How are people with liver mets doing?
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I’m now feeling very hopeful that the verzenio is working well! I was thinking about asking to change because it makes me throw up a lot and makes me constipated but after your stories maybe it’s worth it.
I had a rod put in my leg so I’ve only recently begun gentle exercising again but thanks for the tip I’ll make sure I keep on top of it. I’d love to try swimming - AJ great goal!
I gave up work when diagnosed again but I have kids in school (lots of weekend sport) and most of my friends work so I’ve been trying to do fun experiences when I can.
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@margesimpson - I was dxd de novo in June '20 with large and numerous liver mets. Verzenio and anastrozole got me to NED in 7 1/2 mos, and it lasted 3 years (maybe longer - I'll know on my next scans). Generally, I feel well except side effects from the meds. It beats the alternative.
I have to say, I'm surprised a doc gave you a timeline like that.
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seeq that’s great news, I am feeling optimistic and my husband snd I keep joking that I’ll be back at work soon!
I had to ask about my prognosis because I was really sick a few months ago.0 -
Margesimpson - you might ask your doc about a dose reduction. It's pretty common. I asked for a dose reduction after I reached NED, and it was a great QOL improvement (less GI problems, and bonus- more energy, and some of my thinning hair grew back in).
There's a thread for Abemaciclib/Verzenio in the Stage IV forum with a lot of people's experiences.
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ah thank you- that’s exactly what I would like to do. I appreciate you sharing your story. My liver function didn’t improve until I swapped to fulvestrant so I was hoping I could stop the verzenio- I didn’t realise reducing it was an option. I dread taking it in the mornings because within 40mins I’m feeling sick despite trying lots of anti nausea tablets (and cannabis drops). This gives me anxiety if I have things planned because I don’t want to be sick in public. I have very thick hair but since being on it each morning I lose a lot.
I’ll as my MO on Thursday when I get my scan results.
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My wife was told 1 1/2 to 2 years, and now she is going on year 7 with extensive liver mets. She had some good quality of life. It all depends on how you respond to the drugs.
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I'm at 9 months on Xeloda. Scans at 6 months were "stable", but scans today show liver progression. Enlargement of multiple hepatic lesions. One was 1.6 cm x1.6 cm now 3.5 cm x 3.1cm (this seems huge to me) Also a new lesion 8 x 4 mm (small). I see my MO on Monday. She has talked about Enhertu. I have the ESR1 mutation so maybe Elacestrant is possibility. I've had a good summer, working in my yard and garden. I don't think about the cancer when I'm working in the yard and I've actually felt pretty good. I know things could drastically change now.
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@weninwi - I've been thinking of you and wondering about your latest scans. I'm glad that you've been feeling good, but so sorry to hear the progression news. :( I will keep you in my thoughts as you navigate a change in treatment. That part is never fun, especially when you have to switch from a treatment that seems manageable.
Food for thought, but one of the things the MSK doc suggested for me at the first sign of progression was to do a liquid biopsy (analyze circulating tumor (ct) DNA). She said that you can get results in about 5 or so days and then know what is active in your system. Since mutations can change, you may or may not still have the ESR1 mutation. I'm not sure if this makes sense for your situation, but I thought I'd pass the info on just in case.
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jsniffs,
Thank you for your thoughts & support. I did think about asking for liquid biopsy since it's been a year since my solid tumor biopsy. Your suggestion based on the advice you've gotten, gives me confidence to firmly request the test. My MO hasn't seen my scan results yet, so hasn't left a comment.
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@weninwi - My Xeloda experience was similar. 3 month scan showed almost all liver lesions gone but by 9 months I had progression. I was bummed because I found Xeloda tolerable. I’m currently on Enhertu which is a rough drug for me but that is not the case with everyone. Many tolerate Enhertu better than I. If you go that route, I hope Enhertu is good to you. Hugs.
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rk2020,
Thanks for your support. How are you doing at now? Did you go to a lower dose of Enhertu? Is it more tolerable? Have you had scans since starting Enhertu?
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@weninwi Something to ponder…I had a Guardant 360 liquid biopsy done shortly after I started Xeloda. And I recently had a Foundation One liver biopsy done. I found the liver biopsy results much more informative. Of course, a blood test is less complex than a liver biopsy but the biopsy was still very easy.
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@weninwi and @rk2020 - Rk brings up a good point. The liver biopsy is more informative if that is all you need to focus on. In my situation, I ran into scheduling delays for biopsies and then having to wait for FoundationOne results on top of that. This all happened over the holidays, so my change in treatment was delayed for a couple of months. I also have multiple MBC clones floating around, so that is why the MSK doc recommended targeting what is most active through the liquid biopsy. Everyone is different. @weninwi, I wish you the best with your convo with your MO.
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rk and jsniffs,
Thank you for the additional thoughts, considerations. I'll ask about both a liquid biopsy or repeating a liver biopsy since it has been a full year since my first liver biopsy. I know my liver biopsy results were multiple pages and detailed. I spent a lot of time studying the results - very informative. Thank you again.
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Enhertu has been a difficult drug for me. After the first full strength infusion, I tried 80% but still felt awful for most of the 21 day cycle. So then my MO gave me a 50% infusion and gave her blessing to drive the 1500 miles to visit my son. Of course, my husband did the driving while I slept almost the whole way. 50% dose was still rough so I decided to call it quits with Enhertu at my next appointment on 8/17. Then I got a call that they could still give me my infusion on 8/17 but my MO will be out of the office. I’m waiting for my MO to call me so that we can discuss whether to struggle through one more round of Enhertu (and at what dose because I don’t think 50% has the efficacy I need so why bother?) OR do I wash out and move to Lynparza when she is back in town. I should gets scans in early September but MO hasn’t scheduled yet.
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RK2020—- I have heard from other people (in my local Zoom support group) about how the side effects of Enhertu is VERY difficult. I cringed when you first posted you were starting it. I hoped it would be easier on you. I don't know if Enhertu will be in my future (I am HER2 low, they use it on HER2 low right?), but I don't know if I would try it based on what I am hearing from those that do.
I am on Lynparza. My biggest SE's are fatigue and nausea. I took a dose reduction 3 months after starting it. The nausea got better with the dose reduction. But I still have bouts of nausea at times, almost 2 years into being on the drug. No vomiting, but the nausea and increased mouth saliva. And some days I cannot even look at pics of food (commercials or ads on social media showing food).
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@candy-678 Thank you for sharing your Lynparza experience. If necessary, I still have 4 different anti-nausea meds from when I was on a CDK2 trial earlier this year. On that med, I had diarrhea 6-8 times a day in addition to nausea. I still remember my doctor saying that if I could tolerate the CDK2, I could tolerate Enhertu. Not so. I’m super sensitive to drugs so having to reduce my dose wasn’t surprising but feeling this bad on a super low dose was. If it was only a few days per cycle that would be one thing but for me, it lasts most of the 21 day cycle. But my story doesn’t have to be your story. I’ve seen women post who have literally been on Enhertu for years, post pictures of their vacations and have a good QOL. It’s just crazy how different our bodies can react to the same drug. I’m at the point in my journey that I’m getting tired and weaker so I’m sure that’s not working in my favor either. I’m a quality girl. I’ve always said that I don’t want to linger. I want to live. I don’t want to be miserable even if the drug is working. It’s a hard call to make but it’s the right one for me.
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candy-678
Do you have a BRACA1 or BRCA2 mutation? Or can Lynparza be used for MBC even if no BRACA mutation?
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weninwi- I have the BRCA mutation. Cannot remember if it is 1 or 2. I had the genetic testing (for my family members) and was BRCA negative, but the liver tissue biopsy showed positive for a BRCA mutation.
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Worries…..I progressed on Xeloda and will be starting Elacestrant ORSERDU, after authorization received and then after filling and shipping by my specialty pharmacy. It all takes time, and I expect to be off treatment about 2 weeks IF things go speedily, which adds to my worry. I had progression in all the lesions in my liver - the biggest lesion went from 1.6 cm x 1.6 cm to 3.5 cm x 3.1 cm - so it basically doubled in 3 months and seems "large" to me, and I have one new small lesion. When I saw my MO two days ago I talked about the large lesion and her only response was "The liver is a large organ". My labs have been good to OK so far and thankfully I'm feeling OK physically. Any comments or thoughts about liver lesions? Thank you.
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Weninwi- if it makes you feel any better, my largest liver lesion was much bigger at diagnosis (plus another large one and lots of smaller ones,) and my first line of treatment beat them all the way back to NED. I'm over 3 years out and only now waiting/watching to see if there's possible recurrence. I'm curious about your next treatment, so I'll be watching (lurking in) the elacestrant thread, cheering you on. I wish you well.
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seeq,
Thanks for responding. My understanding is that Verzenio is especially effective on liver mets. I also was on Verzenio for 27 months and my liver mets shrank. But I finally went off, not due to progression, but due to bowel wall thickening. The radiologist considered it "drug toxicity". I'd go back on Verzenio in a heart beat…..especially Verzenio paired with Elacestrant, but this combo is only available in trials. But thanks again for sharing; I appreciate having someone to talk with.
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Dear weninwi, I second seeq - if drugs work, size can be reduced instantly. Hmm… I was just thinking… from size-volume delta over time and your ki67, we could calculate approximate time between cell division cycles. If it is short (cells are very active and many divisions happen), maybe go for some old-school chemotherapy combo? I see from your signature that you did not have chemo because of Oncotype Score at the time of diagnosis. Have you considered, for example, a taxane with your MO? I know, these days we almost get lost in targeted choices (there are so many) but I always feel that it comes from paradigm of trying to "prolong" instead of trying to "cure", and this is why no one tries old school "heavy guns" first, although they also can be effective, and is, for example, a golden standard first line in HER2+ mBC… Anyway, I usually have a different mindset than many oncologists, who try to treat mBC instead of trying to cure it (however elusive that thought might be).
Hugs, Saulius
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Hi, my first post to this forum.
I received my stage 4 diagnosis last August, so I'm one year in. At first, just bones but didn't take long for it to include liver. I have had 3 lines of treatment (CDK4-6 inhibitor, Afinitor and Xeloda), but nothing is working. I've had liver progression every scan. I'm about to start on Enhertu. Didn't think I'd hit the infusion chemo route for another year or two.I could just really use some words of encouragement. I feel my life disappearing before me.
Thanks,Linda
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Linda,
I share your concern about progression in the liver. Have you had a liver biopsy or liquid biopsy for genomic profiling to look for mutations that might guide treatment decisions? Enhertu was also presented as a possible next treatment for me, but I opted instead to try oral Orserdu, based on a ESR1 mutation. I've only had oral chemo (Xeloda), but Saulius above has some interesting thoughts & perspective on traditional IV chemo. You'll be in my thoughts and prayers. Please keep us informed.
Wendy
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Saulius,
I don't know very much about chemo, so I appreciate your thoughts and perspective on tradition IV chemo. I don't really understand your comment, "from size-volume delta over time and your ki67, we could calculate approximate time between cell division cycles". Could you explain that a bit. I'll save your ideas as I expect the time will come. Thank you.
Wendy
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@linda2119 I’m sorry to hear that your past treatments were not effective for long. That’s a gut punch for sure. I just had my 4th Enhertu infusion. I have mets to bone and liver. Honestly, the severity of side effects of this drug can be unpredictable. Some continue to work while I could barely function on the initial dose. But the success stories on Enhertu can borderline miraculous for some of us. I have not yet had scans but my tumor markers dropped almost 50% after just 2 doses. My first dose was at 100%, second at 80%, third at 50% (to allow for quality time while traveling) and last week I received 60%. I hope Enhertu kicks cancer’s butt but is kind to yours.
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rk2020,
Thanks for your update on Enhertu. Your tumor marker response and better quality of life on reduced dose is reassuring. I'm not on Enhertu yet, as I opted to try Elacestrant first. But I'm running into problems getting the drug approved and filled. I've been off treatment since Aug 7 and this makes me very nervous.
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