How are people with liver mets doing?
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Capecitabine‐related liver lesions: sinusoidal dilatation mimicking liver metastasis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4891475/
I find it simply too coincidental that so many of us are experiencing progression in the liver following the intake of capecitabine....
Gum doctor, Grannax I'm so sorry to read news regarding your progression.
I truly hope it's a false alarm...mine were biopsied and confirmed as MBC to the liver, BUT when they performed a genetic analysis they couldn't find enough material to determine if any mutations had occurred, which, of course, it's even weirder...but is there anything straightforward about cancer treatments?
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Liwi, I’m so sorry you’re experiencing these setbacks. I hope whatever they do next makes a big difference...
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Frisky,
Thanks for the link to that article. It's quite interesting.
As far as your biopsy goes, I read that a bit differently from your read -- the business about not having sufficient material to determine if any mutations had occurred? That sounds more like they didn't have a large enough sample to test? I only raise that because on my first metastasis, in 2006, they barely had enough material to determine the ER/PR and Her2 status. Since the sample was all there was, we never got a definitive answer and just proceeded on assumptions from my original cancer.
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Heartbreaking to hear of any progression with our treatments for our pesky liver. I'm thinking of you and so sorry! We are all here collaborating information, I can only imagine you will find the next best treatment. Not knowing when I will face progression with treatments, I'm praying for all our MO to find the most suitable treatment for long term stability or NED! I love to see all the different paths that we each take and how much knowledge we gain from sharing this adventure. Thank you!
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it certainly helps to hear from all of you. I am confident that my MO has plenty of options to choose for me. Personally, I'm ready for the big guns. My liver has only responded to y90. But, I think I need to have systematic for awhile. One of my liver mets has uptake of 8.8. That's high, and a lot higher than three months ago, plus there are ten new ones that appeared. The medistinal one is getting bigger and can cause serious problems. If it's big enough and presses on the nerves to the vocal cords it can paralysis them and you can't talk. Mine is very close to the esophageal, too. Some symptoms I'm having correlate. Hiccups and gravelly voice. Scary. It was rnb who experienced the loss of one vocal chord. She's on a new thread "8 year anniversary with organ mets"
Plus my lung is still full of tumors, including pleural effusion. Systematic for me, I think.💞
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Grannax2, will you have your liver mets biopsied in case your status has changed?
I had big guns with my original dx with liver mets (widespread to both lobes, lesions too numerous to count with diffuse scattering). I was given Adriamycin and Cytoxan with lowered amounts so my liver wouldn't die from the dosage. It kills quickly, but hard on your body..3 months of life saving chemo hell.
But it gave me my life.
Sounds like you are heading to IV chemo. Don't be afraid, you are tough and will endure.
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Grannax- Praying for you. You are strong. You can do this. Love ya.
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Grannax2 thank you for updating us. Praying fervently for you
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Grannax, prayers that the new treatment is easily tolerated. Let us know what your MO recommends.
Liwi, so very sorry to hear you've been in the hospital. I had home health through Kaiser for about 3 months, 2x a week at first, then 1x a week after that. I was very satisfied with it. Nurse was compassionate and addressed everything - messaged my different doctors with issues that crept up. I'm sure whoever your network works with will be good. Also praying that the gem/carbo will settle things down. Sending love down 680 to you.
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Grannax- I am doing very well with Doxil after Xeloda failed. Love to you, MJH
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Grannax, Sorry, that was not the news you were hoping for at all. You sound ready for iv chemo so at least that won’t be another shock to accept if that’s your MO’s recommendation. Still keeping you in my thoughts and hoping this next treatment does it’s job and fights those mets
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Man this is a wild ride. Sending out support and good wishes to all. Gumdoctor and LisaMarie, you know some people have a genetic polymorphism that stops them from processing capecitabine properly and gives them extreme side effects quickly. I wonder. Grannax2, the scanxiety is over for now thank goodness and you and your onc can now take action. Liwi, I am concerned that the ILC is starting a march down my GI tract, too. Scary. ILC is a nasty beast.
My update: They could not safely get core biopsies and want me to go back for ERCP again with more specialized equipment that they have to special order. So recovering from anesthesia and gas pains and sore muscles and sore throat and all that has to be done again. It appears half the docs think it will be a new kind of cancer and half think it will be ILC. This would be the first time it actually interfered with my body’s workings. Not happy.
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So sorry Shetland. So, sorry, remind me again. ERCP --so issues with gallbladder?? Possible cancer in gallbladder?? Sorry just trying to understand. When will they do ERCP again and you can get answers and treat this bugger??
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Jaylea Did you have a paralyzed vocal chord? I'm worried about that as a result of my mediastinal lymph node is getting bigger and worse. Evidently it can press on nerves enough to cause serious issues with voice, swallowing, eating etc.
I had a second liver BX in December, no change. ERPR + HER 2 -. Plus I have ESR1 with eliminate AI. Plus I'm heavily treated with numerous chemo during my four different DX. I'm complicated but I know my new doc can do complicated. I wish she would call.
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Shetland, thanks for the info. I have read somewhere that is a possibility. You stay tough and keep your head up going forward. Grannax , that goes for you too. You ladies are so strong and brave to go through this fight of the unknown ups and downs. I watch my wife battle this everyday for the last 5 years without complaint and think, How, why, what she must be thinking and still never misses a beat. Plus we have a 6 year old son with ADHD and is very tough to contend with at times. She is a true inspiration as you all are. You are all very helpful and will be in my prayers Evey night.
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Has anyone hear about localized chemo trearnents for stomach or other peritoneal mets? I somewhat recall reading about a process where they would infuse/flood just the stomach with chemos to directly get the chemo on the mets. It sounded interesting, the Idea of targeting the effected area. But I don’t recall where I saw it or what it was called.
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Grannax...you might want to start choosing your own chemotherapy agent. Your MO will likely make a list and ask you to pick one, since there's no way of foreseeing what will be effective unless you try them. Other than, having them take a good chunk of your liver mets to get analyzed for what might be effective prior to starting your next treatment. Y90 of course would be another option, but I'm willing to bet, your MO will want to do a systematic treatment.
Based on JFL experience, I chose Doxil.....because the infusions are once a month and I got to keep my hair. Whatever you do, I wish you only the best of luck!!
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Liwi over heard of chemoembolization to the liver. But I don't know about it to the stomach or peritinem.
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BenJev, you might be right, but I was told they had successfully extracted 4 core samples.
The real problem, I suspect, was that instead of using one of the cores to analyze and protect my interests, MSK gave them all to Pfizer to be used for for one of their stupid drug clinical trials that I foolishly subjected myself to.
Of course, I've been very angry with them, and will never join another trial ever again, even if it meant Aliens were about to land on earth.
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Shetland be strong. This too shall pass. You're one of my ILC hero and I wantyou to get good news and a great outcome from what will need to get done. Sending you much love and a warm embrace.
All of you progressing, please check the Fenbendazole thread and educate yourself. There’s real hope out there, on what can be a viable additional alternative for you, to be carried out inconjunction with whatever conventional treatments you’ll be undergoing.
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Liwi,
There is a process that was developed by Dr. Paul Sugarbaker who is at Washington Hospital Center in DC. It is a heated chemotherapy that is infused into the peritoneum and abdominal area. It's not chemoembolization, but rather a full on chemo bath for the internal organs. However, he will not use it with breast cancer patients because of the possibility that there are mets elsewhere. There are other docs in the country, though, I believe, who will consider breast cancer patients. Someone on these boards had found someone in Nebraska, I believe, and maybe somewhere else. I think it may have been EV11. Good luck. When I first heard about this, I thought it would be a great treatment for bc mets for some people.
Good luck.
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Liwi, you might want to check out Bestbird's guide. I am pretty sure she mentions some localized treatment specific for peritoneal mets. If there is any place where I think you'd be able to find someone to perform something like that, thats California!
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Liwi, it is nice to hear from you although I wish you had better news to report. Thinking of you. I am not familiar with localized therapy to the stomach or peritoneum but what BevJen describes sounds quite interesting.
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Grannax, IV chemo can be harsh but it can also do its job very well in times of need when other options are not working. I have grown to appreciate it as it has kept my cancer in check for many years. Not ideal but the best option sometimes.
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BevJen and Liwi,
The treatment you're describing is heated chemo and the nurses call it "shake and bake"! There's a woman on FB who has posted extensively about it. She had it once a few years ago and just had it a second time. Recovery is apparently very, very rough. You may want to send her a PM on Facebook. Her name is Nicole Ama Caballos and she lives in Nebraska. Best of luck!
Grannax , I was completely opposed to IV chemo when I first got diagnosed in 2003 (stage 1), because I was more interested in alternative treatments then, and swore I'd never take it, although I was being treated by the King of Intensive Chemo (there's another term for it but I can't remember...). When the cancer came back in 2015, it was extrememely aggressive with subcutaneous lumps popping up on my arms and neck and growing like crazy, so when my MO at MDA said we needed to hit it hard and aggressively immediately with the dreaded Red Devil (AC), I said hell, yes. He had consulted with his group at MDA because my presentation was so unusual. It saved my life - the lumps started melting away after the first week - and my side-effects were not bad, as long as I stayed ahead of the constipation. They front-loaded me with steroids, anti-nausea meds and Ativan, so I was kind of in la-la land on infusion days. I also have a funny story about my first chemo, but I'll save that for another day. I had another type of IV chemo late last spring/early summer when I developed the liver mets. It was carboplatin, but the combo companion wasn't gem/carb. The second one was a chemo derived from May Apples, but I can't remember the name. It wasn't too bad and didn't require much in the way of pre-meds, but I did have to use the Neulasta patch. Tick, tick, tick. Alas, it didn't prove to be effective.
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Yall have such good advice. Shetland so sorry, what a mess. I hope the second ERCP gets what it needs.
Doxil is the one t hat does not cause hair loss? Does it matter that I've already had my lifetime maximum of the red devil? It was back in 92. I've heard some take Abraxane at this point. I had it in 2009. It was good because they only used benadryl for pre med. Taxatere was horrible for me. They had to heavily pre treat me with high does steroids. I turned into a lobster plus the steroids turned me into a monsters. That was in 2001. Is Taxol the new one for taxotere?
Thank you Frisky, I think she will offer me several. I'm going to vote for doxil. I hope she call today. Yes, I think y90 will have to wait. I had a recent BX in December. It showed ESR1 but only listed faslodex as a possible TX.
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Grannax,
Good luck to you with all of this.
Just wanted to add here that you mention faslodex in your last sentence. When I was just deciding on treatment after progression with my MO after about 16 years on letrozole as my only treatment, we did not yet have my Foundation One report back yet. We briefly discussed what ifs -- such as if an ESR1 mutation showed. If I understood her quick answer to that, she felt that because Faslodex operates differently from the AIs on your system, it might not be an issue. (I also could have misunderstood her.) As it turns out, I did not have an ESR1 mutation show up in F!, and I am on Faslodex.
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Grannax, Doxil is different now, it’s a new formula. They fixed some of the problems associated with it.
Your Mo should be able to tell you if that’s a safe option for you. But, it seems to me that 27 years have passed since you last took it, and it should be okay.
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bevjen. You are on it now? Is it working? Are you taking it with another drug or by itself? I'm very interested in how you are doing on it. It might be an option she presents to me.
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Grannax,
I started on Faslodex a month ago. Have had the three "loading" doses. Will be starting Ibrance with it next week. The studies show that it's a longer PFS and OS if faslodex is combined with ibrance or other drugs of that class.
No scans yet, but so far, I feel absolutely fine. Not going to get scanned for a bit bc still dealing with healing from microwave ablation in the liver. Bloodwork looks okay, but that's not been a problem for me.
Good luck.
Bev
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