lobular

[marianne88]

hi ladies. Well after 6 years on faslodex and ibrance they found cancer in my stomach lining and ascites. Is anyone dealing with this I am so nervous and scared. They want to put me in a new drug. Thanks so much. Marianne

[Aprilfoolz1]

Marianne, I'm sorry you have progression . Other members , KBML and fiercefighter13 have experienced progression to the stomach area and knows a lot about lobular disease. Reach out to them by PM in case they don't check in and miss your post.

[marianne88 in reply to Aprilfoolz1]

thank you so much. I can’t seem to find them on this site. Can you help?

[Aprilfoolz1 in reply to marianne88]

I see Fiercefighter13 responded so happy she had such good and calming info . Keep us posted on your next treatment and how you are doing .

[marianne88 in reply to Aprilfoolz1]

Thank you so much 💕

[Fiercefighter13]

Hi Marianne! I'm so sorry to hear about your progression. It is scary, it's disheartening and it's always worrisome. You had a good run with the Faslodex/Ibrance combo which is great. There are many medications in the arsenal that can get you back on track. Unfortunately, I blew threw 4 different treatment protocols in only 3 1/2 years, but I'm on a good trajectory now with Xeloda, starting month 13 and doing great. Many of the drugs that you have not tried yet have side effects, just like Faslodex and Ibrance do, but should not impede your quality of day to day life. As a matter of fact, some may even give you a better quality of health than the Faslodex/Ibrance combo did. Are you ESR1 positive? If so, Oserdu may be a great place to start. If not, if you have the PIK13 mutation, Truqap (brand new approval last month) is getting stellar reviews! That is my next stop when Xeloda stops working (hoping I have years on it, but time will tell). Please try to disregard all the information on the internet about stomach and lining metastasis because it's very negative and can be usually easily handled through a new protocol. I have discussed it at length with my doctor, and she did not feel that the stomach/lining metastasis was particularly problematic.....about the same as anywhere else I guess? Xeloda has walked back my stomach and colon metastasis almost completely and my markers finally fell into normal ranges for the first time on this journey on it as well. I also have a complete immune system on Xeloda and although it gives me fatigue and I have hand and foot from it, I feel better than with the CDK/endocrine therapies. Take a deep breath, it will be o.k.!! Lots of meds out there that will give you a lot more time and quality of time!! You're not alone though, I completely get the angst!! I hope this helps!!

[marianne88 in reply to Fiercefighter13]

Omg you have no idea how much this helps. I have been a reck for 2 days and you have put me at ease. You are like an earth angel to me my doctor wants me to start Orserdu and a target therapy. I am waiting until after vacation in Feb and she seems fine with that. I also have some ascites which is concerning too. Thank you so so much ❤️

[Bettybuckets in reply to Fiercefighter13]

Hi FF13- i want to second thst I feel better in some ways than on the CDK 4-6 when I had a lot of fatigue and but now on xeloda I have my usual energy… HFS is of course something to deal with. I swim now vs hike. Glad we can find others doing the same drugs snd walking similar path here.

[marianne88 in reply to Fiercefighter13]

Hi there. I am so glad I found you. I’m a reck. They are starting me on orsedu and verzenio to try to get my pertinieum and ascites under control. Do you have any knowledge on that. Thanks so much. Marianne

[Dragonfly2]

So sorry Marianne...I have no info on this but God Bless these helpful ladies who have given you lots of advice to help you get the best treatment..best wishes for feeling better soon and getting this under control.

😍

[Nocillo]

I’ve got lobular to the stomach lining as well. Once it was discovered (long story) they changed my medicine to Ibrance which worked for 2 1/2 years and now I’m on Verzenio due to my ductal progression. My oncologist isn’t too worried about it either. Try to remain calm. With the proper medication and a good oncologist, you should be fine. Good luck!

[KMBL_]

Hi, marianne88., and thank you, Aprilfoolz1 for the shoutout. I’ve had known stomach mets since October of 2018. I’m on my third line, Orserdu. I’ve been on it for three and a half months. It is usually given by itself, nothing with it. I’m doing fairly well on it, as far as I know. I have the fatigue on it, but I’ve heard that can taper after five months. I’ve also had more GERD, so I take some Prilosec sometimes. Scans aren’t great for me, so I’m mainly going on how I feel. Just in case you don’t know, this med is one where you really need to give it six months to see if it’s working. Some people scan too early, and it looks like it’s not working, but if they hold out, it shows it can work.

Another thing with Orserdu is it has a tendency to make tumor markers flair up instead of down for a few months as well for some, so if you see that happen, try not to panic. It’s very common. I haven’t had the tumor marker flair, but I wanted to let you know.

I’m sorry I can’t answer your question about ascites. I’ve had a little show up in scans here and there, but it’s never been enough where they thought I needed it drained.

If you ever have questions, feel free to ask. I usually check in the day after you post when I get notifications in my email.

[LibraryGeek]

Hi Marianne,

Sorry to hear about your progression but you have had a good run on this line which bodes well. You have been given some great and encouraging information from these ladies and hopefully you feel better about it now. Just wanted to wish you luck with your next treatment- I am sure you will do well.

Jackie x

[love2golfwell]

I'm so sorry you are going through this. I'm glad that Fiercefighter13 gave you good information and hope. Sending you hugs and prayers that your doctor will find a good treatment protocol for you.

[Totheriver]

I am sorry to hear of your progression. Hope they find the right drug for you💕. I was told this week I have progression in my spine. I see radiologist on Thursday. I have had been on ibrance and letrozole for 41/2 years.

[Bettybuckets]

hi Marianne- I am so sorry to hear this. Everyone of us Lobular ladies fears this as we know it often goes there. What a blessing the faslodex and ibrance worked for so long. I got a year out of ibrance then another year from verzenio and am just at a year on xeloda. Last year at this time before I started on xeloda, they scans showed I had some ascites and it had gone into my liver… and I could feel the ascites.I feel much better now. So my point is, let’s just wait and se what happens in the new drug. Which drugs are they suggesting for you?

[Otfd]

Hi Marianne, I am also on Faslodex for metastatic BC. Estrogen +, HER2+. How did they find your progression? I am also on Kadcyla.

[marianne88 in reply to Otfd]

My scans show progression to stomach lining

[PJBinMI]

Dear Marianne, I'm sorry you got scary news like this! I'm a long timer with lobular MBC, diagnosed in March, 2004, so almost twenty years. Initially, I had bone mets only, "extensive" bone mets in spine, pelvis, shoulder blade and a rib. I got almost five years from Letrozole and then over 9 years from Faslodex. The first mets other than in bone showed up in cells blocking my left ureter, and a small met on the surface of my brain, about four years ago. The ureter blockage was removed and now I get a stent replaced there about every 3 months. Stereotactic radiation got rid of the brain met, and now I get a brain MRI every 3 months. I was put on Ibrance with the Faslodex in 2016, but it did damage to my lungs. In 2022, cancer in my abdomen caused an intestinal blockage and I had to have a section of the small intestine removed, along with the valve between the stomach and intestine. My digestion has been impacted. My appetite isn't what it used to be, I can't eat normal size portions of food and I've lost alot of weight. My bowel movements tend to be loose. I wear Depends or pads all the time and I've had "accidents." Last year, the cancer changed from E+ to triple negative. I was on Xeloda for a few months and now have just started weekly infusions of Taxol. All this sounds pretty dramatic, but I've managed pretty well and can still enjoy family, our pets, I wish I had the energy to enjoy travel. I'm fortunate to have great family support, great medical insurance, and live out in the country where we see deer and other wild life.

[marianne88]

wow your amazing ❤️

[Ticket123]

Hi there. I’m sorry you are going through this. I started off with ascites which was very uncomfortable. I had to have the fluid removed a bunch of times. ( I was much more comfortable). Eventually when meds started to work the ascites went away. Hope this helps.

Carla

[marianne88 in reply to Ticket123]

Did you have cancer in your pertinieum? What med did you go to?

[irisF]

Marianne je suis nouvelle sur le forum je viens de France, je souffre moi même d'un cancer du sein lobulaire avec rechute osseuse. Avez vous eu un diagnostic de cancer Brca1 ou 2 j'ai vu que ce gène peut aussi provoquer des cancers digestif.