Hi there! So, here goes more of my saga. I was diagnosed metastatic in July 0f 2019, three years almost to the day. After my initial diagnosis of 1-0 in my left breast in December of 2012, it spread to my clavicle, hips, both sides of ilium, 7 ribs and L-2 in spine. I took Tamoxifen for the entire time in between. I have lobular carcinoma which many of you know, is a different sort of beast than ductal. It's hard to pick up on scans, it travels to different places than ductal, and does not form tumors, but thin strands which is why scans have trouble detecting it. Long story short, I was on Ibrance and Letrozole up until four months ago. Markers started skyrocketing to 5 times what they were before I started Ibrance. My doctor switched me to Verzenio, which I tolerate really well. No stomach issues whatsoever. Had a CT Wednesday, showing mild smooth gastric thickening. Lobular seems to have an affinity for the visceral organs. Pet scan on the 15th coming up and now my doctor called me today and suggested an endoscopy. Apparently all lobular carries a CDN1 mutation that mimics diffuse gastric cancer since it's the same mutation. Here's my question, anyone on Ibrance and letrozole progress to gastric metastasis? If so, how was your protocol changed? Did the change in protocol work? How long and how well have you managed with this type of progression? I'm trying to gather as much real world information as I can because reading about it from internet articles is just terrifying. I'm hoping to hear some good stories of survival. My doctor is switching me to Fulvestrant with the Verzenio starting next week, hoping to get ahead of this. Of course, the endoscopy has to verify everything, but my doctor does not want to wait anymore, given the mechanisms behind lobular and quite frankly I have to agree. Honestly, I'm scared, my brain is racing and at the same time I'm completely in "deer in the headlights" mode. Please share anything you can, the good, the bad and the ugly, information is power, and information is what I need!! Thank you all for listening to my plight!!
Lobular Carcinoma Strikes Again.....U... - SHARE Metastatic ...
Lobular Carcinoma Strikes Again.....Ugh!!
Hi sent you a Pm
Hi glas0824- I am in the same situation as FF13… do you mind sharing the info you sent to her?
I have lobular as well and had been on Anastrozole and Fulvestrant for 5 1/2 years before things started going wonky. Endoscopy confirmed lobular in stomach lining. Switched to Ibrance and Tamoxifen. Feel fine and it’s been 18 months. So, I can’t say that what they switch you to will work, but with all the drugs out there I would think something will work for you. I eat whatever I want and have no pain. Also have ductal in all bones. I hope you do well!
Oh boy, your are dealing with ductal and lobular, that's a lot. It sounds like you have some good long runs on your protocols. I've only been on my first protocol (Ibrance, Letrozole, Xgeva) for just short of three years. My doctor switched me to Fulvestrant almost 4 months ago, markers still climbing and CT showed thickened gastric wall, PET in one week, endoscopy next and first Fulvestrant shot on the 19th. I hate shots. It's good to know you are doing well on your protocol. I hope I can do as well. Thank you for your good thoughts, they are very much appreciated!
I was on Fulvestrant for 5 1/2 years. I hate shots too!!! Now a little prick seems like nothing. Good luck!
I actually had spread to my stomach before I knew I had breast cancer. I have it in all bones and bone marrow and stomach. I’ve actually been metastatic since 2013 but didn’t find out what it was until 2019 when it spread. It will be four years in October since I started having symptoms.
I was on Ibrance and Letrozole for two years before the same symptoms started again. Now I’m on Xeloda and fulvestrant, and I’m doing okay, except for the fatigue and a little hand and foot syndrome. My tumor markers dropped 200 points pretty quickly. I’m on my 11th month with this combo.
That is so good to know, thank you for sharing your protocol information. If changing to Fulvestrant doesn't work, my doctor has suggested either Piqray or Xeloda. For some reason Xeloda seems like it would be easier to tolerate than Piqray. I'm very glad to hear that Xeloda has helped your numbers go down, showing it's working for you. Many medications to try, unfortunately, they bring more side effects for some, but with some luck and grace I suppose, hopefully we can all find good long time and quality of life with the time. I hope you do well for a very long time on Xeloda, and maybe, hopefully, the side effects lessen with more time. Take good care!!
Thank you. I tested for Piqray and didn’t have the mutation, so I can’t take it. I’m not sure what will be next, but I’ll know when it’s time to switch. I start losing weight and am not able to eat a lot. Right now I’ve gained 13 of the 17 pounds I lost and can eat, so I know it’s doing something for my stomach.
That is great! I think we know when treatments are working. Our bodies tell us very quickly (usually) when things are going right, and when they go wrong. Your being able to eat and gaining weight is so telling about your treatment. I think that's my biggest confusion with my meds and how I feel. I feel great, I'm not having any kind of symptom anywhere yet my numbers kept going up for over two years, then skyrocketed in the last 7 months or so....plus the CT results, yet my stomach is doing so well. Maybe we just caught mine earlier than symptoms showing up. How absolutely wonderful for you with how you are feeling, I hope you enjoy some really delicious foods and keep putting on as much weight as you need!!
I am so sorry that you are going through this ordeal. It is a lot to deal with. I hope you get some answers and a treatment protocol that will help you. Sending you hugs and prayers.
Thank you!! I really appreciate your kind thoughts and prayers. Life is so beautiful and I really want to hang around longer to enjoy it.
You are welcome. We are not alone in our journey and should always give our love and support to our fellow travelers. I hope we all have a chance to be here for a long time.
❤️
Hi! I don’t have lobular so can’t offer any knowledge but wanted you to know I’m thinking of you and hope you get what you need to give you peace in your journey. Big virtual hug. 🤗
Thank you for your good thoughts! I appreciate all good energy and thoughts for sure!!
Hopefully the will find the right combination of drugs to help you fight this. It is quite a journey 💕. Theresa
Hi Theresa! Yes, it is quite a journey! Kind of like a crazy roller coaster that you don't get to see where the tracks lead. Thank you for your good thoughts, I really appreciate it!! This is such a wonderful site filled with great advice, stories, and so much care and love. I'm very glad I found everyone here!! Take care!
I've not had any spread to my stomach but have been dealing with metastatic lobular bc since first diagnosis in March, 2004, and my dear wise original onc thought it had likely been present for at least 3-4 years before that. How we do is very individual. I was fortunate to get nearly five years from Letrozole/Femara (along with Zometa for bone mets) and then over 9 years with Faslodex and Xgeva. Had Ibrance for a few cycles but it damaged my lungs, a known "rare" side effect. Now I'm om third line Exemestane for around 3-4 years. Mets in bones only until about two years ago, when lobular cells were found in tissue blocking a ureter (tube connecting kidney and bladder). Had surgery for that and now get a stent changed every 3 months. 2 spots found on the surface of my right cerebellum. Had stereotactic rads for that. I handled that by focusing on the technology--amazing # of physicists on computers during set up and treatment!, Then some cancer cells in lymph nodes near right arm pit. Rads for that. Still having some issues with fine motor coordination in right hand and arm, plus balance issues. I know I am fortunate to have done so well for so long but I have noticed that alot more of us are living longer and better! I hope you will, too. Sending love and healing thoughts and prayers your way....................
Hi there! You have done so well, and for so very long, how wonderful! Even with your setbacks, given the amount of years and your ability to roll with the punches, you are an inspiration! This is a tough disease. Like you said, it's different for everyone, how the disease expresses itself, where and when, I can imagine how hard this is for oncologists to treat. I have my first Fulvestrant shot scheduled for the 19th, changing from Letrozole. I'm not looking forward to the shots, but reading about the procedures you have had done, you really inspire me to be positive and move forward with intention. I appreciate your good thoughts and kindness very much. Thank you, and I will be thinking of you as well, wishing you wellness and more healing with your coordination and balance, and many, many more years of good life! Take care!
If you take the weight off your leg on the side being injected and relax that hip as much as you can, it will help the injection be less uncomfortable. Do all you can to "make friends" with needles! That was one of my first realizations after I got the MBC diagnosis. I'd had a horrible experience with an IV when I was in the hospital as a young adult and that stayed with me for years, kinda like PTSD. I realized cancer would mean I'd be poked alot more than ever! Focusing on breathing can help. I hope you do well on Fulvestrant/Faslodex. Alot of us do.
I am so grateful for the wonderful advice! I am taking notes on all advice I'm getting with the shots. I understand how you felt with the IV situation as I had a bad situation as a child with penicillin shots in the rear and it made me phobic about shots below the waist. As a matter of fact my doctor is having me dosed with Lorazepam to try to help me keep relaxed and under control. What a sense of humor life has....not! I had the same realization as you about needles when I was diagnosed metastatic. I didn't know however, about Fulvestrant and how it's given until about a year ago, and almost lost my mind. Luckily I had time to digest the situation and work with therapist on dealing with it when my turn for Fulvestrant came up. The 19th will certainly be an interesting day at my doctor's office, although with enough Lorazepam I should be o.k., I hope. Well......cheers to all the treatments, the good, bad and the ugly....they keep us alive and able to enjoy life and our loved ones!
I have lobular.. for 2 years and you have made hopeful! Thanks for sharing!
So many wonderful testaments on this thread of people who have lobular, or even ductal metz, and have pushed back and said NO to metz......who have stood up to fight back and live good lives and move forward to live lovely days, weeks, months and years. Finding the ability to just live, without this dark cloud covering every ray of sunshine that is ours as a right to have, is something many of us have had to learn to do, but so worth it. Hope, it is ours by every means of right, and when you say you feel hopeful, it brings so much joy to my own heart and that makes me hopeful as well. Thank you for sharing your hope! You have brought a smile to my face today. Cheers to many years, with many battles, but the war is ours to win!
I have the same type of cancer and have followed Jayne McClellan’s book “How to start cancer”. I also took her class which is easier to digest than the book. I was first diagnosed in 2513 clear for 13 years. It reappeared in ovary which was removed. Started Ibrance and Letrozole. Since my marker went way down I decided to stop Ibrance. Then clear for 4 years. My tumor markers are now on the rise but so far the PET and CT scan can’t detect it. I will be starting zometa to help with bone loss. I will be doing a bone scan to rule out bone cancer this month. My suggestion would be to buy and read the book it is available on Amazon. She also has her own webpage.
Best wishes
Mimi
Hi Mimi! Thank you for your response! I have the book, and yes, I have followed much of her advice. My markers started to rise a little over 2 years ago, slowly at first, but the last 9 months started taking big leaps and bounds. My doctor had me on a schedule of MRI, high density CT with contrast and PET scans every three months because of the markers. The problem with lobular is that it can be very very difficult to detect on any kind of scans (except FES PET's which are not widely available and I have none hear me). More than that, lobular can be almost impossible to detect in visceral organs even by the best radiologists who specialize in cancer. This time around the CT finally picked up a thickening of my gastric wall, which is never normal and since I don't have any stomach symptoms at all, it's that much more confounding for many reasons. I had a complete hysterectomy within two week of being diagnosed with metz in my bones. They found "lobular cells" in both my ovaries, so the hysterectomy was a lifesaving call by my oncologist. This disease is so frustrating, it's like playing whack a mole with a mole playing hide and go seek. Thank you again, and yes, the book is very interesting and has some really good information!! Take care!
My CT scan in 2018 did pick up the ovarian cancer. It just said there was a white spot that appeared to be growing so the oncologist did surgery and found it in the ovary. My brother is a radiologist so helps to read my scans and tells me what scan I should do next. It is like a monkey on your back. The book has helped me a lot I am on all the supplements listed Plus I have a duopathic oncologist and a regular oncologist.Mimi
Oh you are so blessed to have a brother that is a radiologist! I bet it gives you peace of mind to have him double read the scans and reports from your medical team! My daughter is an RN and I have gotten some good advice from her quite often. I think your analogy of "monkey on our back" is spot on. I always say it's my little dark cloud that follows me wherever I go. The book is very informative. I do take most of the supplements as well. It's really weird, I have no side effects from the hysterectomy, none that were quantifiable (except blood work) from Ibrance, none from Letrozole, and none at all from Verzenio, but some of the supplements gave me side effects...go figure!? It sounds like you are taking very good care of yourself. How did you find a duopathic oncologist? That is very interesting!
Go to Facebook and search for “healing cancer support group” and join. It is very informative and you will find files listed of neuropathic and doctors who prescribe any of the drugs that Jane mentions.
Will do! Thank you for the heads up on the group!!
Sending love and hugs to you! Hopefully a new treatment will be successful!
Thank you! I very much appreciate your kind thoughts!
I just want to add my own concern to the others.. Your description is one of the most clear I have read of how one feels with another and another development: " I'm scared, my brain is racing and at the same time I'm completely in "deer in the headlights" mode."All of us here , get it. You are a gift to us. Holding hands with you even if it is in cyber space, for I feel close to you and all facing the realities of our lives and facing our feelings.. Together now. No longer alone.
Thank you Mary 115! Your message brought tears to my eyes. Truly, when you say we are together now and no longer alone, I feel that very deeply with my whole heart. In the last few months, this group is the first place I turn to when I'm feeling scared, confused and need help with this disease, and for those that are in need of a positive thought for the same reasons. At the same time, it is the first place I turn to for comfort and joy with the many celebrations of so many people sharing their clean scans and good news and hope. Thank you again for your lovely message, which so well received to an aching mind. Take good care, and let us all hold each other up to stand up to this disease each time it tries to push us back.
Ahhh. Thank you..., Together!!!
I also have lobular which spread to my stomach lining two years ago. I was on Ibrance/fulvestrant for a year and switched to Xeloda about 7 months ago. I had the hand foot reaction, but am now doing well on a lower dose. I actually feel better on this drug than on Ibrance. I hope you will feel encouraged -Take care!
Thank you for sharing your good news results with Xeloda. It is one of the medications on my list of meds to try. This is truly a tough disease, and I'm finding I need to toughen up in order to fight back, and say "no, not today cancer, I won't let you." I hope you do continue to do so well with Xeloda and get many good, healthy and joyful years with it. Take care, and thank you again for sharing!
Thinking of you and sending a virtual hug … no knowledge of lobular but I hope you soon get the treatment you need . x
Thank you, and I'll gladly accept the virtual hug! Pushing forward, fighting the battle, and today feeling refreshed enough to know this battle is mine to win. Life goes on and there are many beautiful days and moments ahead. Thank you again for your kind care! Take good care!
Hi Gals- I just read through all the good info posted. I am having stomach issues and with lob cancer they have always been worried about it going there next. Nausea bloating… and other symptoms?
Some of the typical symptoms are nausea and bloating which you mentioned, feeling full quickly after eating small amounts of food, stomach acid, acid reflux, trouble swallowing, stomach pain, and can also include lower GI symptoms like diarrhea and constipation as well. Lobular almost always has a CDN1 mutation that allows the lobular to look like linitus plastic gastric diffuse cancer (a totally different kind of cancer), and causes similar features like it such as leather bottle stomach appearance. It is treatable, unlike gastric diffuse, but still needs to be caught early if it goes to the stomach. But, many of the oral breast cancer meds can cause any one, many, or all of these symptoms, so it’s best to get it checked out, better safe than sorry. High density CT’s can detect stomach changes but endoscopy is a better bet.
That is so helpful! I will jump right on it as I had hoped to go to New Zealand in early sept. Hope this doesn’t derail that , but I didn’t realize it is treatable. Verzenio is working so well in my bones… but this stomach thing is worrying! Thank you so much!
My onc wrote to tell me my CA27-29 jumped 100 pts. I asked if I can get scoped to get this party started as I only have 2 weeks before I hope to leave for NZ for a month. You mentioned treatment for stomach lining. What would that be like? Must be something to add on as the verzenio is working on my bones. Any insight will be appreciated!
Hi there, the treatments are the same as any progression with the breast cancer. They will change your protocol if there is a new development in your stomach. It may be the endocrine therapy, the Verzenio, or moving on to a completely new treatment plan. The most important thing is that progression in the stomach is treatable with breast cancer regimens as opposed to the gastric diffuse cancer (which lobular breast cancer can mimic), which nothing works on. I'm really hoping they find your stomach in good shape with no cancer, that is always the best result!
I hope so too! But time is dwindling before I leave on sept 2 for this long dreamed of visit to nz… I would rather stay in same regimen for the month of sept while I am overseas than start something like xeloda which may need to be carefully monitored or dose adjusted. Hmm… I see the doc just 2 days before the trip so that doesn’t feel like enough time to even get the labs back.. ca 27-29 always takes a few days. Today I am more hopeful as my tummy was ok with me not eating very much. Can you tell me how you managed when things where uncomfortable as in dis you tiny portions often, take less fluids with meals, take zofran or other meds to manage bloat and Nauswa? What was it like till the new meds started working? Thank for any advice?
I never had any stomach discomfort. It's really weird, especially on Verzenio! I guess I'm built like a tank stomach wise......I can eat whatever I want and never get sick. My doctor is amazed because whether on Ibrance, Letrozole, Verzenio, I can eat just about anything and it never bothers my stomach or gut.....I have jalapenos, spicy foods, nothing seems to get at me, and I usually drink about 140 oz of water a day, black coffee, and I'm always o.k., that was really the shock to me when my stomach showed up with problems. Maybe it's because I take a good probiotic every day? I can't explain it, my doctor can't either. My doctor did prescribe Zofran and told me to stalk up on Immodium before I started Verzenio, but I never had to use them. I can say though, I have heard that small meals and bland meals are better to eat if your stomach is not feeling well. I'm sure my turn will come up with digestive issues with some of the other protocols, just haven't yet. Gosh, I hope you really have a wonderful time in NZ, and I hope that your stomach settles down so that you can enjoy new foods and just not worry about it! It sounds like a wonderful trip you have planned, and I'm rooting for you, to have a beautiful time!
Hi there Bettybuckets! You have been on my mind all morning, since I know how important this upcoming trip is that you are about to embark on, and I think I might have come up with something to help your stomach do better. Papaya enzyme! My father had esophageal cancer, and my mom had lobular breast cancer, and then got pancreatic cancer and both went to their stomachs. Their doctor had encouraged them to take papaya enzyme tablets to help their stomach digest better and feel better. They are over the counter and natural and some are even chewable, and from what I remember both my mom and dad liked the taste of the chewable ones. I believe some brands even have bromelain, another enzyme found in pineapple that is really great on inflammation. I cross referenced these pills with Verzenio, and they have no cross reactions, just be sure if you get them to get the ones that don't have other things in them (like calcium carbonate, which is what is in Tums), I think the purest forms of supplements are always the best. I hope this helps!!
Yay! I will try them. Are they are a pharmacy or a health food store. I also think I need to eat less. I used to eat more than my hubby but now that make me have tummy aches. I let you know how it all goes. I’m in mass. How about you?
Hi there! I got some papaya chewables the other day from Amazon for my hubby. He has not opened the bottles yet. I got him the Carlyle Papaya Enzyme Chewables and the Windmill Chewable Papaya Enzyme Formula ones. I think health conscious stores like Whole Foods would carry them, and vitamin stores would as well. I will have to ask him to open them and try them, to see if he likes those brands’ formulas. I used to chew on papaya chewables years ago whenever I would overeat. I’m on the west coast in Washington state, born a California girl but moved to the Pacific North West 13 years ago. I really love it here but miss Cali. How do you like Mass? I bet there’s excellent medical care in Mass. not so much here, but I do have an amazing doctor and local hospital. Definitely let me know how the papaya works for you! Please post some NZ pics here on this site, I bet many of us will love to see some beautiful scenery!!
I will get some thru Amazon! Very helpful. I sure will post some pics. I lived in NZ for 12 years and moved back to USA one year ago. Bought a house and settled in. Great health care in boston! Still hoping that my trip doesn’t get derailed last min when I go see the Dr on aug 30th just a few days prior to the trip.
I have a couple of dear friends that are world travelers, each of them has spent a lot of time in New Zealand, and the pictures they shared with me are breathtaking. What a wonderful experience for you, to have lived there! As far as your trip, I think your doctor will want you to go and enjoy your trip.....chances are pretty good it won't get derailed. Have a really fun trip and we will all be on the lookout for some great pictures!!
Thanks FF! Feeling very good today after trip to my chiropractor who really helped my mindset by telling me that I am the healthiest 62 year he has seen in 6 month and he wouldn’t know about my health issues if he didn’t know me so well! That helped me reframe how I see myself.I love Massachusetts and lived here in Plymouth most of my life so it is nice to be home and lots of sewing my family so life is good!
❤️ sounds perfect, family, home, living a good life, that's what it's all about!!
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