How are people with liver mets doing?

@threetree - congratulations on getting through the biopsy! If I had been stuck in traffic as you were, my anxiety would have been off the charts.

Last month, I spent nearly 2 weeks in the hospital, discharged with a pair of nephrostomy tubes and bags which collect urine. The disease had progressed to peritoneal carcinomatosis. My ureters were being compressed by the tumor which impaired the kidneys’ ability to function.

I’m not pursuing further treatment and will soon be thinking about hospice. My oncologist gave me a 3-6 month prognosis so I need to begin wrapping things up. Otherwise my husband would have too much to handle. Trouble is, I’m already very low on energy…

@vlnrph - Thank you very much for the congratulations re my liver biopsy. It was indeed an ordeal, and not results as of yet.

I want to send some real warm hugs and my sympathies regarding your current situation. I'm very sorry to read about what has been happening! Two weeks in the hospital and now nothing but continued troubles (understatement, I know). NOT FAIR! Please know that I am thinking of you and wishing you all the best as you navigate these next steps.

@Intolight - Fingers crossed and in your pocket for your scans tomorrow! I'm glad that Orserdu seems to be working for you - it's one I haven't seen a lot about yet, and I am really pulling for you. Glad to hear that it's an easier pill to take too - such an important piece to all of this. Sending a hug too!

@threetree I was diagnosed with bone and liver mets 9 1/2 years ago. My liver mets continue to hang aground although we have been able to keep them somewhat controlled since then, but they have never gone away. So it is possible to live a long time with them. Currently, I am on Orserdu (pill) for them because they found a specific mutation in my biopsy. Do they list any mutations? For my report there was a long paragraph listing possible mutations which I only had one come back positive. It was in a big paragraph. The med I am on is actually the easiest one I have been on in all these years. And Orserdu does not need an AI so no more shots too. I get scanned tomorrow to see if it is actually working. Good luck!

@intolight Wow!!! 9 years, what a reassuring message. I developed liver metastases in addition to the bones in 2023. My liver was invaded by very small ones, impossible to operate. I had 6 months of chemo which cleared the liver then targeted therapy for 6 months which I resisted and my liver values were rising again. Under Xeloda for 6 months the last scan did not show any recurrence of the disease and I am keeping my fingers crossed that this will continue for a long time.
Thank you for your encouraging message.

@soldanella - Thank you so much for your good wishes. You're not kidding about how "doubt and waiting always steal a lot of energy". I have been so tired and so mentally down since that biopsy. I didn't even need to wait for the results. Just the procedure itself has had me exhausted for the last week. We have had some more humid weather than normal, and some wildfire smoke, so some of that could be contributing also, but I think the big part of my current physical and mental down is due to that biopsy and now the results.

Soldanella, it looks like your cancer metastasized to your bones, lungs, and liver (!) in 2023 (I can read a tiny bit of French😉), so it looks like you've been doing well for awhile now, given all that has happened - almost 2 years since the progression; good for you! Mine went to my bones in January of 2023 and they started seeing tiny lesions on my liver that they couldn't characterize in early 2024. Just last fall and winter though, they started calling them metastases, because they said they could "see them better" even though they've stayed pretty much the same size. I want to wish you all the best of luck for the future too - we both need to keep our fingers crossed. Life can just be so cruel sometimes. I often wonder how the same life that can be so beautiful and joyful can also be so cruel and seemingly evil. Two sides to every coin, I guess.

@soldanella - You are very welcome for the words, and I appreciate yours very much too. Yes, about 2.5 years now of a whole new world, so to speak. You have indeed showed resistance and resilience through all of what you have endured, and that is not easy nor always possible. Thank you for the positive vibes, and I send some right back to you. I will be seeing a nurse practitioner tomorrow at a second appointment after my Faslodex shots. I don't know if she will have much that she can offer in the way or help or not. I think she might be substituting for my oncologist, but I also see her routinely too, so I'm not sure, but am hoping it will be helpful either way. While I can definitely take the good days as a gift, I find it real hard to turn that blind eye to the opposite ones, as you suggest. Maybe you've got a good handle on that for yourself?

@intolight 9 years! I had no idea! That is amazing and it does give us hope.

@threetree I am glad to see that you are past the biopsy part. The waiting is always that hardest part. I hope you get some “good” news on mutations.

I am another 2023 stave IV girl but I dont seem to be able to get past the three month scans. Every time I have a scan, I end up on a new treatment. Once on Verzenio, I had almost 100% cleaning but then the next scan showed a different story. I also had to change from PET scans to CT scans (insurance…) and since they really couldn’t compare the two, I stayed on the then current treatment which three months later, showed it wasn’t working. I HATE living three months at a time! If I didnt suffer from anxiety before, I certainly do now.

@soldanella, I need a little bit of your outlook. Thank you for your positive words.

@vlnrph I just read your update and I am sending you hugs and strength.

@AJ - As always, I really appreciate your sympathies and support. Yes, I was really holding out that it wasn't cancer after all. I guess we have to hold out hope as long as possible, and it does happen for some people. The same nurse practitioner I'm seeing later today held that out as a possibility, but I think it was just to try to put me more at ease, so I'd go get the liver biopsy. I'd had 3 or 4 radiologists and the oncologist all saying they were sure it was cancer. Then I mentioned to the nurse practitioner I spoke with at Swedish about histotripsy, about how this NP thought maybe it would turn out benign and she very emphatically said, "Well it's sure not lookin' like that!" None the less, I held out for the possibility that they were all mistaken. Oh well. I'm really glad to know that your liver mets have been stable and I just hope for the same for all of us for a long, long time. May we all have the more positive experience that @intolight continues t experience.

@dulcea - Thank you for your comments, and you are so right about how awful the waiting can be - for biopsy results and from 3 month scans to 3 month scans. It's no way to live, but what are we to do, with no other options? I too think I could use some of Soldanella's ability to see more of the positive and less of the negative.

@soldanella - Wishing both you and @dulcea lots of luck with the Enhertu. My understanding is that it's a virtually brand new drug, showing lots of promise.

I'll be seeing the NP later today and also getting my Faslodex shots. I will try to look for the positives in these afternoon appointments. Hoping the NP can contribute something informative. I hope everyone has as good a day as possible. Hugs to all.

Oh @intolight - so very, very glad to hear about your stable scans! You really are so blessed and serve as an inspiration to so many of us. Keep up the good work, and thanks so much for letting us know.

@intolight Hurray for stable!!

@dulcea - Your very welcome for the good wishes. The NP I saw did not want to "go there" at all re my questions about the biopsy pathology results. She said I would have to wait until I see the oncologist, who is out for most of the month. I'm seeing another NP next week, and she actually "substitutes" for the doctors when they are not available (the other one is basically a palliative care person), plus she has a personality that is a little more conducive to maybe getting some answers to some questions. I click a little better with the one I'm seeing next week, so we'll see. The oncologist has told me that whatever is in my liver is very slow growing at this point and that there's no urgency, so I guess I can wait.

@snow-drop - Thanks so much for this. This is just the kind of information I'm wanting to hear; real life experiences. I have been told that histotripsy doesn't completely "dissolve" tumors in many cases; especially when there are multiple tumors. It's also been my understanding that even if some are completely resolved, its' quite common with breast cancer mets to the liver, that more just keep showing up and growing, so all these treatments like ablation, histotripsy, etc. merely knock things back a bit and never really "cure" anything in the liver. It would be interesting to know if in the case you describe, whether the tumor that became enlarged was due to the procedure or if it was just one that didn't respond well and continued to grow. I was told, as you noted, that it's not uncommon for a tumor to be in an area where the sound waves can't penetrate, e.g. behind a rib, so there are things like that to contend with also. The IR told me that. Both the IR and my oncologist seem to lean much more to the old tried and true like Y-90 and various forms of ablation. Like your doctor, they seem a little wary of something this new and experimental, but they haven't just said flat out not to do it or anything. Also, both the histotripsy people and the IR have said that it's possible to get various combinations of all these different treatments to get the best results for any and all liver mets that a person might have. After looking at my scans, the histotripsy people told me that that method won't completely eradicate my mets. They said it could shrink some of them, but would never be "curative", only palliative. They also said that I could get something like Y-90 first, and that then the histotripsy might add something more, but again, it won't be cured. They say the histotripsy is just "one more tool in the tool box", but not any sort of "miracle" type thing. Like you noted, size and location, etc. are a big issue in what works. The IR also said that it might be possible to do something like Y-90 and histotripsy, but we barely touched on that idea, as he wants to wait until my oncologist weighs in some more - which probably won't be until next month, as he is out this month.

I am back after almost 10 years. I am newly diagnosed with liver mets and innumerable bone mets in most bones in my body with a few suspicious lymph nodes in my thoracic region and abdomen thrown in for good measure.

The diagnosis comes as a shock after a routine scan because I have been dealing with heart failure (chemotoxicity from prior treatment) and Graves’ disease.

I am terrified beyond belief. I have switched to Aromasin recently after almost 10 years of Tamoxifen. I will be starting Verzenio and Zometa next week

Any words of wisdom for getting through Verzenio and Zometa? My onc is concerned about Verzenio because I have already lost 40 pound in the past few months.

@ohionana1605 I'm sorry you are having these feelings of uncertainty. Once we get that diagnosis, I think we all wonder if every ache and pain we get is cancer spreading. I have both bone and liver mets. Any liver pain I have had has been on the right/upper abdomen. I did have to have my gallbladder removed in between all of this mess due to 33 gallstones and pain which was more in my middle/upper abdomen and extended into my upper back. I'm not sure if this information is helping you at all but I completely understand your insecurities. Personally, I would believe the MRI/PET as the MRI is what caught the spine cancer for me. You could ask for another radiologist to read the scans for you.

@luckyladyinpa I can't personally speak to zometa but I did take Verzenio for 6 months or so and yes, nausea and diarrhea were the worst part of that. I started at 150 mg but decreased to 100 after a few months and that changed everything! I also found that tums helped with the nausea for some reason. I know that some ladies have started on a lower dose Verzenio and increased their dose as they got used to it but you will have to check the board to see the outcome of that. I hope all goes smoothly for you.