How are people with liver mets doing?
Comments
-
Gigi - I am so very sorry that you are now in this situation! I don't know exactly what would come next for you, re scans, treatment, etc. I had my last scans in early December and once again they suggest that the lesions on my liver might be slightly larger than they were before. They go back and forth saying they are the same as they've been vs slightly larger. My next scans are due in early March. My oncologist has chosen to watch and wait so far, because of the only slight variations in what the radiologists are seeing. He is preparing me however for what he calls a referral for "liver therapies", beginning with a liver biopsy, depending on what the scans in March show. He has also mentioned the Y-90 possibility depending on what is found. My tumor markers (15-3 and CEA) have been very slowly, but steadily rising over the last 6 mos. They are still within the normal range and not high, but steadily going up. We don't know if that is connected to the liver thing or not. I remain on the Verzenio, fulvestrant, and Zometa; but my onc has raised the possibility of possibly needing to change treatments too, again depending on what the March scans show. It's so frustrating, because while thankfully the pace is very slow, the indications are not good.
I didn't know that you had tested positive for the ESR1 mutation. I did have the MRI to double check what the CT showed re my liver and they used the Eovist contrast. That was last September I think, and that wound up with those radiologists thinking again, that the size of my liver lesions was about the same as it has been for over a year. The CT had shown them slightly larger. December's CT showed them slightly larger again, in contrast to what the MRI had said. It's never ending. I would imagine they will want you to get the MRI, as my onc told me it is the "gold standard" for this sort of thing. I would imagine too, that like in my situation you might be able to watch and wait for awhile, depending on how fast any growth seems to be. I've got my fingers crossed for you big time, Gigi. Please keep us posted with any updates.
0 -
I'm not sure where to post this as the liquid biopsy discussion is not very active and is under "Not diagnosed with Recurrence or Metastases…."
I had the Strata tumor profiling test on a liver biopsy in Aug 2022. Strata is a very comprehesive test and I've had the targeted treaments that were identified. I've had progression four times since the test. The last progression per scan was early this month in the liver.
It's my understanding that tumor biology can change after progression. So after this recent progression I asked my MO for a liquid biopsy test. She responded back asking what the benefit would be. She has offered me a choice of one of three conventional chemos, or there might be a study, or else I'll stop treatment and start hospice.
Communiation with this doctor has been difficult for me at times, however since I'm coming to the end of any treatment options, changing doctors doesn't make much sense. Was I off the mark in my understanding to ask for a liquid biopsy?
1 -
Weninwi-I don't think you were off the mark. Why don't you seek a second opinion, especially if you think that communication is not good with this doc? It's your life at stake.
1 -
Wendy - I'm really sorry about what you are going through right now and want to echo what Chicagoan has said. I think further opinions are definitely in order. Sending a virtual hug too.
0 -
@weninwi , Hi Weninwi, I echo Chicagoan and Threetree that a second opinion is in order.
1 -
Wendy, Per my DD who works at MSK and tracked down liquid biopsy info for me, Dr. Pedram Rezavi is a research/treating MO there who studies liquid biopsies and MBC. MSK does remote second opinions but I don't know whether you can request a specific doctor. There are many potential uses for this but the field is still in the developmental stage so finding someone with expertise takes a bit of searching. I hope you find someone.
2 -
Hello, I have been little bit active in the bone mets thread but I think I will be on liver thread now too 😏… i was diagnosed with bone mets in Feb 2024 and I just had CT and Bone scan as my tumor markers are going up, like really up (Feb 2024 79, July 2024 44, Nov 2024 164, Dec 2024 178)… and my oncologists is saying it’s most likely medication reaction, no need for concern. CT scan shows healing and Bone scan shows progression and I don’t know what to believe and what to go with. My oncologists is saying he is putting more weight on CT scan and not making any changes to my medications and we just did US on the liver as CT picked up something but they are not suspecting anything worrisome, so US is suspecting Mets on the liver and I am absolutely freaked out. I don’t know what to expect, what will doctor suggest.
What are some of the start treatment for liver, is operation an option or radiation? I am currently on 400mg ribociclib, falsodex injections and xgeva injection. Is there specific medication for liver? And what is typical behaviour on liver Mets? Is anyone experiencing any other symptoms or just scans are giving indications on what is going on? Is there a blood work that can be monitored? I am currently doing monthly blood work, just a standard one but not sure if there might be something more specific for liver? With bones we feel pain and kind of suspect what is happening but not sure how liver is reacting? Any tips, suggestions on treatment, medication on what might have helped would be appreciated 🙏
I will try and go through some of the posts but there is so many 😔0 -
vlk2ri- First, you don't know yet if the liver is now involved. Find out the US results first. See what your doctor says. Then, if something is suspected they would probably do a biopsy to verify that the area in the liver is indeed cancer- there can be non-cancerous things seen on the liver too. So you are not there yet.
But, if it is metastasis to the liver, maybe they can just change your meds around. Or they may suggest a procedure- surgery or ablation. But you need more information. Biopsy results to see possible mutations, to see what med might be good to treat it with. And where the tumor is located in the liver to see if surgery or ablation is an option.
I started on Ibrance (a sister to ribociclib) with my liver mets. Then we changed me to Lynparza after the Ibrance stopped working. I was found to have the BRCA mutation on my liver biopsy so it opened up the possibility of using Lynparza. I have never had surgery, ablation, or radiation. Just the oral meds. I did not have any symptoms of the liver being involved. They do "standard" blood tests on me too- to monitor the liver enzymes. Those can be seen on the standard blood work.
So breathe. And I hope I helped some.
1 -
Hi @candy-678,
Thank you for your message! Ultrasound is suspecting Mets to the liver and I just got phone call this morning and my doctor is sending me to do MRI on Friday. Hopefully that gives us some additional info.
I’ve been asking my doctor to switch up meds in case ribociclib is not working anymore which I am suspecting as my TM are high and we see staff on the liver and new sites on the hip.
I am also open for radiation and for liver surgery but he’s been just tossing the chemo into the game. I am not opposed to chemo but I am wondering if switching meds and radiation and surgery could be helpful as well ???
I am not sure what some other people might have done if in similar situation… any tip/ suggestions is appreciated0 -
@vik2ri My liver was riddled with small liver metastases in October last year. I had no symptoms, only the liver tests showed a significant increase. I therefore had an MRI. I was on Ibrance which clearly no longer worked. My onco asked that I start chemotherapy immediately (Taxol, Carboplatin). 6 months later my metas had disappeared. I made a big deal about the chemo but in the end it was very manageable.
This is only my experience. Depending on the type of tumor, other options are possible such as radiotherapy, surgery, etc.0 -
I follow a "Science Communicator" on facebook called Hashem Al-Ghaili (fascinating!). His website wouldn't cooperate but if you are on facebook, look him up as he explains things in laymen terms. He recently posted about liver "histotripsy". I'm not sure it is ready for breast cancer in the liver or what the requirements are, but here is the website to the FDA approved treatment for cancer in the liver:
It is fascinating stuff and I just wanted to add this for hope for the future.
I'm not sure if there is a better thread to post this on but I figured I'd start here.
1 -
Hi all. Some of you may recognize me from other threads but I feel I need to access this thread now too. I have had liver and bone mets since my first dx in May 2016. After almost nine years and four different treatments, the liver mets are becoming more pronounced and according to a recent MRI are starting to grow. @threetree Last Thursday I had a liver biopsy and I am still waiting the results. They ended up trying three different pokes and ended up going through the ribs, but they got it. I was sedated for all of it so I don't remember it at all, but came to quickly and was sent home after three hours. My pain recovery was manageable except for some residual neck pain which is now gone. I am still a little weak, but that was happening before the biopsy. I remember driving myself home after my initial biopsy taken under my arm nine years ago, so things vary.
@soldanella Thank you for your post. I know I will be facing a med change and will probably end up with IV chemo which will be a first for me as I have been on oral meds only for almost nine years now. I have been a little anxious about it, but your post of having your liver mets resolve after six months and chemo being manageable gives me some peace.
1 -
I posted this same thing on Mel's thread yesterday, but thought maybe I'd post it here too. Over time, I seem to keep getting more "drawn into" this thread, unfortunately. Going to see the onc in a little later this morning, and just hope he can find something "not so bad" in all of this.
Got my scan results back and by my reading, everything is stable except for some ongoing liver issues. Over the last year, they keep seeing lesions on my liver that are supposedly increasing in size and number, but very, very slowly. At first they didn't even call them metastases, now they do. This was another one where they said the liver spots were "stable to slightly increased in size". I see the oncologist tomorrow, and I'll just have to see what he has to say about all of this. He has been talking things like liver biopsy and even Y90, but has so far put it all off, due to the extremely slow pace of what seems like progression. I've also been in no hurry to get a biopsy or have any sort of liver procedures. The thought terrifies me. Not sure why everything else stays stable, but this liver stuff seems to ever so slightly increase every 3 months with the scans.
1 -
@threetree I responded to you on Mel's thread, but wanted to let you know I read here too. The biopsy was a good thing for me as it identified a specific mutation that pointed to a new drug that works on liver mets and doesn't require Faslodex shots. We shall see how I do!
0 -
Threetree- I had slow progression in 2021- moved from 4 years of Ibrance to Lynparza. But, I wanted to say that it too was slow. I had millimeters of growth on the scans for I think 3 scans. My MO did not want to change from Ibrance too soon, so she said she was just "monitoring" the growth. After I think the 3rd scan and still small growth of the tumors she said "Yep, progression" and we did a biopsy and then changed from Ibrance to Lynparza.
I am glad my only progression thus far was slow. I pray that is how it works with me. Not BAM with large growth in the future.
0 -
@threetree - I have had two liver biopsies. The first one resulted in my de novo MBC dx. It wasn't bad, but I did have a little unexpected pain ‐ I think from the IR being a little overzealous with the surgical foam. Once they got pain meds onboard, it was an easy day. My second biopsy showed no actual progression and the hardest part about it was the latex-free bandaid they used to cover the tiny incision irritated my skin. I was awake for the first one, and fell asleep after twilight sedation for the second one. You have to stay and lay still for an hour, or so, after the biopsy to make sure there is no bleeding, but then you can go home and the recovery is easy.
1 -
@threetree are they really metastasis? Can they be something else, like hemangiomas, adenomas? I mean… so many people have those, so biopsy must be done to check them, otherwise decisions make no sense:/ The sooner the better, so that right decisions could be made. There's a perfect story of a woman after EBC, whose scans one day turned full of small tumors that were increasing, biopsy was not made, and she was treated for several years for MBC… all chemo-therapies were used, she was completely over-treated, felt a mess, and tumors kept slowly growing… until someone "smarter" decided to do a biopsy which turned out to show some benign condition. Crazy right? Hmm… Hugs, Saulius
0 -
Intolight - Thanks again for your input; it's always really appreciated. My onc would love it if I would consent to a biopsy right now, just for the kind of reasons you are saying yours was a good thing. He says it would really help him sort out just how to go about treating all of this. We also discussed how Faslodex may soon be in pill form. He says the latest on that is that it's looking really, really good research wise, but just needs a bit more validation before it can be the "new thing". He said it will be a "huge" thing for breast cancer if and when it does become a pill. At least you've got a way to escape those needles early!
Candy - Good to hear that you got 4 years on Ibrance. In April/May, I will have had 2 years of Faslodex/Verzenio. I'd love to get 4 before anything even looked like it was progressing. This liver thing has been over the course of the last year; just teeny-tiny, but steady, increases. Everything else remains stable The onc has just been monitoring and seems to think we can continue to do that for yet another 3 months and see what the next set of scans show. He does seem to think it's progression, but can't really decide anything more about it without a biopsy, and so far I'm still holding out on that. He thinks it's possible that the HER status of the possible liver metastases is a little different than the rest of my cancer. I really hope you get a long, long time on the Lynparza; that's one I don't know much about.
Seeq - Once again, thanks so much for your comments. I can't imagine one liver biopsy much less two! I did see an IR at my facility once, but that was for the bone biopsy. I asked the onc yesterday if I could possibly see her again for a consultation he wants me to have, but he told me she no longer works there (darn!). She was really nice and I would have trusted her right off the bat. Sorry to hear about that band aid being so troublesome for you. I've been real surprised at how bad some of those adhesives can be - even like you say, on a really small bandage. I appreciate the info on how your liver biopsy went, because I am really, really wary and scared of getting anything like that done, even though I realize it would help the onc so much. He says there's really no other way to get the information he needs to consider how to treat this problem.
bsandra - Saulius, I so love your "thinking outside the box" about how maybe this isn't even metastases at all! I've had similar questions myself. Early on, the radiologists were just calling these areas things like "hypodense lesions," "likely hemangioma," and "possible cyst", etc. A few months ago though, they all started calling them "metastases" saying that they could see them "more prominently" now. Like the onc says though, and as you are suggesting, they really need to see biopsy results to know for sure. I can't believe the story that you told about the over treated woman with the benign condition. How could they have never done the biopsy first? That poor woman! I think I'm going to just have to bite the bullet and get that biopsy done, but the onc does think that nothing is urgent. He says he wants me to consult with an IR, which I said I would gladly do, since it's just a consultation. He said that way we can build a plan where we would be "locked and loaded" and ready to go, if and when something worse does become apparent. Also, continue to be amazed at just how well your wife has done overall with this stuff, and my heart goes out to both of you over your young ages. Thanks so much, and hugs back!
1 -
@threetree - have you considered a liquid/blood biopsy in the interim? I wouldn't expect it to give the same detail as a tumor biopsy, but it could be a starting place. My new MO wanted to do one earlier, so he'd have a plan without having to wait for a tumor biopsy lab results in case of progression. Why that didn't happen is a different story. I know when I show progression, I'll have another biopsy, and it doesn't worry me.
0 -
@threetree Thanks so much for your best wishes!:> @seeq has a point - liquid biopsy could show something, or an experienced ultrasound specialist could evaluate these lesions. Please, keep us posted and hugs back again:) A forever-optimist-but-not-detached-from-reality-Saulius
1 -
Seeq and BSandra - Interesting about the liquid biopsy idea. In the middle of my discussion with the onc, I asked that question myself, i.e. I told him I'd been hearing more and more about liquid biopsies and asked if it would be possible that one of those would give him the information he needs to formulate any further treatment plans. He said no. He seems to be particularly focused on the possibility that the HER status of what's in the liver could be slightly different from that of the rest of the cancer, and that that might be causing the "problem" if you will. He thinks the Verzenio and Faslodex are working and doesn't want to change anything, but at the same time the liver thing is confounding. I sure appreciate all of the info and ideas that the rest of you take time to generate and offer, because many heads are definitely better than one, and I've brought things up with the doctors before, that other people have experienced or suggested, and it can be a big help in many situations. Your support and assistance is so appreciated, and I will keep you posted. Maybe I should discuss the liquid biopsy possibility with the IR when I have that consultation?
0 -
@threetree - I wonder if local treatment (e.g. SBRT) would be a consideration, since they tumors are small. It would not provide answers about why they're growing, but they'd be gone, at least for now. Your IR is probably a good one to ask. (Without going back to look) I'm thinking your MO mentioned y90 or other local treatment? If so, I'd think he would be open to the idea.
0 -
Seeq - The onc told me about Y90, something relatively new and only done at certain locations, called hystotripsy (I think) that uses sound waves, and then something else that I can't remember the exact name (maybe it was some kind of radiation). I think it was some kind of ablation. He said the Y90 and the one I can't remember are done with conscious sedation and that the histotripsy is done under full anesthesia. I think he needs more info before he can even decide if or which any of those treatments might be appropriate. For that reason, I agree with you that the consultation with the IR would be worthwhile. I think these treatments are more in their line of expertise than it is for the oncologists. I'm still on that issue too of whether it really is cancer progression or not that they are seeing. I remember that when I was first diagnosed with stage 3 in 2018, the only things they saw on my liver were a cyst (that they still see) and they said I had fatty liver disease. Well since then, I've lost weight, changed my diet, and I exercise more, and no one has mentioned the fatty liver again. I'm even wondering if the fatty liver deposits could have possibly broken up into little pieces and maybe that's what they're seeing. I wish I had thought to ask the onc about that too. Not really knowing anything about medicine though, I sometimes feel silly and like I overthink this stuff too much, and that it might just be a waste of time. On the other hand, I feel like I owe it to myself to explore and bring up any possibilities, no matter how far fetched they might sound.
0 -
@threetree , really, for me, the liver biopsy was a piece of cake. It sounds scary but it’s easier than it sounds.
1 -
Aj - Thank you so much! I know that you and a couple of others told me previously that your liver biopsies weren't too bad, but then I also read about the extra hard time that Intolight had. I also remember a story about a co-worker that my once-upon-a-time husband had, who had an excruciating time with a liver biopsy. Biopsies of any kind scare the heck out of me. I will try to remember yours and others' more positive experiences. My onc told me that these stories of difficulty are the exceptions and not the rule. I had a fairly good bone biopsy experience with an IR at my clinic and I asked the onc about the possibility of her doing the procedure, if I cave and get it, but he told me she isn't here anymore. That put me off some more too, because I think I could have been relatively comfortable with her. When you get a complete stranger for some of these procedures, that in itself adds a lot to the stress level. I'm just so glad that your procedure went well, and that you have continued to chug along well with the Xeloda. That's a really good thing!
1 -
threetree Hi there. I am just waiting to start Xeloda now. I have had some progression in the bones, but there was some activity in the liver on my last scan. My doctor didn’t mention the liver lighting up. I have had mention of fatty liver in past scans, and then clear in others. I am currently starting radiation therapy on my left femur. I won’t start the Xeloda until after that. I am having 10 sessions and a little nervous to be on no meds. My markers are climbing! Are you now on Zometa, Faslodex and Zometa at this point? How are you tolerating that combination? Hello to everyone else. I think there may be a liver biopsy in my future nd it has been reassuring reading your experiences with that. Happy spring to those in the warmer climes. I am in Florida in the winter getting care at a top notch cancer center. In the summer I live in Minnesota. I have a good cancer center there also, but not world renown.
0 -
Hi Gigil - Long time no "see". Sorry to see that you've had some progression, but at least it sounds like it's fairly slow, and that's a good thing. I sure hope the Xeloda offers what you need. I've seen where people here stay on that for a long time, and I've often thought it could be in my future too. Best of luck with the radiation too. My onc says that sort of spot treatment can be very effective. Yes, I'm on Verzenio, Faslodex, and Zometa now. It's been almost 2 years for the Verzenio and Faslodex, and almost 1.5 years re the Zometa. So far, so good basically. It makes me tired and achy, and rather blah feeling, but it's tolerable. My onc just described my situation as "stable" yesterday, so that was encouraging. Interesting that you too had some fatty liver showing, and then not. A google search I did does say that in some cases fatty liver and metastases can be confused and that a liver biopsy is the "gold standard" for getting at the truth if there is any confusion. I just dread the thought, even if the results would be enlightening. I'm a big baby and needles and knives just scare the heck out of me. I can understand your nervousness for sure, with the rising tumor markers. Hopefully they will calm down again once you get on the Xeloda. I'm in a cooler clime, but I say happy spring too! I'm in the opposite corner of the country from Florida, but our birds and flowers are gearing up and starting to go gangbusters. So nice to know that spring is just around the corner.
2 -
Happy St. Urho’s Day! It was created by a northern Minnesota department store employee in the late 1950s. Enduring cabin fever during a long winter, a Finn became jealous of the Irish having St. Patrick’s accomplishments to celebrate.
According to legend, a blond man chased the grasshoppers out of his country using a pitchfork. The insects were supposedly destroying the grape crop. Look it up online for a little laugh. Meanwhile, my liver mets remain stable with a good lab report last week.
We are taking a car trip to see my father & sister at the end of the month. Our son will join us so it should be a nice visit. Side effects on Trodelvy are minimal due to the extensive pre- and post-drug regimen. I hold ice water in my mouth during the infusion.
2 -
Threetree, good to hear from you. I first had fatty liver show up on a CT scan with contrast when I was taking Lexapro. When I switched to Ibrance and Faslodex it disappeared. When I was scanned 7 months into Orserdu it lit up in diffuse areas on my liver. My Oncologist didn’t even mention it when deciding to change my med. she was more concerned that my already high CA15-3 was sitting at about the same spot and there was some progression in the bones.
My liver enzymes have been perfect and my Alk-Phos. This last time one liver value was slightly elevated. She thought it might be my more frequent use of Tylenol. I have developed a limp from the left mid-thigh, which causes compensation pain in my right lower back, hence the Tylenol. I am reading up on the Xeloda. I sure wish we had ananother option after Orserdu to deal with the ESR1 mutation. I am not impressed with that med, in my own case and reading others’ experiences.
vinrph I am very familiar with St. Urho. In the summer I live in NW Minnesota. I have driven past a huge statue of him in Menagha, MN. I always get a kick out of it. I have meant to stop and take a picture. There is a large Finnish population around there. Beautiful country. I can’t wait to get back there in April.
We are watching The Quiet Man for a movie today and making Irish stew. Tomorrow family arrives for a visit and I expect we will be busy. Wednesday I do my radiology simulation. I am to have ten sessions. I was expecting 1-3! My radiology oncologist believes at my age (75) low and slow gives the best outcomes. Happy early St. Party’s Day everyone. I am a lot Irish, although I look more like my half-breed Native father.
1
