For those of you that have lobular, what was your second line treatment after ibrance/letrezole or similar combo?
My onco seems to be leaving it up to me on what treatment I want to try. Not sure if I go with a parp since I have brca 2 mutation or xeloda or afinitor plus aromasin? Do I go for a trial?
Would love opinions or med combos that have worked with those of you with lobular.
Thanks! ❤️ Mandy
Hi Mandy, my doc nearly picked xeloda so I know it will be up next but then I got foundation one report and from it he felt that Verzenio would still work… been on it since April 1 and got a great scan and my bones felt good and I hiked up some amazing small Mtns and ebiking well… but my ca 27-29 just jumped 100 pts… and they think maybe that sneaky lobular is in stomach lining… so just figuring all that out… in 2 weeks I had hoped to go see friends in Nz. Not sure now.
I fear stomach Mets as well. I have lost weight (I was small to begin with so this is very worrisome) and I don’t feel well after meals. I go in soon for bloodwork but I’m sure my markers will be elevated! I just don’t feel great.
Ok let’s both stay in close touch as I feel the same. Fierce fighter has been helpful as she has it. And her mom had it… she saidthar pineapple extract was helpful.
I’m lobular too. I’d like to join and follow I also just found out from Tempus sequencing I have a BRCA mutation. I have lymph and bone. Thank you
Glad we found each other as I have lymph and bone too!
I was on Ibrance/Letrozole for two years when the symptoms came back, so I decided it was time for a change. I knew something was brewing again. Switched to Xeloda/Faslodex. I’ve been on this 11 months. Tumor markers have dropped 200 points since. Still high at 116, but that’s because I’m covered skull to femurs with bone and bone marrow. They dropped more on Xeloda and Faslodex than they ever did on Ibrance and Letrozole. So far I’m happy with my choice.
So glad you are doing well! I fear faslodex shots because I’m very small with very little “meat” on my bones lol I wonder if I could do xeloda without the faslodex? Or paired with something else??
I don’t either, but they haven’t been too bad. I’m not sure if this combo is used by many doctors. I’ve looked online and don’t see much info about this combination. I also do Xeloda on a 7 on/7 off schedule to help with side effects.
Interesting. I will ask my onco about this combo. It seems most people do xeloda by itself.
Your symptoms in your stomach sound like mine did. I could barely eat and lost 17 pounds pretty quickly. I’ve gained about 13 pounds back on Xeloda.
Yes I’ve lost about 7. I only weighed 86 pounds to begin with. Down to 79! Very worrisome. Fullness, indigestion, sick to my stomach sometimes. My scans in may were good but markers rising. I know my dr is going to want to do a scan but lobular hardly ever shows on scans in stomach lining (from what I’ve heard). I’m hoping she’ll let me switch before I do scans based on markers/weight loss etc.
Endoscopy is your best bet if you are having stomach problems. I have lobular, with a PIK13 mutation, but no BRCA mutations. I went from stage 1-0 and I was told my odds of recurrence were almost zero......then 7 years later (and taking Tamoxifan that whole time) I started having back issues and demanded a scan because my oncologist told me I was fine. It had spread to my pelvis, hips, spine, ribs and clavicle. Time for a new oncologist. My new oncologist started me with Ibrance/Letrozole and markers starting creeping up then shot up after 1 1/2 years. We milked it for three years, but then my markers started skyrocketing. I have had perfect clean PET scans every three months this whole time, but my doctor ordered a high contrast CT and the stomach showed up with a problem. So off to endoscopy and treatment change. My doctor changed me to Verzenio/ Fulvestrant. She started the Verzenio four months ago, and I'm doing great on it. I have never had stomach issues, still don't, not even on Verzenio......my doctor is amazed about that, I'm just grateful for no stomach issues. Fulvestrant shots start on Friday with loading doses every three weeks then after that every 28 days. My doctor staggered/staged starting Verzenio and Fulvestrant out by four months to monitor and see if the Verzenio with Letrozole would be enough to normalize everything but it wasn't, so shot time for me. I'm hoping that it calms everything down and my markers go down. You have to be vigilant with lobular and the stomach because it likes going there, as opposed to ductal. Lobular likes to mimic another type of cancer called linitis plastic gastric diffuse cancer if you have a CDN1 mutation. It's not the same and lobular is treatable, where as the one it likes to mimic is not. But it's always better to catch it early and knock it out! Whatever treatment you move on to, I wish you the best and hope you do well on any new treatment for a long time, take care!
I fear faslodex. I’m very small and feel shots would be difficult. I’m going to request the foundation one liquid biopsy to see if anything has changed and maybe will help point me in the right direction as to what my next treatment should be. I have brca2 mutation and I’m thinking I will request a parp inhibitor next. My thought on verzenio is wait until later on down the line after I’ve had a break from a cdk inhibitor. Maybe that will make it more effective.
I’m also very interested in enhertu since they just approved it for her2 low!
Oh, my, yes, that’s a lot tinier than me. I was down to 114. I will tell you I was in a clinical trial for the FES PET for lobular, so if you’re able to get that PET scan, that’s what I would do. It did show it in my stomach, but that’s the only one. Endoscopy is the only definitive way, in my opinion, besides FES, but I understand they have protocols.
I have lobular, diagnosed denovo stage IV in 2004 way before alot of the newer meds. I got almost five years from Letrozole and then over 9 years from Faslodex. My onc, since retired, was an old wise and very respected woman. She recommended not jumping to change meds right away when there is a bit of progression. For me, it has worked well, though I realize that would not be best for everybody. My thinking for myself is that it is better to stay on a med that has worked well a bit too long than going off it a bit too soon. I have also known several women who have gotten longer on Faslodex than they did on initial AI, like Letrozole. I did feel really tired after the first two injections, but that stopped after that. I hope that you will have good results with whatever you are on next.
Wow you’ve gotten long runs out of your meds! I agree with staying on meds as long as possible. I’ve been on ibrance/letrezole for about 25 mths. I’m losing weight and don’t feel well after meals so sadly I think it’s time for something else. I’m just unsure what to try next!
Hi Mandy. Ibrance and letrozole worked for me for almost 2 years. After that I had progression in my liver and was put on Abraxane. Not sure what will be next but so far I'm tolerating Abraxane well. I have lobular too and the mets are challenging to image, same as the primary was. Good luck!!
Is abraxane chemo? Why did they put you on that and not another AI or xeloda? Just curious why doctors choose certain meds over others!
❤️Mandy
Yes it is....it's nab-paclitaxel. She said "I don't think we have the luxury of trying any of the other treatments right now and I want to get on top of those liver lesions". I knew that isn't what most people do but I went with it. If my scans in as couple of weeks are good, as far as I understand, I will go on something more targeted again.
Let me know the results of your scans! Are you tolerating the chemo ok?
yes it's actually not affecting me much at all in terms of side effects - hair is thinning that's about it. Oh, and tiredness but who knows why - chemo, turning 65, snoring hubby lol
I don’t have lobular, but I just wanted to add that I was put on Abraxane/Keytruda for my 2nd line of treatment after Ibrance/Faslodex failed, for the same reason. My oncologist said that she really wanted to knock back the cancer, which showed up in my liver. I was on Abraxane for 4 months. 6 cycles which consisted of 12 infusions. It’s been a year now and all my scans look great -Praise be to God!! I am currently still on the Keytruda. The Lord has blessed me with manageable side effects and my quality of life is really good! I am hoping you get the same results from Abraxane when you have your scans in a couple of weeks and that you will be on the targeted therapy for a very long long time! Blessings to you!
Do you have triple negative? I was under the assumption that keytruda is only approved for that type of cancer. That wld be great if that’s not the case!
No, I don’t have triple negative. I’m ER+ HER2-. I have a high TMB, (tumor mutational burden), and I’m also positive for PD-L1. Insurance denied coverage for this treatment, so my oncologist had to have a peer to peer conversation with the insurance company to get me on this treatment.
Are you on anti estrogen as well or just keytruda? Sorry for all the questions.. I’m just fascinated that they approved immunotherapy for breast cancer (that’s not triple negative)! Sounds like you’re doing great too! Are you in the US? I’m definitely going to ask about this combo down the line!❤️Mandy
Never apologize for asking questions, that’s how we learn -I am happy to answer all questions! No, I am not on any anti-estrogen medicine, just Keytruda and every 6 months I get a Zometa infusion for my bones. I did question my oncologist about that since I am a very high ER+. She did not feel it was necessary as the Keytruda would be more than enough. Yes, I am in the US and I go to a major cancer center. Google KEYNOTE-B49. Merck is in a phase 3 clinical trial using Pembrolizumab( Keytruda), and chemotherapy combined for ER+ HER2- MBC. I am not in this trial, as I just found out about it last month. If you have any other questions, please don’t hesitate to ask! May your next treatment have manageable side effects and may it kick cancers butt! And yes, by the Grace of God I am doing great! 💗 Liz
Thanks so much for the info! I’m definitely looking into it! Did you wear a cold cap with abraxane to prevent hair loss? How are your markers and scans after these treatments?
No, I never used a cold cap with the Abraxane, even though it was offered to me. I did lose all my hair, which was none too pleasant. Losing my hair upset me more than I thought it would. My oncologist doesn’t use markers with me. When I was first diagnosed with MBC, my markers were in the low normal range -go figure. Since then, she has never looked at my markers again. It’s been a year now and all my scans look great! My oncologist hasn’t said this to me, but in her notes that she writes on my patient portal, she has put “patient in remission.” Praise be to God!! 🙏
That is so wonderful! I’m so happy for you!
thank you so much for that encouraging message......scans next week so I will know soon whether it's working. All the best to you and thanks again for taking the time to send me that message. Really appreciated. ❤️
Hi Mandy - I also have lobular which spread to my abdomen and stomach lining. I was initially on Ibrance/Faslodex for a year and dealt with a lot of side effects including losing weight. Some of the weight loss was also because of the cancer in my stomach. When Ibrance failed we tried Piqray briefly (one month) but my cancer changed from ER positive to triple negative. I'm so thankful my oncologist caught that. Now I'm on Xeloda and it's been 7 months. I feel much better than when I was on Ibrance and my marker numbers have come down a lot. I wish you all the best, Suzanne
Hi Suzanne! It seems most with lobular have stomach involvement. And I can’t believe yours changed to triple negative. Seems ibrance fails most of us pretty quickly as well.
Xeloda seems to be a good bet for some success. Do you have any other mutations? Since I have brca 2 I’m thinking I will try a parp inhibitor next but xeloda seems to be a good option too.
I hate this damn disease. I feel so sad today for all of us struggling with scans and meds and progression. Some days it’s just too much..
❤️ Mandy
Hi Mandy - I'm sorry you had a sad day. We all do, but hopefully today is better. Please be encouraged that even though it feels like a rollercoaster, the journey can also be filled with unexpected joyful moments. Just being around my adult children really helps me take the focus off my disease. Take Care - Suzanne
Multiple liver Mets. Treatment changed to abraxane 
Changing treatment, had 12 months out of Kadcyla 
Bone Metastatic cancer treatment
Questions on treatment options
Changes 
