How are people with liver mets doing?

@dulcea, Have you been checked for drug induced liver injury? It’s rare but I ended up with sudden cirrhosis not related to cancer or anything else caused by a statin. There is a long list of drugs that can cause DILI and Enhertu is one of them. It puzzled four other specialists for eight months before it was diagnosed by a gastroenterology fellow specializing in hepatology who monitors my Barrett’s esophagus. Stopping the offending drug and taking steroids has helped. Your problem could be something else but it wouldn’t hurt to ask. Good luck finding the cause.

NOw I am just thinking out loud here… For my last Enhertu treatment, I asked my MO to stop the p.m. post-treatment steroids due to insomnia and constipation. She agreed. Now I am wondering if the steroids were protecting my liver from any treatment inflammation and the ascites was the result. I only had a scan 40 days ago and there was no ascites (which was noted by the radiologist), so this went from zero to 100 in a short amount of time.

Maggie, thank you so much for the info you shared. It’s valuable, knowledge is power, especially when the healthcare team sometimes misdiagnoses us. I’ll dig into those symptoms since I have some of them.

Dulcea, thank you for opening this discussion. we learn so much from each other here, information we rarely get from our care teams.

Threetree, have you decided what treatment you prefer for your liver mets?

@snow-drop - Hi and thanks for asking about my issue. No, I haven't decided what to do yet. I had that biopsy in late July and I just had new scans a week or so ago. There's no new activity with my liver mets and things are fairly stable right now. The oncologist has been trying to get together with me to discuss the scans and the liver issue, but the schedulers, for some reason, keep messing up the appointment times. I told them 2 days this week that I can't do an appointment and wouldn't you know, they made the appointment for one of those days, and then when I told them I couldn't do that day, and had mentioned it to them previously, they scheduled me for the 2nd day that I had said I was unavailable! That's today. I did get a message from the onc this morning saying he wants to discuss the scans and is of the belief that we have an appointment scheduled later this week. If we do, I don't know about it.

Anyway, I don't know if he'll want me to get some sort of liver treatment asap or if he will just continue to hold steady a while longer, since things are stable. I also want to have the formal conversation with the histotripsy doctor at the other hospital too, now that I have much more complete and updated information. The onc and the IR here at my regular hospital seem to be leaning towards Y-90. I just don't know how this will go yet. All I know is that all of the options available sound overwhelming, tiring and requiring notable recovery time, painful, and short term, i.e. not curative.

Threetree- I hope you have a good appointment. And I understand you wanting to have a consultation with the histotripsy doctor, as more knowledge is power. But I too have hesitated in having "procedures" done- Y90, ablation, etc (there was not histotripsy back then). In my cancer journey I have had MO's that wanted me to consider such procedures. And I have read of others on here that have had procedures done (and to each her own). I have not done them, as I too thought they may buy me some more time, but they are not curative. And they sound painful, with a couple of weeks recovery, and I do not have a good support system to help me during recovery. So I have just done the meds. And, so far, I am 8 years into MBC with liver and bone involvement and stable on the meds. I may have to reconsider procedures at some point, but as long as I am stable, I will continue the treatment with meds.

Threetree- Someone told me once, but I don't remember the situation we were discussing at the time, "just because you can do something doesn't mean you should do it". But I think of that quote when thinking about procedures like we are talking about. They did not have histotripsy when I was thinking about liver procedures, and maybe for some it is a God-send and really helps them, but just because it is something new they are doing doesn't mean it is right for all.

Keep us informed of what your doctor says and what you decide.

I have not posted here in a while. My last scans (in July) were stable still. "Celebrated" my 8-year mark with MBC, and on 2nd line of therapy and stable on that med for almost 4 years now. But something has come up I want to ask the group about……

Cross posting from another thread to reach more people….

Hey guys, I have a premature question for the group:

So, my PCP always wants a mammogram yearly still (on the remaining breast, as I had a mastectomy). My MO says no need to do a mammogram anymore. So some years since MBC I have done the mammogram, others years not. Last year I did, and I went last week for this years. The results showed up on the portal, I have not heard from my PCP yet. Shows a suspicious something something at almost 2cm. Recommends ultrasound follow up.

So my question—- could I have another cancer in the other breast while on Lynparza and Lupron? Could it be a progression of sorts? Or instead of hormone positive, it is triple negative? Or went a different pathway from BRCA or hormone pathways?

Just wondering your thoughts. Maybe it is a cyst or collection of benign tissues. I should hear from my PCP this next week on next steps- ultrasound should be next.

@candy-678- Congratulations on 8 years, that's awesome!!!

And I suppose if the ultrasound indicates any problem they will do a biopsy, but damn these scans, it seems they always just give us something new to freak out about, hopefully you hear from your MO soon…

@seeq - I'm sending a belated response and thank you for your previously asking about how my appointment had gone last month. (I've just been so, so tired that it's been hard for me to keep up with others posts, plus I don't have the energy to do much posting about my own situation either.) My appointment went OK and he told me that my options would be to continue with the Verzenio/Fulvestrant and get local treatment for the liver mets, or to try switching to something like Truqap or possibly Enhertu (I don't want to do that). Truqap is apparently the drug of choice for the AKT1 mutation that they found in my liver mets. It doesn't look like a "good" mutation at all, as it apparently makes the cancer cells more aggressive. I haven't read where anyone has done especially well on Truqap however, not at all as well as people seem to do with the CDK4/6 drugs and an AI. The oncologist did say that the pace of growth is very slow and that that is a "good" thing and gives us more time to make plans. My scans in September showed relative stability, so we decided to continue to watch and wait and see what the December scans show. In the meantime we will watch monthly tumor markers and I will consult with other doctors re the local treatment options.

As of now, I am going to see a liver surgeon at my main clinic/hospital in early November to discuss the situation and local treatment possibilities. (So far the onc and IR have been seeming to lean toward Y-90.) It's my understanding that the liver surgeon would be required or involved in other types of treatment like thermal ablation and more. I just don't really understand it all, so am glad to be getting this consultation. Then in late November I will be getting a consultation at another local hospital that does the histotripsy treatment. I'm hoping that with all these consultations I will be able to weigh all the options and make a wise choice about what to do. The problem is that with this liver mets development all of the options just put me one or more steps further down that road none of us want to take, and I just can't seem to get past that. I just wish I could keep chugging along with the CDK4/6 and fulvestrant for several more years - it does look like some manage that, although obviously most don't. I'm just so burnt out from all of this.

@seeq - Hi, and thanks for your comments. They are always interesting and helpful. Yes, I did have a biopsy at the end of July and that's where the mutation was discovered. It took a month though for some of the results to show up and now I'm not sure if the mutation result came in early or late, but whatever (I could check MyChart, but too lazy.) Anyway, as you say it looks like I have a lot of options right now, but it's so overwhelming trying to sort them all out and make a decision. One and done would be wonderful, but from what I've read, that doesn't seem to be the way it usually goes. My understanding is that any of these options maybe kick things back for awhile, but that invariably the same tumors (and more) begin to grow again, so all you really get for a lot of pain and more is maybe some time. I think I read that the one year survival statistic for those who get Y-90 is only something like 46%. My onc told me that that's actually a good statistic! I think it might be because so many with liver mets have lots of mets elsewhere too. I also have mets to some of my bones only but it's relatively stable, so maybe that's a plus, since it isn't all over? I understand that histotripsy survival statistics are similar to those of the other treatments. So far, I'm just not seeing where all of this is particularly great. The histotripsy NP told me that the best they could do for me, after looking at my scans would be to "debulk", but not cure. I'll have to wait and see what their surgeon says. Have your liver mets remained under control with just the drugs? That's wonderful if that's the case and I hope that keeps going for you for a long, long time.

Anyone in trials for liver mets with multiple mutations? Looking for guidance and hope. Almost 2 yrs in, nothing has worked or had the efficacy it is supposed to for me.

I'm supposed to have a consultation with an oncological liver tumor surgeon later this morning, but not sure I'll make it, due to worsening digestive problems ( partial bowel blockage?). He's supposed to talk to me about the different treatments and possibilities. I've had this appointment for awhile now and really want to make it. A friend will drive me, so that's a big help.

I have been hoping to share what I learned after my consultations with 2 different oncological liver surgeons in November, but I have been so fatigued and brain foggy, that I haven't been able to. Part of my problem was apparently an electrolyte imbalance, and that seems to have improved some, so I'm going to give this summary of what I learned at these consultations a shot.

I saw the first surgeon at my "home clinic/hospital". He is head of a "Liver Tumor Clinic" there. I was there to discuss possible treatment options for the mets I've developed over the last year or so. Radiologists who've looked at my scans have only ever noted about 3 lesions and they have remained relatively stable over time. To my great surprise and dismay however, this surgeon told me that he and the resident he had with him, had counted at least 10 lesions that they could see on the scans. He said that that also most certainly means there are more that will just keep coming. He said that he could ablate every single one of them, but that they would either just grow back and/or, I will develop more. He said in this situation no kind of surgery or re-section is possible or will do any good. He said that the interventional radiologist I had seen re the biopsy and possible Y-90 treatment could also likely temporarily obliterate some of all of the lesions but that it would likely be pointless, due to the almost certain likelihood that they will grow back and in greater numbers. He told me a very interesting thing about breast cancer and liver mets that I think would be of interest to anyone here with liver mets. He said that breast cancer mets to the liver are very unique in that most any "liver directed therapy", e.g. Y-90, thermal ablation, etc. will offer extremely limited to no benefit, and he told me that before I decided on any of these treatments I should know that given the pain and uncomfortableness involved with all of them, the time spent in the hospital, and the time spent recovering there would be essentially no benefit, and I might just rather stick with the drugs and not do any of these localized liver treatments. He said that those at his clinic deal with a number of cancers that often spread to the liver - particularly colon cancer, and that all of those other cancers show statistical benefit to the recipients, and sometimes remarkable improvements. He said that breast cancer is the only one of these cancers that spreads to the liver that does not seem to get any benefit from these liver specific therapies. He said that overall survival statistics do not show any benefit to those with liver mets from breast cancer. He did note of course that he was citing collective statistics and that as we all know, know one knows just what will happen with any one individual, however, it is usually of no benefit whatsoever to a breast cancer patient and to the contrary can put them through a lot unnecessary misery. I asked him about the possibility that some patients could be those "outliers" that defy the statistics and that they might get a good run for awhile after the surgery. He gave me the "Yes, but no one has a crystal ball" argument saying that again, for what you have to endure with the treatments and hospital stay, you should really, really think hard, before going for any of those treatments. Needless to say, I was very disappointed, but thought I would hold out for the second surgeon who I was primarily going to see to discuss the possibility of histotripsy (only done at another local hospital).

I reported back to my oncologist at our next visit and he seemed a bit surprised and dismayed, as he had really been thinking we could do some sort of "liver directed therapy" and gain some kind of benefit before things got really out of hand.

I saw the second surgeon in late November, at the local hospital here that does histotripsy. He went over all of the different kinds of possible "liver directed therapies" also, and then spoke a bit more about histotripsy. He had really studied my history and recent scans and I was really impressed with how informed he was about my situation. He too said he had counted about 10 lesions; again far more than any of the radiologists interpreting the scans had ever mentioned. I told him how my consultation with the other surgeon had gone and he said that he knew the other surgeon and given what I was saying I'd been told by him, that he agreed re the lack of benefit that would likely be there if I chose to do any of the standard localized liver treatments like Y-90 and thermal ablation. He said that histotripsy might be something to explore a little more, but that it would never be a curative thing for me and at best would only provide extremely limited and short term benefit. He added that to do histotripsy it was essential that the lesions show up on an ultra sound, and that if they didn't, they could not do the procedure. He said that some lesions develop the same density as the liver itself and then cannot be seen on ultrasound, thereby killing any possibility of doing any histotripsy procedure. The main reason I was there was to see if I would be a good candidate for histotripsy. Before I left, he wanted to do an ultrasound to see if he could see the lesions. Well, he did the ultrasound and they could not see the lesions at all. He seemed to anticipate this ahead of time. Then I remembered that when I had the liver biopsy at the end of July, the IR started with the ultra sound, intending it to be an ultra sound guided procedure. They poked around my liver with the ultrasound probe a bit and then I remember the interventional radiologist telling the techs to move me to the CT machine, and that is how they ultimately did the biopsy, i.e as a CT guided procedure. Now I'm pretty sure that the IR ran into the same issue where the lesions on my liver didn't show on ultra sound. The final decision was that I would not be a good candidate for histotripsy due to this ultra sound issue, and this second surgeon re-iterated what the first one had said about there being very questionable if any benefit for me with any of these "liver directed therapies". He said he agreed with the first surgeon about all of that, but that he also totally understood my oncologist thinking that some kind of local treatment could be possible, beneficial, and wanting very much to do something before things got crazy and out of hand.

Second report back to my oncologist and again, he seemed very disappointed in what the liver surgeons had had to say about the possibilities of my getting any benefit from these liver directed therapies. I asked him then too, what about the person who's ablated lesions grow back in 2 months vs. the one whose lesions might not grow back for 2 years. I told him I was sure that someone's would hold out for the 2 years and that for that person, the hassle with the procedures just might be worth it, and how was I to know what to do, when I might or might not be one whose lesions didn't grow back for a long time. He said that given what both surgeons had said, he thought I had received my answer and that as the surgeons said, "no one has the crystal ball" so there is simply no way to know if any given person might be an outlier who truly did wind up benefitting. All they could refer to were the collective statistics that were not good for breast cancer metastases to the liver. My oncologist is now continuing to talk about me staying on the Verzenio and fulvestrant as long as possible, and then when these are no long good (some signs seem to be showing) I will pretty much be left with Truqap and Xeloda as my more "final" possibilities.

I'm sincerely hoping that although this is a very long post and it's obviously about my personal situation, that there is still a lot of general information about breast cancer and liver mets here that I obtained that would be helpful and useful to most anyone on this thread.

Three tree, thanks for the info although it is discouraging to hear. Xeloda was my first treatment and after two months I was so dizzy it was discontinued. Pharmacy said it’s a side effect for 4% of patients. I’m currently on Doxil.

@threetree My oncologist always takes my case to her tumor board when there is progression, so when we talk I know it is more than just her opinion. I figure it is like getting a second opinion. I know she stays up on all the research too, so I trust her but I still ask questions and require justification. She has never brought up Y90 or any local treatment for my liver although we did look into radiation on my spine. I have had liver mets spread throughout since dx in 2016 and that has never changed. I am a little anxious about our meeting Friday as I have no idea what her next suggestion will be. She knows that QOL is very important to me. She once told me that she would never suggest anything that would send me to a residential care facility.