Bile duct stricture could be ILC mets
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For the sake of closure, I’ll post here now that I have spoken to my onc and we have a treatment plan. It appears that the tumor pressing on the bile duct is outside the duct. My onc wants to get rid of this badly located ILC liver met fast, so I can have the bile duct stent removed, as infections are common with these stents. The stent will need to be removed/replaced in early October, as this kind only lasts three months before clogging becomes an issue. Since the liquid biopsy gave us no clear target, we will just add a new chemo, eribulin/Halaven, to my current Xeloda in an effort to get rid of that tumor as quickly as possible. We do not want to drop the Xeloda because overall it is still doing a super job keeping numerous liver mets gone. Later, we will radiate the area where the tumor was to try to ensure that tumor will stay gone.
Thank you, Everyone, for your company and support!
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Shetland- Thank you for posting your update and letting us know the plan. I am praying the new chemo will zap that met. Please keep us informed. Hugs.
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Shetland- I am glad that you have a plan. The Halaven got rid of Liwi's stomach stricture so that she can eat again. She also has ILC. She did it for about 6 months and then moved on to Gem/Carbo when she had a progression, but, stomach still working! I hope that it clears it up so that you don't need to keep swapping stents. Are you able to eat ok?
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Thanks, candy and Nkb. Wow, I didn’t know Liwi’s story; it’s so encouraging that Halaven did what it needed to do for her. Yes, I can eat just fine. The stent is doing a good job. How strange that I am going to be taking two chemos when I no longer feel ill.
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Shetland, So glad to hear you have a plan! Hope that reduces the anxiety a bit and that you get good results with the new treatment. I remember Z saying the Halaven was quick and effective and not debilitating. I want you to continue to feel good!
A meetup with current BCO friends would be nice. I am so glad I met Z and we had that “real” conversation.
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Shetland, glad to hear you've got a plan in place! I hope it resolves your mets quickly!
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Update: During my recent stent replacement, the doctor was able to biopsy both inside and outside the duct. No cancer was found, just benign tissue, perhaps scar tissue from treated mets. BUT my onc is still suspicious because lobular is so sneaky and can be hard to detect. The GI doc says that next time (in three months), if it seems the stents have stretched out the narrowed places, we may see if I can go without a stent. I have been off chemo for several weeks, most recently because of an abscess on my liver. This scares me. I hope I can resume chemo soon.
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Shetland- Thanks for the update. You are in my prayers always. So the duct issues may be scar tissue, but what about documented cancer areas? Off chemo are they staying stable? Are you on any meds right now for the cancer? Hugs.
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The one tumor (not near bile duct) grew and another appeared during my time off chemo. I just started Doxil in an effort to hit them hard.
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The liver/biliary surgical oncologist believes he can see that I had a tumor right at the bile duct in scans from quite a while ago. He thinks when it was killed (my word) by chemo, the resulting scar tissue kind of pulled on the duct to cause the stricture. He doubts I can ever go without stents. And though the endoscopy guru had hoped to see that the narrowing had been stretched out by the stents enough that I could go without them, when he removed the stents and tested the flow, he could see it would not work. So now I have my third stent, actually two stents. And for the rest of my life, every three months, I will have to go through this two-hour exchange process under anesthesia, with the sore throat and belly for a couple days after. So I will pay this price for my life. If a time comes that I am not well enough to undergo the procedure, then I have a real problem. This really makes me feel like a stage iv cancer patient. But I am so lucky to have this procedure and the guru available to me! It blows my mind. He is keeping me alive. Generally I am still doing well!
Doxil fail, going to start neratinib (for Her2 mutation) along with something else, after Y90 to the largest most stubborn liver tumor.
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shetland, that sounds so scarily perilous. Our situation is in general and the details you describe illustrate it with so chilling clarity. Hugs.
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Shetland - I'm glad you're stable. Feel free to join us early stagers in this Nerlynx thread:
https://community.breastcancer.org/forum/80/topics/870980?page=1
Some of us have been on it for 9 months. I've been on it for six. We've all had varying degrees of digestive issues and some other mild side effects. I personally seem to have gotten off easy. If you don't want to read the thread I can give you a few take-aways: start with 4 or less pills/day and gradually increase to six, avoid cherries, and if nothing else seems to work on the D, maybe try Miralax. Take care of yourself!
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Anotherone, thank you for that acknowledgment. And the hugs. Thank you for that invitation, hapa. I have been asking myself whether I should hop on that thread, or start a thread in the stage four forum about Nerlynx for Her2-mutated metastatic breast cancer. I think the ladies on the current Nerlynx thread are being treated for Her2+. So, different stage and Her2 status, butsame drug. Hmm.
Now I am curious about what’s up with the cherries. Every drug seems to have a forbidden fruit.
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I would join both threads and start the new one. I think you won't get much participation on the new one because probably not a lot of women are getting Nerlynx for Her2 mutated metastatic breast cancer yet, but when folks do filter in it will be interesting to see how it works for people. The other two threads will be helpful if you have any side effects. That's mostly what we talk about in the early stage thread, since of course we cannot assess the efficacy.
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Shetland, it might encourage you to know that my bile duct stent, which I was told would have to be exchanged regularly, has lasted since December 2013. SIX YEARS so far. I have no idea why. It's clean as a whistle on scans, though. This one is a large mesh metal stent, my third. The first two were plastic and failed quickly. So maybe you'll get better results than you have been told.
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Thanks for commenting on the stent issue, lulubee. And it’s nice to hear from you! The biliary specialist was not a fan of the metal mesh ones. I guess they are hard to remove if there is a problem? I can’t remember what else he said about it. I should e-mail him. He mentioned a new kind of metal one with some kind of coating, and said I should ask the endoscopy guru about it. The plastic ones do need to be swapped regularly. When it gets close to the time, I start getting fevers, and after I get a new one, people say I look healthier. Can you PM me the specs or name of your metal stent and the specialist’s name?
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ShetlandPony - doctors tend to be beholden to one particular medical device manufacturer. Why I do not know, but medical devices are marketed to doctors moreso than patients. I know you like your doctors and your cancer center, but if there is another reputable center nearby you may benefit from getting a second opinion there. The medical supply industry is moving more towards having all-encompassing contracts with hospital groups, so the hospital getting a good deal on band-aids might limit your choices on stents. It's why these medical supply companies keep merging.
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I hear what you are saying, hapa. I wondered about that sort of thing when I learned that my cancer center routinely gives all hospital patients protonix. I refused it the last few times. But as far as the stent, it was more along the lines of this specialist has a lot of experience, has seen a lot of patients, and wanted to warn me that the standard metal stent could be problematic for me. But he encouraged me to ask the other doc if he knows much about the new coated kind.
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It has been five months since my last post, so here is an update in case it will help someone now or in the future. I am feeling better all the time. A second Guardant 360 liquid biopsy and a Foundation One tissue biopsy (second-try liver biopsy) both showed that ERBB2 mutation, and my onc and I decided to employ neratinib via the SUMMIT trial, which also gives me Herceptin and Faslodex. I had a rough start as the dose was too high for me (hapa, leftfootforward, and the others on the Nerlynx thread helped me a lot), but the drugs worked quickly and I am NEAD again. Because of the bile duct issues, my onc added CA19.9 to my regular labs. This tumor marker is normally used to follow gastrointestinal cancers including bile duct cancer (which I do not have), but she said with breast cancer in that area it could be informative. Well, along with great scans and a big drop in the CA 27.29 breast cancer tumor marker, I had a big drop in CA 19.9. Both are low normal now. So this lends credence to my onc’s belief that there was sneaky undetectable ILC in/near the bile duct, not just scar tissue or inflammation which is all the brushings or biopsies ever show. (The endoscopy guru takes samples every time I have ERCP.) Soon I go for my fifth plastic stent procedure. The stents work well and the ERCP has become routine for me. The worst part last time was the fat lip afterward, and the antibiotic-related diarrhea. This time we will minimize the antibiotic use.
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This might be a dumb question, but how do they know you still need the stent?
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Not a dumb question. During the ERCP (every three months), the doctor removes the old plastic stents and tests the flow to see if I can go without them. So far I have still needed them, so he puts in new ones. It may be there is fibrous scar tissue that will not stretch or go away.
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I mentioned this on another thread, but thought I should post here also in case someone is following the saga currently or in the future. After 1 1/2 years with bile duct stents, I am stentless! During my December 2020 ERCP (my seventh!), the endoscopist tested the flow and determined I could go without stents. Boy, was I surprised when he stopped by my bed in post-op to tell me this. I suggested that systemic treatment working had made this possible, but he said that it was because the stents had stretched the duct. My onc and I had a chuckle about this because each doctor believes it is their treatment that did the trick! I won’t quibble.
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WOW!!! I am beyond thrilled for you! What an adventure this has been, eh?
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