How are people with liver mets doing?
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@saulius yes. I was originally diagnosed and treated in 2015 for Stage II IDC. I had bilateral mastectomies and ATC chemotherapy, followed by almost 10 years of Tamoxifen.
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I just got some new MyChart results back re the liver biopsy I had at the end of July. Previously all I knew was that it is ER positive. It took a long, long time for the other information to come in, but it finally did today. Apparently it is ER/PR+ and HER-, as my cancer has been since the get go. It also mentions, however, that there is a mutation known as AKT1. My onc had suspected that the cancer in my liver might be a bit different than that in my bones, so he wanted the test, and it looks like he was right. I've been on Verzenio and Fulvestrant for about 2.5 years now and it has been working fine except for this liver metastases business. Well, the text that accompanied this new result suggests that Truqap is the drug of choice for those with this particular mutation. I looked up a bit of info about Truqap and it doesn't look like it works very long, as most that I can see who've been on it, have only gotten a few months at best before progression happens. It also looks like it has some pretty awful side effects and can even make you diabetic! Needless to say, I am not thrilled. That said, I have not seen or spoken to my onc about any of this and I will see him sometime next week. My observations here are just that, my non expert lay person observations from just reading a few things online, so hopefully there might be more positive to this than I am inferring. He has wanted to keep me on the Verzenio as long as possible, because it is working everywhere else, so I don't know what he might want to do now. I've seen people who've gotten things like 5 years on Verzenio and I've been hoping to be one of them. He's also mentioned things like Y-90, histotripsy, and other forms of ablation, so who knows. I'm hoping I've grossly misinterpreted all of this, and that there is something out there that could really work for a good while. Bummer.
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3Tree, Ipatasertib is also used for AKT1 mutations, however it didn't do better than Capi
AI Google: Yes, capivasertib has demonstrated durable responses in clinical trials, particularly when combined with fulvestrant for hormone receptor-positive, HER2-negative breast cancer with PIK3CA, AKT1, or PTEN pathway alterations. Studies have shown significant improvements in progression-free survival (PFS), with median PFS values reaching approximately 13 months or more in relevant patient subgroups, suggesting sustained control of the cancer. Patients with certain mutations, like AKT1 E17K, have also achieved durable complete responses, with one patient remaining on treatment for over 35 months.
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@threetree , It must be distressing to have that liver progression. And facing a different treatment. My thoughts are with you.
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@threetree I have liver and bone metastases that regressed under IV chemo in 2023; following this I took Truqap which kept me stable for 6 months before the liver disease returned. I tolerated Truqap quite well, no declared diabetes, and some ES like diarrhea well managed with medication and a low fiber diet. As I have often had to change treatment since my diagnosis, Truqap allowed me to gain 6 months of "tranquility" before switching to oral chemo. This is just my experience, I don't know Verzenio and I understand that it can be difficult and unsettling to imagine changing treatment. I hope you can continue with Verzenio or find a more appropriate treatment given your mutations. Hoping that your interview with your oncologist is reassuring, I send you my best thoughts.
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@cure-ious - How do you do it? You so often have some wonderfully helpful/insightful information to share, and I am always so appreciative of your posts. Always informative and interesting. Thanks so much for this. I will research Ipatasertib as well as the Truqap, and see if I can't learn more. I had never heard of an AKT1 mutation before, and I'm thinking it must not be very common. I don't recall reading about people here who have encountered it. It's all new to me. Also, the 13 month figure you've found for PFS is more than I saw in my cursory search yesterday. I'm only seeing where people get a few months with it at best. What comes after that? Surprised too and happy to see that some have even gotten "durable complete responses", according to your info. I did read yesterday in Google AI that this mutation can sometimes be a two sided thing in which it sometimes causes and encourages cell proliferation and metastases, and at other times can actually help prevent spread. Since my liver mets are growing, albeit very slowly, I can only assume that the version of the mutation I have is not preventing anything.
@AJ - Thank you so very much for the nice thoughts. They are very much appreciated.
@soldanella - I'm really glad to read your comments and hear about your experience. It is very helpful. Thank you for taking the time to share all of this. It's good to hear that you tolerated it well and didn't have any of the blood sugar issues. The 6 months you had seems to be in line with what I've been reading, i.e. this drug seems to help people for a few months, but I'm not seeing where anyone who takes it gets the kind of time people can get with the CDK4/6 inhibitors like Verzenio, Ibrance, etc. If my onc wants to change my meds, it's going to be real hard to say good-bye to Verzenio after 2.5 years, especially since it is working just fine everywhere else.
Well I think I'm definitely getting ahead of myself here and should wait to see what the oncologist says next week. I also have scans next week and he will want to combine all this latest info with what shows on the scans before making any treatment plan changes. He might also have much more info to add to all that everyone here has shared, in addition to my elementary and probably premature and anxiety ridden assumptions. I just can't look at the info that comes back in MyChart and not start researching/investigating what's there. I supposed it's a doubled edged sword kind of habit; sometimes good and sometimes bad. Thanks so much to all of you for your very helpful thoughts and info. You're the best!
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@threetree - if Verzenio is keeping everything thing except this one little, slow-growing liver met in check, it wouldn't surprise me if your onc recommended local treatment for the liver met, and keep on keeping on with the Verzenio. This is your first and only liver met, right? Just me thinking out loud...wth do I know?
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@seeq - Hi, and thanks for the thoughts/insights. Unfortunately, there isn't just one met, there are several, but they are all slow growing. The onc's plan so far was to do what you've suggested, i.e. keep me on the Verzenio and then do local treatment like Y-90 or something for the one main met, at least. Now that this mutation showed up, I just don't know how that will affect the plan. (Hey, I appreciate your thinking out loud and you know a lot!😊)
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3Tree, Well, I can at least speed read thru the literature (as a retired professor), and have this academic optimism that comes from not living/working in the real world…
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Oh, luckyladyinpa, thanks for answering and I am sorry you have to be here with us. It is a club where no one wants to be but it has best people and knowledge pool in the world! Many hugs, Saulius
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Sending positive thoughts and virtual hugs as you wait for your MO appointment. In your pocket ❤️
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@eleanora - Thank you so much! Yes, I'd been chugging along these last 2.5 years, but now have to deal with some new things. I'd love to just continue that old chugging along, even though it involves unpleasant drugs and side effects, as it has been "doable" and stable. I really appreciate your nice thoughts and am sending a hug back.
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I just saw my onc and she’s changing treatments due to progression in my liver. I’m planning to go to Laos with DD and SIL in October or November. I had a choice to try Truqap or go with IV Doxil. Since Truqap has diarrhea as a side effect, I opted for Doxil. Much easier to travel without that going on. So now to get an echocardiogram and a port. She also prescribed Faslodex so not looking forward to painful shots. I feel like I’m in a whirlwind
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I had histotripsy completed in December of 2024. My CT this year (June 2025) showed shrinking mets on my liver. They did, however, find two new, very small nodules on my lungs. My PET scan in July did not show anything lighting up in the liver, nor the breasts (woo hoo!). The report said the lung nodules are too small for PET uptake/imaging. I also had no tumor markers to report when they did a blood test in June (yay!). Now, I know all/any of that CAN change… but I’m hoping things stay stable. I am still on Kisqali and Letrozole (I started these last year after my Stage IV diagnosis). My next CT is set for November.
I hope you (and everyone else) get the treatment and care you are hoping to receive. This disease is quite the battle!
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Hello lovely people, i come here often and read all the posts others post in order to educate myself and learn about all medication and treatment operations. My doctor is gives very short answers and explanations 🙄 and so have to often I have to be my own advocate as some of you might relate.
my health has gone down deeeeeep downhill 😖😒Beside dealing with bone and liver met and waiting for liver biopsy, I was on capecitabine that really didn’t work well for me. I started capecitabine on May 15 and it worked maybe for 6 months and started giving me really bad side effects, fatigue, cough, shortness of breath and tumor markers first went little bit down giving me huge hope this medication might work and the shortly after they jumped like crazy which gave me indication they don’t work anymore, I am dealing with horrible SE so my oncologist agreed to stop and wait for the liver biopsy mad see what’s next. While waiting got liver biopsy my condition worsen. Extremely shortness of breath and cough and no ability to even do basic things, going to washroom is a task that literally makes me breathless. I have been complaining about cough (which wasn’t this intense but it was still there) since July and they completed 3 CT and all of them came back inconclusive, they were not sure if it’s infection or cancer metastasis around the lungs and they did nothing for 2 months until I got to this point that I can barely get out the bed.
on Aug 22 I did bead and orbit MRI as I also again developed diplopia and I went to see my radiologist to review the scans, she looked at it and said it looks better then April scan (when I first developed diplopia and got it treated with 5 radiation sessions which helps) and this time there is nothing for her to do and she sent me home.
FFW 2 weeks later, when things turned down hill I went to the hospital and they did full check off so many tests, redid chest CT and head MRI and on the CT compared no changes to liver and bones since Aug 18 scan but again suspected severe pneumonia and this is what was summarized “Worsening intrathoracic metastatic disease, with diffuse lymphangitic carcinomatosis. Unfortunately the findings have significantly worsened compared to August 12, 2025.”Also on the MRI this is what’s indicated: Since August 22, 2025 there are has been significant adverse interval progression of multifocal metastatic disease involving the orbits, dura and brain as detailed above.
Also my liver biopsy came back and tumor slightly changed it was ER/PR+ HER2- and now is ER+ PR- HER2-
In absolute shock how how is it possible things to progress so quick in 2-3 weeks. I think we should have dealt with lungs back in May when I started complaining about cough but no one took it seriously. And I honestly think Aug 22 MRI definitely misses something.
I am at the hospital since Monday trying to stabilize livings and breathing but it’s not going as I was hoping, they are keeping me on oxygen, antibiotics and steroids in hope that helps but it maybe improved my situation by 5% if even that.
I am am meeting radiation oncologists on Monday to see the plan for the head but I have silence treatment from my oncologist that I have been calling every other day trying to get in touch with her to just get some idea for the next plan (assuming chemo)I also asked for blood transfusions thinking that might give me some boost before chemo but answe is no. My hemoglobin is at 80 (normal levels 120-140) and they don’t give this until it drops until 50. I can’t even pay for it or bring my own donor … not acceptable
I am super frustrated and fed up with this broken Canadian medical system and have been thinking and considering some US cancer centres for help (I.e. MD Anderson or some other centre that you lovely people could suggest??)
truly hope to get some feedback as I really want to get stronger to get through the next chemoOr whatever is ahead of me just to be around my precious girls (12 and 14) 🩷🩷
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@choosinghope - Hi, I posted over on the other thread that you also recently posted on. I'm going to cross post here below. Also, I am really happy to see what you've posted here about pretty good progress and stability, since the December histotripsy procedure. That is really encouraging. Keep it up!
@choosinghope - Very sorry to hear about the pain. I hope you get past that real soon! I'm also surprised to hear about it. I too am trying to decide about what to do about liver mets. My oncologist and the interventional radiologist are talking about things like Y-90 and other forms of ablation. No one has mentioned SBRT to me. Both have also told me about histotripsy, but have said that it's still very new and there is much unknown (like your pain?). I have been in touch with the local hospital here that does histotripsy (not my regular hospital) and they looked at my scans and said that I could be helped, but what they can do would be "palliative not curative". I held off on all of this for the last month or so, as I was scheduled to get a liver biopsy. That biopsy did show that as expected and presumed, the spots on my liver are indeed breast cancer and that I have an AKT1 E17 mutation (not good). I'm getting scans today, so will see what the liver situation looks like currently and then go from there. My oncologist and interventional radiologist seem to lean toward local therapies like Y-90 first, and probably over histotripsy due to it's new nature. My oncologist told me he'd had a patient who did the histotripsy and wound up with a disaster. He didn't go into detail of course, but it sounded like the person needed some sort of major invasive surgery after the histotripsy debacle. He told me this after I told him I was leaning toward it because they really tout how "non-invasive" it is. He says, not so fast! Also, like you, I had a consultation with a nurse at the location that does the histotripsy so that she could gather info first, before I see their doctor. She also said that histotripsy is just another tool in the tool box and it isn't some sort of panacea for liver tumors. She also said that I could do Y-90 first and then they could still probably do something for me along the histotripsy line. The IR also told me that you can do a variety of these various treatments and that doing one does not preclude the ability to do others also. My oncologist seconded that notion. I was told that none of these procedures are perfect and that some of them work better on different tumors than others depending on size, location, etc. of the tumor.
I saw my oncologist a few days ago and he would prefer to try these local therapies (Y-90, thermal ablation, etc. ) first over systemic therapy if possible, and I think the IR was of that same persuasion. They want to see the results of the scans I will get later today, and then we will talk some more. I'm hoping to have that consultation with the doctor who does histotripsy also, after getting more information. I would sure like to put off systemic therapy as long as possible, because it will mean stopping the Verzenio that I am now on and have had a pretty good run with (2.5 years).
Again, I am sorry about the pain you have and hope it passes soon. I also am very grateful to you for posting about your experience, because I have been finding it very difficult to hear about people's experiences with histotripsy, due to it's newness, I believe. I've been wanting to hear about all of the experiences that I can, and I think yours has been the first, so thank you so much for posting!
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@vik2ri - So very sorry to read about your ordeal. I unfortunately have no answers or suggestions for you, but I am sending lots and lots of good wishes your way and have my fingers crossed that you find some sort of help and solution to this problem. Can you get a second opinion with the Canadian system?
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@vik2ri Sorry for all you've been going through. I've been very happy with my treatment at Northwestern Memorial Hospital in Chicago. Recently I've been working with Memorial Sloan Kettering in NYC. Both places are excellent cancer centers. Certainly couldn't hurt to get a second opinion and to pay out of pocket for treatments that you currently can't get. As we know, cancer is life or death and we can't take our money with us.
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@threetree thank you for your kind wishes. Unfortunately second opinion request would mean changing your another oncologist which I have done once already back in April and unfortunately when such thing is requested it takes at least 2-3 weeks to get it done which means I would be without any oncology medical support and I can’t afford that right now…. As I said our system here in Calgary is beyond broken and unfortunately I think that’s the case across Canada hence why I am looking and seeking some potential help somewhere else
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@chicagoan thank you so much for your feedback. Yes we are ready to pay out of our pocket whatever we can just to get some help.
we even downsized our home and have lots of support from the family just trying to find really good centre with good options for my health.
I will definitely look into your suggestions… thanks you so much 🙏🙏♥️2 -
@vik2ri I have no recommendations with a closer second opinion for you, or any advice on your Canadian situation. But I can relate to your cough and SOB issues. That happened to me three and one-half years ago. It took my third visit to the ER before they finally admitted me with pneumonia and I went through similar treatment with antibiotics (wide open both arms) steroids and breathing treatments. Fortunately it worked for me. We moved to Colorado as soon as I was released but I now need oxygen 24/7 since I live at 7000 ft. I feel like it is a residual from that issue, so make sure to check your oxygen. I have added you to my daily prayer list especially for your two precious girls.
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So sorry you are going through all of this. I’m hopeful you will find the care you are so desperately seeking. I want to encourage you to keep being an advocate for yourself. Even here in the US there are headaches with the healthcare. I’ve switched oncology offices numerous times due to poor office management or medical treatments.
I am not sure what part of CA you are from? But University of Michigan is supposed to have a good cancer center. I just moved to Michigan from FL. In FL I was most impressed with the University of Miami. I’ve heard wonderful things about Anderson in TX… the pastor’s son in FL was diagnosed with brain cancer at a young age and they fly over to Anderson in TX for follow up care (the cancer is in remission).
Thanh you for the follow up response. I responded in the other thread. I only had pain immediately after the histotripsy procedure (1-2 days). I just had a tumor marker blood test and it shows slight presence of tumor DNA circulating, after having a clear test in June. Ugh. I’m hoping the result is only reflecting an uptick due to my hiatus from my cancer medication… I had to take a break because I had to go on an antibiotic for a UTI. We shall see.
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@threetree I don't totally understand. I have gone on antibiotics numerous times (some for UTI) since my dx over 9 years ago and only once been told to stop treatment for it, and that was when I was in the hospital. I have only had two oncologists during this time, each in a different state and system, and neither one suggested I stop my oral treatments.
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i was on antibiotics twice last year, and tbh I didn't even think about calling my MO (maybe should have?). The prescribing doctor knew about my cancer meds, and I did my own online check for... dang it, I just forgot the word - contraindications?… and there were none. I only stopped both meds for a week (per my MO) after my recent ankle surgery. I suppose it would make a difference which meds we're talking about.
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I was on antibiotics twice recently (for diverticulitis) and both times was told to stop Kisqali, not because of drug interaction, but because Kisqali is an immune supressant and would hinder the healing effect of the antibiotic.
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I just wanted to do an update on my liver lesions.
I am dealing with ascites again which absolutely sucks. It's not as bad as last time when I accumulated the fluid quickly and had to be drained. Now it comes and goes. Sometimes I am 6 months pregnant and sometimes I am two months pregnant. Stretchy pants have been in the amazon cart a lot lately. I didn't realize that back in May when I first had it, I also developed an umbilical hernia from the pressure. Last month, I met with a surgeon to determine if it was dangerous and if/what we should do anything about it. He said that repairing the hernia is worse than leaving it due to the scarring that occurs. Either way, having holes in your abdomen and then developing a lot of pressure from the fluid can wreak havoc. Thankfully my hernia is small at this point. I am considering having a permanent drain put in my abdomen instead of just having it drained when needed. I hate feeling like a ticking time belly! I have also cross posted this information on the Enhertu thread as there is not a lot of information here on this topic. And in my case, nor do the doctors offer up any education on this topic besides " it will happen again".
My last scan in August showed that Enhertu had reduced the amount of liver lesions -yay! finally!- but I worry that since the ascites is accumulating again and it's no longer doing its job. I guess I'll find out in November unless something happens before then.
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@dulcea - Dulcea, I am so sorry to hear this. I'm also learning a lot from your post re the hernia, scarring, etc., so thank you for all of the informational things. I think the idea of a permanent drain sounds good, and hope that that or something else works out for you. It sounds like the doctors aren't a real big help. Are there any doctors who specialize in this sort of thing? I'm thinking of you and sending lots of positive vibes your way.
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@threetree Yes! I found a …hepagastroenterologist… or something like that. I will be making an appointment on Monday with them for sure.
Interestingly, my scans and labs are only showing cirrhosis that are not related to cancer and which appeared suddenly with the initial development of ascites. Although they do call it "malignant ascites", I was told that definition is when the fluid contains malignant cells, which mine does not. All the docs were a little confused by that but they have to be related somehow? I hate to get my info from Dr. Google or chatgpt but they have been informative. Glad I could share what I have found out.
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