Good to know Fiercefighter! I also got second opinions throughout the years and one from MD Anderson. The onco there told me all lobulars act differently too. I guess it varies from person to person. Thank you for the advice!

[HbbM in reply to Fiercefighter13]

how long have you been on Xeloda? Glad it’s helping you.

[Fiercefighter13 in reply to HbbM]

I'm starting my fourth month on Xeloda. My markers have gone down from 586 to 109 in 90 days. My markers only went down modestly on Ibrance/Letrozole but after one year started climbing. The lowest they went on Ibrance was from 176 down to 76 and that took 6 months. After that, they started climbing......kept climbing after switching to Verzenio/Faslodex.....then took huge leaps on Faslodex/Anastrozole. I did Piqray for 6 days and that cut my markers in half in those 6 days, but put me in the hospital with a severe allergic reaction to the Piqray. Then came Xeloda. I know that markers are not supposed to be that closely followed, but my scans are all NED, however my cancer progressed severely to my stomach and colon found by endoscopy and colonoscopy, none of the scans picked it up. I'm very lucky that my markers are spot on at following my cancer growth and medication efficacy. I do three pills twice a day for 7 days on and then 7 days off. My first week on Xeloda was pretty brutal, with severe stomach issues and nausea so my doctor cut me down to 2 pills twice a day and then I worked back up to 3 twice a day over then next month. Now, after being on it three months it's very tolerable. Fatigue is my biggie on Xeloda, but my doctor prescribed Ritalin and I take 1/2 a child's dose once a day on one or two days on my on weeks. Outside of that, I feel better than I have since before I was diagnosed with metz which is great.

[HbbM in reply to Fiercefighter13]

that’s great you’re doing so well on it. I hope it continues for a long time for you.

[09092004]

Hay, the same situation here, the best is first to test via R. G. C. C test aka Greek test, to see on what drogs your cells reacts the best, I am on Fulvestrant, for now everything is going well, I wish you all the best

[CLC-52 in reply to 09092004]

good to know…thank you!

[Haneen2012]

my my mom started Kisqali and femara since June 2021, it is almost two years. I think she’s tired, you can tell from her face. But she never accept it.

She’s been stable for the past two years( since we discovered the metastic). She goes to work 5 days a week and she cooks almost 4 times a week. We are Muslim, so she was able to fast all Ramadan. She also travelled three times this year, last trip was a 10 days trip to London from Amman-Jordan.

I’m so great full for kisqali, we’re praying it keeps on working as long as it can.