Hi everyone! I hope my post finds everyone well. I have a question, and I'm hoping some answers might give me a little bit of piece of mind. For all of you who have lobular breast cancer that has progressed to the stomach and/or colon, what meds were you on before the progression, and more importantly, what meds were you switched to? Moreover, once your meds were switched, how did you do on your new meds and for how long? I was switched from Ibrance/Letrozole to Verzenio/Fulvestrant. I started Verzenio 5 months ago and Fulvestrant 6 weeks ago (had my first three loading doses and my first regular 28 day dose is in two weeks. My markers went down a bit before starting Fulvestrant, but then jumped up after the second loading dose. I just had a second endoscopy/colonoscopy last Friday to confirm the first one and yes, progression all over my stomach and in my colon. I am pretty sure my oncologist will want to change out Verzenio to Piqray as the Verzenio switch was more or less a hail Mary pass and we weren't banking on a great result, but thought it was worth trying. Honestly, after a whirlwind of procedures, tests, and new shots, today is the first day I had a moment to digest everything happening and pretty much worked myself into a mild nervous breakdown. Am I running out of time quickly now? So many questions, and I'm heart sick. My metz in my bones are NED, but now it reared its ugly head in my stomach and gut. I have not lost any weight, no stomach upset, no gut upset. Endoscopy showed a red inflamed stomach lining but everything else looked normal about it. Biopsy today confirmed progression. Anyway, any advice, or stories of how this has gone for you, is greatly appreciated. My mind is in terrible turmoil and I'm hoping to find some hope. Thank you all, each and every one of you have been angels and your kindness and support has helped me in ways words cannot describe. Take good care, and thank you!
Lobular progression to stomach and colon - SHARE Metastatic ...
Lobular progression to stomach and colon
fiercefighter13 - im sorry you have progression. With ILC it's good that your oncologist is careful and doesn't trust scans. Are they sending your biopsy out to check for any somatic mutations ? Maybe that is why picqray is an option ?
I know someone who has done well on xeloda after ILC progression on Ibrance . Hopefully she or someone else with this experience will respond . Hang in there , you have options !
Hi Aprilfoolz1, thank you for your response. Yes, genetic testing has been done on myself as well as the cancer throughout each change in this journey. I do have the PIK13 mutation as well as the HCD1 mutations in my cancer. (HCD1 is in almost all lobular cancers). No germline genetic mutations came up on me, which is good, I guess? For a lobular type cancer my cancer is progressing faster than all the biopsies would have projected. I'm very scared and sad and trying to internalize this change. I already knew about it from another endoscopy earlier, but biopsies were not taken deep enough in the stomach muscle to get a truly accurate answer. This time I insisted that my regular gastroenterologist do the endoscopy/colonoscopy since he is subspecialized in oncology. Sure enough, there it was, sitting and growing. I think the biggest lesson for me is to always go to trusted doctors, not the first one in line with an opening at the clinic. Even when time does not seem on our side, waiting and patience for the right doctor, moment and time can be so important. I hope more people with this type of progression answer my query, I think getting stories of how this goes will help my mind process this better. Anyway, thank you for your kind response. I'm off to my oncologist's office to re-group and see where we go from here this afternoon. My doctors are moving fast, which makes me feel better, but nervous at the same time. Take care!
HI FF13, I am not far behind you I fear. My Docs have worried since dx about stomach lining cancer and I too am Without bone progression but just feeling more and more tired although nothing shows up. I read an article (prob here as I never use Dr google- too frightening) the article said that a high percentage of lobular cancer ladies were found on autopsy to have liver Mets that were never scene on scan. So you are right to not trust scans but then what to do next when we progress. My very clever oncologist in boston has hinted that after Verzenio fails I will go prob go on xeloda… as I also had no known germline mutations to match to a therapy. I’m am just one step behind you so let’s stay in close touch and see how you go. I am routing for things to calm down in the tummy and not have you lose weight or have any nasty symptoms. Ask for vitamin A( Ativan or other calming thing for anxiety) as that can be the worse part.
Hi Bettybuckets! I was happy to see your posts earlier about your vacation to NZ, I'm glad you got to go and had a good time!! Looks like I'm on my way onto Piqray once my doctor's office and insurance get things sorted out. I am scared of it, but many women have not only managed with it well but have gotten great results so now it's time to be patient, and give it a go with hope and faith for the best. I do take Lorazepam for my stress, my oncologist tries to keep me calm as stress feeds cancer and I am very very stressful and anxiety driven (just my personality). Yes, let's keep in touch, I would love to hear about your wonderful adventures and see that you are hopefully doing well! Take care!!
So sorry to hear about your progression. It’s always so stressful to say the least! I was first diagnosed with bone mets, not lobular, and took Anastrozole and Faslodex for 5 1/2 years. Then I started losing weight for a few months and then had violent vomiting. Still took them forever to find the lobular had gone to my stomach lining. I was then switched to Ibrance and Tamoxifen a little over 18 months ago. It’s been working great. I hope they find something that really works for you! We’re getting closer every day to a real cure I hope!🤞🤞🤞
Thank you for responding and sharing Nocillo, I really appreciate it. I was starting to feel like my stomach was "sensitive", but I thought it was just the Verzenio acting up. My gastroenterologist was shocked when he saw the pathology report as he thought he was seeing an H. Pylori infection causing ulcers in my stomach, which was actually Lobular adenocarcinoma. Also 1 small polyp he thought was a regular polyp turned out to be lobular in my colon. Ugh......sigh********* It's so stressful!!! I've taken Ibrance, Verzenio, Letrozole, and now I'm on Faslodex and still on Verzenio. Waiting for insurance to sort things out for Piqray. I have to be patient, and that's hard for me in light of things. Thank you again for your input! Take care!!
My gastroenterologist, primary and oncologist were all incredulous when my report came back as well. I’m not sure why the onc was. She should have known that lobular shows up in strange places. I’m thinking she didn’t even realize I have lobular.😡 I have a new onc now. It was my primary who finally ordered the endoscopy thinking it was an ulcer. We really have to be our own advocates! Thanks to you I have scheduled my overdue colonoscopy. I’ve been lazy about scheduling one more procedure, but you gave me the nudge I needed. Good luck 🍀!
I'm glad that my post reminded you to get your colonoscopy! You are so right, we have to be our own advocates, even when we have good doctors. It seems that doctors like to follow the "protocols and guidelines" and become blinded to common sense. Plus, all of the protocols and guidelines are designed for the people with ductal carcinoma because they are in the majority 86 to 90 percent......but lobular is a completely different beast. Treating us with the same regimen as ductal patients is akin to treating us for Lymphoma, or kidney cancer, or primary brain tumors. It doesn't work, we must be treated with protocols designed strictly for lobular, but that does not seem to register with doctors, even some of the best doctors. I wish you the very best and a clean colonoscopy!! Take care!
Fiercefighter13,
I can not help with the answers that you are looking for, but want you to know that I am thinking about you right now, and do not want you to lose hope. I know there are many combinations of medications for MBC. Please continue to be strong as you have been!
My thoughts and prayers are with you,
Colleen
Thank you Colleen!! I appreciate your good thoughts and prayers. I truly believe that the thoughts and prayers of many can move mountains. Also, thank you for reminding me not to lose hope, as it is easy to do in the midst of turmoil. Thank you again, and take good care!!
Hallo, I
I can't contribute to the discussion but just want to say, take care and hope your chosen treatment works. X
Thank you for your good thoughts, they are very much appreciated!!
Hi FF, as a lobular peer I just want you to know I’m hoping you get on the right treatment to kick this back. I know KBL has stomach Mets and is on xeloda and it’s working. We are all here with you. I agree on Ativan, get something for anxiety. Keep us posted. 😘 hugs to you.
Hi DDIL1, thank you for your response. I am taking Lorazepam.....every 6 hours at this point because I'm just a huge anxious mess. I'm an anxious person even under the best of circumstances. These are definitely trying days for me. Xeloda is on my doctor's list to try but looks like we will be giving Piqray a whirl first. Thank you so much for your input, take care!!
I take Lorazepam too.. especially around scan time. Keep us posted. I’ll be keeping you in my thoughts❤️
Sending positive thoughts your way. I can't answer your questions but I can pray for peace of mind and clarity.
Thank you! I do very much appreciate prayers, as peace of mind and clarity are a far reach for me at this time. I do appreciate your prayers very much! Take care!
I too have lobular. I have lost weight recently and get full quickly. I’m sure it’s spread to my stomach as well. My markers are also climbing. I have a scan in a week but doubt it will see what’s truly going on. I asked about endoscopy but she dismissed the idea. I was on ibrance and letrezole but have switched to kisqali and letrezole to see if it helps before switching to new combo entirely. There’s a metastatic lobular group on Facebook and most women in there have Mets to stomach and many are doing well on various med combos. I know some pair xeloda with faslodex. Maybe an option for you since you’re already on faslodex? I’ll be getting a second opinion soon to see what I should do next. My current dr said everolimus and examestame. Enhertu has also recently been approved for her2 low. That’s on my list eventually after xeloda.
Lobular is scary for sure but there are many med combos out there. You’ll find something!!
Take care ❤️ Mandy
Hi Mandy!! Thank you for your response. If your doctor is ignoring getting an endoscopy, please get a second opinion quickly, as lobular does like the stomach and colon and almost never shows up on scans. As a matter of fact, my doctor yesterday afternoon agreed that from here forward, the only way to monitor my stomach and colon progression will be through endoscopy which will have to be done every few months. She is also asking for FES PET scan from now on which they just started doing at my local hopsital. It picks up on estrogen rather than sugars like the FDG PET use. I had an MRI, CT and multiple pets and none picked up the stomach and colon progression. It's a hard area to treat, and the further it gets along the worse the prognosis. So if you are not feeling well, you may want to push for endoscopy. I waited on getting an endoscopy and my doctor pushed for it and I finally said o.k., thank goodness. This disease is awful! Lobular is a special kind of awful!! Anyway, thank you for your response and input, I'm grateful. Take good care!!
Thank you. I will push for an endoscopy and will ask about the Fes pet scan!
I had an EGD 2 weeks ago I was scared since I was having stomach issues. It’s is just an inflamed esophagus it’s actually damaged. But no cancer. I had an FES back in April it was very helpful and provided a clearer picture of what was going on actively. Get the tests if you can do you can rest assured you’re getting the scans that can see this damn lobular crap. I’m hoping for the best for all of you. I’m learning .. it’s always something popping up. 😘 hugs to you all
My doctor ignored an endoscopy and finally my primary requested it. Make them listen to you. I had lost weight with rising markers as well. I suffered for months because no one would take charge. You shouldn’t have to. Make them listen!
I will push with my new doctor. I have scans coming up so I need to get those over with first. My current onco made it sound like If scans are good they just treat symptoms. They gave me reglan for reflux issues. So frustrating
Scans are never going to show inside the stomach. Treating symptoms is fine unless it’s cancer! I’m frustrated for you!❤️
Yes, as Nocillo said, lobular does not show on scans...PET, CT, or MRI. My cancer could have been caught 2 years ago if I had the endoscopy then. I've had 7 beautifully clean scans in the last two years while my cancer grew. Now that I had the endoscopy, my doctor said to me "well....we will have to guide ourselves by edoscopy and cancer markers, and probably start FES PET scans since they just started at the local hospital." Well, gosh, I would have rather then preferred looking into endoscopy two years ago, why are we chasing this from behind?! Doctors!! Ugh!
Hi Nocillo, interesting what you say about suffering for months… finally figuring it out.. and this implies you got treated finally and perhaps are feeling better? Please can you tell me more about that as I would like to know that feeling better consists of?
I feel good. No vomiting at all, I eat whatever I want, no pain. Fatigue still gets me, but I pace myself. No complaints, knock on wood!🤞🤞🤞
well that is fantastic! Long may it last. Do you mind sharing-What drugs have you been on and what now?
From my initial diagnosis in 2015 with metastasis to the bones I was on Anastrozole and Fulvestrant for almost 6 years. After the progression to the stomach, I am now on Ibrance and Tamoxifen. Along with the Zometa every 3 months. Are you still thinking it has progressed to your stomach?
I feel yuck all the time. But not bad pain… I am always waiting for the other shoe to drop. The markers are high but the scans are considered stable. I am just going to try and relax and not worry.
Did you ever get your stomach endoscopy? Are you up to date on colonoscopy? The stomach does not show up on a scan. Not sure about colon. I wish you would feel better!
Hi Mandy,
I just had progression to colon. Did your Dr put you on Everlimious and examestame? Those are two drugs mine are suggesting? Do you have any updates you can share ? I’d greatly appreciate it❤️
Fiercefighter13, my prayers and thoughts are with you during these times of stress.
I have lobular (initial BC ILC 2001 [surgery, chemo, radiation]; mets in2017). My mets presented as GI symptoms and they found colon thickening when they attempted colonoscopy, and they found the mets in the peritoneal space during laparoscopy.
1. I was on Ibrance/Letrozole for 3 1/2 years until progression to adrenal gland.
2. Biopsy w/ genetic testing showed PIK3 mutation so tried Piqray / Fulvestrant as next line. I did not respond well to Piqray (wt loss, electrolytes out of whack, lots of inflammation, and disease progression).
3. Explored a clinical trial but decided it was not for me at the time.
4. So next was a quick course of SBRT (stereotactic radiation) to adrenal spot.
5. Then started Keytruda (pembrolizumab) since I had a high PD1/PDL1 mutation. Had great response to Keytruda (colon area shrunk for first time) but developed rheumatoid arthritis symptoms from the immune stimulation. Now have that under control with Humira, and am back on Keytruda. Have my next PET at end of Oct to see how its going.
My oncologist is fabulous and he's already laying out some next options when we have to flip the next card in the treatment rolodex: standard chemo, enhertu (since I'm Her2 - low now, previously it was labeled Her2 neg), and clinical trials that come up all the time.
I agree with the others, there are so many options out there and more coming all the time, that hope is real. Living with this disease is my goal, and so far, so good. I may be slower and creakier than before, but I'm still going (5+ years). I wish the same for you, for many years to come!
Tami
very hopeful thanks tami!
Hi Tami, thank you for your reassuring response. It sounds like you have been through a lot, and you are fighting and doing as well as possible. We are still waiting for further results from my biopsy to see if my Her2 status changed, I have been negative until now. My doctor did mention Enhertu if that status changed. In the meantime, I saw my doctor yesterday and we decided to give Piqray a go, but it scares me. I know that many people do very well on it, others can't tolerate it, and yet others like you said got no benefit from it. I really want to find a drug that works and hopefully be stable for a bit, all of this is so stressful. I'm glad that you have everything under control with Keytruda and Humira. Being stable with this disease is such a sweet spot. In the meantime, I will keep moving forward and work on looking up to the sunshine and not down. Fighting on......Thank you again for your encouragement, take good care!
The Facebook Piqray group is full of good information and notes from folks who are currently taking it. Some really good encouraging stories there too, along with the realities. Some folks have had years of success w/ Piqray, so that's always encouraging. Wishing you well!
Tami
Thank you for the information, it's always good to have as many resources as possible. Take care!
I have liver mets so unable to give advise. I am sending love and positive vibes to you, im sure your onc will have a treatment plan that will work for you xxx 🤗🤗
Thank you Tmbj, the positive thoughts and energy I get from many of the members here, such as yourself, help me manage my general panic and depression with these left turns my cancer throws at me. I did meet with my oncologist the day after I got the news, and she had a big list of meds ready to discuss and agree on. Looks like Piqray is on the menu for the next try. Honestly, of all the medications, it is the scariest to me, but I have heard from members on this site that manage it well and have gotten huge longevity from it, so I will give it a try. Your kind thoughts are very much appreciated, take good care!
Hi! Fiercefighter ! As you know I’m a fellow lobular. Just found out it spread to my colon. I know you’ve been dealing with this. How is it going for you? How did they find it, mine colonoscopy only saw it. And How do they know it’s getting better? Looking for support through this turmoil to understand more. Thank you ❤️
Hi DDIL1! I'm so sorry to hear about your progression in your colon. Like you, mine was found via colonoscopy and endoscopy when I had both procedures done at the same time. All of my scans which were being done every 3 months (PET, CT and MRI) kept coming up NED for over 1 1/2 years, but my markers kept going up every single month. I finally had to have sit down with my doctor and asked her to please stop treating me like a ductal patient....since lobular does not like to show itself on scans and my makers going up every month for 1 1/2 years was sounding alarm bells off in my head. Some of lobular's most favorite places to take up residence are the ovaries, stomach, colon and peritoneal tissues. I had my ovaries removed a week after the lobular diagnosis since I knew they could be a problem with progression and I did not want to take Zoladex for estrogen suppression. They found a few cells in my ovaries after removal, so that was a Godsend having them removed. My markers are spot on in following my cancer spread. My first line of treatment was Ibrance/Letrozole/Xgeva. My markers plummeted the first 12 months and then they started climbing again. We switched to Verzenio/Fulvestrant/Xgeva after 1 1/2 years of climbing markers with my doctor insisting everything was o.k. because of my scans. When they continued to rise on the Verzenio protocol for another 6 months, that is when I insisted on a referral for the colonoscopy/endoscopy. I had no outward symptoms in my gastric system but I knew that's where it would be because of all of the statistics. My stomach was filled with cancerous lesions/ulcers and they found 1 polyp and it all tested positive for lobular, still ER/PR+. We tried Fulvestrant/Anastrozole at that point to no avail, and then Piqray.....that one worked, 9 days on it my markers dumped 300 points, but I had a severe allergic reaction to it and ended up hospitalized from the allergic reaction.....so a great med that could have worked was nixed because of my allergy to it. From there we started Xeloda at the end of this January. It's has been working like a miracle, but the side effects took me by surprise since I had no side effects at all from any other protocol (except the allergy to Piqray). The side effects seem to be getting better with time. My markers are going down each month since January and are now down almost 580 points. We are loosely measuring the progression with the markers since my progression correlates pretty accurately with my progression. I am having an FES PET that "should" pick up the lobular next month. All of my previous PET scans were the regular ones and didn't pick it up. In the meantime, I will probably have another endoscopy this fall to confirm the markers going down and stomach healing is correlative (I'm confident it is). My gastroenterologist says there is no need to follow up with colonoscopies, that following my stomach will be indicative of regression or further spread (thank goodness!! The colonoscopy preps are awful!). Are you ER/PR+? If so, have you looked into FES PET's, so that you don't have to follow up with invasive procedures? What protocols have you tried? I'd love to hear more about your journey, in hopes of finding new ways of dealing with this monster that I have not approached yet with my doctor. Knowledge is power, the more we all share, the better we all are in being armed for the battles!!
boy are we similar! I was diagnosed 1/2022 was on Ibrance, Letrozole, xcheva. Did great for 6-8 months. My markers were down to 62 then the marker creep started. 72,82, up to 198, I had two FES PET scans one in April 2022, the other December 2022 nothing seen. I found out FES does not always see the stomach or colon clearly. I then in December 2022 I had Abdominal MRIw/contrast, CT with contrast all showed nothing. I had EGD September it was fine. They found ESR1 in December so medication switch to Kisquali and faslodex. I had scans at Mayo in March 2023 said I was stable not to worry about markers. My Northwestern Oncologist was concerned and agreed with me. But by this time we knew we needed a colonoscopy and another EGD was in order with a focus on pancreas, liver., and other internal organs. He also agreed that Guardant360 should be done. oddly it just came back and ESR1 that Mayo found in December 2922 is gone and now PIK3ca is there and ERBB2, BRCA2. Northwestern wants to put me in a clinical trial. I just signed up for the trial, but I need to hear from the Gastro guy he wanted to re-sect my colon to avoid an obstruction. So I’m waiting now. Not one scan or FES PET caught this!! It was my insistence and my local Northwestern oncologist who kept digging with me to get the colonoscopy/EGD. I have no faith in scans. I’m glad my local oncologist listens and advocates what I want done.
Looks like we are on a similar road for sure! ESR1 has never popped up on any of my biopsies, including the colon and stomach. The only mutation they have found from the many biopsies so far is PIK13, and CDN1.....but the CDN1 is always carried by lobular so that's nothing special or shiny. It's interesting though, how none of the endocrine therapies worked on hitting my cancer. I started in 2012 stage 1 - 0 and took Tamoxifen all the way up to my metz diagnosis in June of 2019. Some good that did 
My next line of treatment will likely be Elacestrant. The FDA wrote up the approval very sneakily to make it look like it's only approved for ESR1, but indeed it is available for non ESR1, when requested. I hope I can stay on Xeloda for a good long time.....since I never got the durability out of any CDK 4/6's or endocrine therapies yet. From all my research, lobular behaves nothing like ductal and unfortunately most of the protocols are for ductal, it's disappointing. I have met so many women with lobular, I really believe the 10% statistic on lobular is very skewed but I can't fathom why they would do that. Even Dana Farber is now saying that the 10% statistic is very undervalued. Which trial are you looking at? I know there is a new med being tried that hits the PIK13 mutation, but I can't remember the name of the medication. It's super disappointing to hear the FES PET did not pick up the stomach and colon.....that does not leave many options, and that stinks for people like us. Keep me up to date on how you are doing. I hope that maybe the trial drug can walk back the cancer in your colon, rather than a resection. Surgery on top of the mess these protocols wreck on our bodies would be tough. All that being said, we are tough enough to take anything that comes our way........we got this far!! It's good to know your doctor is listening to you and heading to your requests. My doctor is now doing the same after I sat down with her and asked her to treat my lobular as lobular and not the standard "protocol" created for ductal. It's almost as if the medical community is saying all cancer is the same, and they might as well treat us with lung cancer treatments, or renal cancer treatments since they are just about as likely to work as ductal treatments. Wishing you well, and good long time lines on your protocols!! Take good care, and please keep me updated!
DDIL1, Our situations appear to be a bit similar in that I too have a partial large colon obstruction caused by lobular cancer "squeezing" part of the colon. A resection is feasible for you if they can attach two healthy pieces of colon, but if the lobular cancer is diffuse across the outside of the tissue, it may not be feasible to reattach the two sections that have disease. Please check into this before committing to surgery. I consulted with two GI surgeons who both said the same thing, and in my case I am not a candidate for resection surgery.
DDIL1, I am feeling much better, thanks! Being able to eat more has lifted my energy level and I'm now able to walk to the nearby grocery store for shopping. When I entered hospice a month ago I barely had the energy to walk from room to room. Very grateful for the improvement!
Progression 
What next after Ibrance? - Verzenio, Kisquali, Xeloda & more
How to see progression on your blood labs
