pertinieum meds

[marianne88]

hi. I am so nervous. They found Mets in my lining and it is causing ascites. Does anyone have any of these issues. I’m really trying to connect with someone soon. Thanks so much. Marianne

[TammyCross]

Still no reply? I haven't had this. I hope someone who has will reply.

I would be scared, too! It seems to be unusual, and that means they don't know so much about how to treat it. Do you have lobular? I read one article that found that surgery may be the way to go, although it is not often done. Are you at a great medical center with a strong cancer program?

All I can say is that most of us on here have been through some serious stuff, and unwelcome surprises, yet here we are!

[Kerryd22]

Marianne

You might find this link helpful.

inspire.com/groups/advanced...

Kerry

[KMBL_]

I’m sorry for what you’re going through. If you are on Facebook, there is a Support for Lobular mets group, and there are women who have mets to their peritoneum. I have it in my stomach but have not had ascites. Let me know if you can’t find the link and I’ll get it for you.

[CLC-52]

Hi Marianne, I have lobular and had ascites from Peritoneum last year. I also had bone involvement since diagnosis 10 years ago. My doc switched me to Letrozole and have had good results with tumor markers coming down. Are you lobular?

[marianne88 in reply to CLC-52]

hi. Yea I have lobular and it spread from iliac to peritoneum. I so nervous because now I have ascites too. They just started me on trial with orserdu and Verzenio. Hoping it works. I was on ibrance and faslodex for 7 years and it just failed me. How are you doing?

[TammyCross in reply to marianne88]

7 years on Ibrance and faslodex is fantastic.

[ba5083]

I hate to hear this. Unfortunately spread to the peritoneum of patients with MBC and ILC is discovered about 18% of the time. According to MD Anderson bone is the highest noted when using imaging at 34% and peritoneum is 2nd at 18%. Those individuals that passed and had an autopsy done 93% showed it in their peritoneum compared to 65% in bone. I read a comment posted about a month ago from another ILC lady (Gardengirl345). She consulted with a Dr at MD Anderson. Here is the quote from her post. "He also told me that pretty much if you have ILC anywhere in your body you will have it in the peritoneum as well. This cancer goes to that area primarily. " ILC is a total different beast than IDC and most ONCs treat them the same. This was the sole reason I fired my 1st ONC. He was unwilling to entertain that ILC would spread to the peritoneum. Even when I presented the MD Anderson info and was having a lot of stomach and acid reflux issues (nothing showed up on follow up tests). Please see the chart above that I picked up from MD Anderson.

I have included the link to Gardengirl345's post in this thread. healthunlocked.com/share-me...

Metastatic Patterns of ILC (Invasive Lobular Carcinoma) pulled from MD Anderson's website

[marianne88 in reply to ba5083]

Thanks for the info!! 💕

[whitebird2023]

Hi Be careful what you read on the internet. Lobular carcinoma can travel to the peritoneum, it is sneaky. I'm on Ibrance and letrozole and now aromasin for two and a half years. Yes, it is scary!! Take your meds, listen to your doctor, and be positive. Best of Luck!!

[marianne88 in reply to whitebird2023]

thank you. 💕

[Fpmeehan]

How did they find the mets?

[marianne88 in reply to Fpmeehan]

Cat scan

[Fpmeehan in reply to marianne88]

Thank you.

[whitebird2023]

You are very welcome. Just remember that you are not alone!

[Bettybuckets]

hi Marianne- I am sitting waiting for my pet scan to start.. I also have lobular that is in my peritoneal area( thickening here… ascites there.. hard to monitor as always so see thru. My very old oncologist isn’t too keen on the new FES scans that I hear light up lobular patients.. that would be a different problem if worrying cancer is everywhere. This PET today is to see in to tummy better than the CT I had a few weeks ago. He is very suspicious because my markers jumped 100 pts when xeloda had been controlling things for past 16 months… I can feel the small amount of ascites as it feel like you can’t completely empty your bowels. We are now discussing next chemo which will be IV as no more oral options. This is a lot to wrap my head around but I am pretty calm knowing what else can you do? He is suggesting some old school chemo first before the newer ADC as they sometimes cause nasty side effects and he knows I am all about keeping moving/ swimming biking etc… so I am likely to agree to Doxil next knowing that later I will get those ADC conjugates… he hopes I can get a good run or a year .. has other patients that got 2 years but that seems unlikely.. we talked about clinical trial as I do want to give back to our community and now might be the best time as many trials allow for just one line of chemo prior to entering trial. He is not pushing for trial right now because he know I love to travel and when in trials you have to be scanned poked and prodded and I would not be able to be gone for months. On Doxil or other older chemo, I could still get it if I travel to Nz for several months. So I have to factor that into the equation.. battery dying so must hang up.. ask more questions if that was helpful!

Me and my bestie

[marianne88 in reply to Bettybuckets]

I hope your scans go well. I am on a trial. Verzenio and obserdu and hoping it works

[Cowgirl1951 in reply to Bettybuckets]

Thank you for writing this. I just found out I have this. I will be following your journey.

[Bettybuckets]

I was on Verzenio - some funny stories of diarhea that came on suddenly… but not too bad…. What does the obserdu add to side effects? Are you tolerating it well?

[marianne88 in reply to Bettybuckets]

Yea so far (2 weeks). Do you have lobular?

[Bettybuckets]

yes lobular… I often hear stable disease but then have a different type of scan and then they can see the spread in my gut… that is why I got a ct scan a few weeks ago and now just got a PET scan to see better I guess. I find out Tuesday. Feels like ascites to me again

[ba5083 in reply to Bettybuckets]

Praying your scan come back in good order. You are a beacon of light!

[marianne88]

how do you feel ascites?

[Aristophanes]

Hi Marianne,

I had nodules in my peritoneum and ascites last fall with my recurrence. (also throughout my skeleton and some lymph areas). I had fluid on my lungs as well. I have been on Ibrance and letrozole (and zometa) since Nov. In Feb., the ascites and peritoneal involvement, as well as lung fluid, was gone.

[marianne88 in reply to Aristophanes]

Wow that’s awesome. I was on ibrance and faslodex for 7 years but it stopped working so they have me on a clinical trial with verzenio and obserdu. Hoping it works. ❤️

[Aristophanes in reply to marianne88]

Best wishes and prayers coming your way that it does! ❤️

[Aristophanes]

I have not heard of obserdu. What does it do? Is it hormonal or another targeted therapy?

[Kerryd22 in reply to Aristophanes]

Orserdu breastcancer.org/treatment/...

[Aristophanes in reply to Kerryd22]

Thanks! I see now that I know it by its other name! And, I do have that mutation.

[Kerryd22 in reply to Aristophanes]

That’s good news! I don’t know what I have because genomic testing is very hard and expensive here. 😒

[Aristophanes in reply to Kerryd22]

That is so frustrating. I went to MD Anderson and they immediately sent me to have the tests. Sending you hugs, prayers, and positive vibes.