How are people with liver mets doing?

Saulius I know exactly what you mean! :). its all good. I am thinking of messaging the NIH team next week just to see if they have any updates.

Did you check out what NKB said about Enhertu that she said SusanSF had said about taking that for people with HER2low and HER20?? If not and you could I would love to hear your thoughts…I repsonded there as well.

RK2020, you are in my thoughts and prayers.

My wife had another drain of her ascites yesterday. This time there was less fluid. Despite what the oncologist thinks, that it is unrelated to the cancer, I hold out hope that the xeloda will once again do what it did back years ago, and reverse the ascites. The Onc thinks the cancer has nothing to do with it, and that its just the inevitable deterioration of her liver (decompensation). Personally, I think this is a way for the Onc to wash her hands of any problems that seem to be arising from the staying on verzenio too long, after it showed signs it was failing. It doesn't make any sense to me that an event that occurred 6 years ago would take 5 1/2 years to cause ascites, after it previously reversed itself.

No tumor markers last cycle, the lab forgot to perform the tests. Scans coming up soon, so we keep our hopes up it shows things are improving, or at least stable. My wife's liver is so messed up on the scans, its difficult for them to see anything subtle.

Enhurtu eh? (Sounding Canadian with that comment!).

I hope its available to her. We have a weird system in Canada, where access to expensive drugs is somewhat restricted. Manitoba, where we live, they say a patient is entitled to one targeted drug. Hopefully that wasn't used up with the palbo and verzenio, as it was supplied on a compassionate patient basis, and not paid for by the province. It might be worth a shot. I'm hoping the xeloda works for a long time, and then we switch back to some sort of antihormonal. Perhaps alternating the two strategies will revive the dependence on the hormonal pathways.

Dear Nicole, I don't remember in which forum that was but we really had that discussion about Enhertu after Trodelvy and vice versa. As these both have different target receptors (HER2 vs TROP2), the resistance builds up via resistance to the payload. Enhertu and Trodelvy have different payloads but both act similarly (inhibit topoisomerase I). But again, these different payloads have different characteristics (bystander reach, membrane permeability, etc.), and it also may be that some TROP2 expressing cells got resistant but then HER2 expressing cells not and vice versa, so there too could be benefit. Every patient is different but I actually don't see any real arguments not to try one drug after another, especially when resistance is not proved after the biopsy in the lab.

Dear rk2020, I really hope you had a marker flare because the drugs are working. We are with you, please keep us posted.

Husband11, if you remember, few months ago we discussed xeloda for your wife and there were really no obvious reasons why it should not be working for her. Less fluids means something is improving, isn't it?

Hugs to all, Saulius

Hello all, popping in to introduce myself as a newer member of the group. Just diagnosed stage iv de novo, triple positive, with extensive spots on the liver (and one on the spine) but the very large spots on the liver is what is scaring me the most. I’m 29, my husband and I didn’t see this coming at all so still kind of in a “processing everything” type of state of mind at the moment.

My oncologist is starting me with Enhertu as first line of treatment, saying because my liver is worrisome she wants to start with chemo first. Apparently it got recently approved to be used as a first line of treatment, I’m of course hoping for the best results possible but waiting for treatment to start feels like I’m just letting it grow more and more so trying to cope with that. I start treatment June 13th and at least have some other appointments in the meantime to make me feel like I’m doing somethinggg (chemo teaching, Leuprorelin injection, port procedure) but I’m just so ready to get started.

Just mainly wanted to say hi, I’ve popped into a couple other discussions as well but since you all can relate to liver Mets specifically felt like this is a great discussion to join.

Bobbi Jo

@rk2020 Thank you so much for your response and the good luck being sent my way! Very well put to prepare for the worst and hope for the best. Looking at the recent comments I’m sorry you’re in a waiting period with the trial you’re doing. Hoping for good results from the scans.

@nopink2019 I’m bummed to hear of your bad numbers. I’m on the anxiety train this week too. Please keep us updated. Hugs.

I recently started having some discomfort to my upper right abdomen that I never had before. It only bothers me when I lie down. Bloodwork done yesterday shows slight elevated bilirubin, 1.10 mg. My creatinine is 1.09 mg and gfr is 56 altho my kidney blood tests are often slightly off. All other bloodwork is in normal range, tho the ca15-3 result isn’t in yet.

I get a bone and ct scan in a month. Have been on Xeloda 3 years and 3 months for the bone mets.

What might I expect or be looking at? Any advice or insight is appreciated.

It’s funny divine because, after seeing your message over the weekend, I realized that the right side of my trunk had a sore spot. Figuring it was a muscle strain from yanking the pull cord to start the lawn mower on Friday, I did mention it at my oncology appointment this morning. Poking & prodding the area made me feel it but the doctor didn’t seem concerned.

During 3 of the years I was on Verzenio, my CA 15-3 was always around 50. Then, in spring 2022, it popped up to 60 and stayed there a few months. Summer saw a jump to 70. By fall, when the hepatic metastases were found, it topped out at 80. Once I finally got on treatment, it dropped about 10 points every 4 weeks and has been 44-45-46 since March.

You’re certainly correct to investigate what’s going on. The liver is encased in a tough capsule. I remember when the biopsy needle pierced it under conscious sedation, guided by ultrasound. It was a surprise to me. That’s why I asked if you felt pressure. Inflammation, etc. can cause stretching which might feel like discomfort. A B9 lesion could be hemangioma.

Well, it’s official: my UW-Madison oncologist phoned this afternoon to let me know I’m a “go” for their KEYTRUDA trial. I’ll have a liver biopsy then get my 1st infusion the next day. I’m told the last spot of 47 was held for me. FoundationOne showed a qualifying level of PDL1. Otherwise, a triple negative diagnosis is required to receive pembrolizumab.

A port is planned for subsequent treatments which are every 3 weeks. The poor veins in my non LE arm are finally getting some relief! Since IV access will already be there, it’s possible Enhertu could be my 4th line of metastatic therapy. I had a good 4 year run on Verzenio and had hoped alpelisib would be helpful. It kept my tumor marker numbers stable.

However, hepatic MRIs with Eovist contrast kept showing slightly advancing disease. So, on to the next thing…

My wife has had ascites and it has come back. Depending on the doctor, sometimes they drain it, sometime they say they can't drain it, sometimes they drain it very well. She has a regular schedule with a really good guy now, and he will drain either side guided by ultrasound to pick his spot. Some Doc's fear draining one side (can't remember whic) because its too close to your intestines. Some drain with suction, and that doesn't seem to work as well, but it is faster. Others just use a line and gravity, and while that may take hours, it seems to be more effective.

Are you on diuretics to try to slow the ascites? Salt reduced diet?

Husband11- how is your wife doing these days? how is the Xeloda going?

Thanks for asking about my wife. She seems kind of steady state right now. Perhaps some improvement in her energy levels and quality of sleep. She has this nasty cough that is a leftover from covid, some 8 months ago, and it still dogs her. At least she isn't coughing through the night anymore.

We hold out hope that she will get the tips procedure, where they install a shunt in her liver, to reduce the ascites caused by hepatic hypertension. The hepatic hypertension isn't a good thing, it causes varices that can bleed in anywhere from esophagus to stomach. She had a bad bleed back a couple of years ago and almost died. I measured her resting heart rate, and it was like 120 bpm, and I knew that wasn't right, as she had been lying in bed. Turned out she had a bleed in her stomach and her hemoglobin was extremely low.

We pray that the xeloda is working on her cancer. No reason to believe it isn't, aside from some imaging of a vertebrae with something going on that they can't discern whether its healing, or cancer.