How are people with liver mets doing?
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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.
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bsandra- I too am finding the lack of posts lately difficult. I belong to other forums but this is the only one that I feel a personal connection with the participants. And I greatly need a connection to those going through some of the same challenges.
On a personal note, I have a CT scheduled for tomorrow and a bone scan on Friday. I’m on a trial which I knew was a long shot given that I don’t have an ESR1 mutation. ESR1 wasn’t required but I knew going into the trial that it would probably give me an advantage. My tumor markers are currently sky high - like 5 times higher than they’ve ever been before. I get them checked again next Tuesday when I discuss my scan results. Needless to say, I’m hoping for the best but prepared for the worst. If I have to leave the trial, I have to leave my research oncologist’s practice too. 😢 I’ve already got an appointment lined up with a breast cancer specialist in the Miami area. I will likely use her as a second opinion and get my treatments locally though my local generalist. So now I wait. And I’m not good at waiting.0 -
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.
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Husband… glad there was less fluid. Sad that your oncologist may be just wiping her hands with this. Have you guys thought about Enhertu next?
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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.
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Husband,….yes your plan sounds good… Ask about Enhertu….especially since your wife is most definitely HER2 Low….since she still have ER+
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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
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Husband11,
I'm not sure if you have seen the most recent CADTH decision for Enhertu and Her2+ low from today. It's recommended with conditions (mostly that the price needs to be lower) which means that the provinces etc… will now start the price negotiations. Which can be prolonged. But in the near term I know many Canadians (but no Manitobans yet) who have received Enhertu on a compassionate basis already. There's no mention in the decision about restricting those patients who've had targeted therapy already, but that will be up to the provinces. Hopefully your wife might be able to gain access.
https://www.cadth.ca/trastuzumab-deruxtecan-0
Sorry for all the bureaucrateze.
I hope that your wife's ascites fluid and liver situation improves, I hate to read that you are losing trust with her oncologist.
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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.
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@jobbibo - The beginning is extra hard. The waiting can be awful. It sucks that this happened when you are so young but on the bright side, triple positive has some really good treatments. If you respond well, I know HER2+ woman on the same treatment for 10+ years. Until we hear otherwise, let’s assume you will fall into this category. My personal way of dealing with this sh*t show is to prepare for the worst and then move forward and hope for the best. This thread has been a bit more quiet since the recent upgrade but I hope you find support here. There are some contributors with really great knowledge, experience and a way of making me feel support. Good luck on the 13th. I hope Enhertu treats you well.
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@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.
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I had blood work a couple days ago and while I have had liver mets, this is the first time that the blood work has shown lots of problems. I see the doc on Friday and expect a change of protocol. Have no idea what that might be. This will be a week of anxiety.
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@nopink2019 I’m bummed to hear of your bad numbers. I’m on the anxiety train this week too. Please keep us updated. Hugs.
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No Pink, My onc will not change protocol for higher tumor markers, only for what is confirmed on a PET scan. Drove me crazy with markers going higher, over 2000, and lobular cancer can be hard to find on a scan. A scan finally showed something in the pelvic free fluid and change was made the next day. I guess it makes sense somehow.
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@jobbibo Check your PMs when you get a sec — just sent you some info!
Sending love and good wishes to all here who are anxious and wondering what's next. We are all here for you! Remember, we offer our weekly Zoom meetups if you need a little extra love and support.
Big hugs to all,
—The Mods
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@ninaca, My MO doesn't rely a lot on tumor markers either. It isn't just tumor markers rising, it's the functioning of the liver that has declined. Guess I'll know more at the end of the week
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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.
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Dear divine, it sounds as though you’re concerned about liver mets given the location of your discomfort. I never had any physical signs but, after months of my tumor marker CA15-3 inching up, spots were seen on a PET scan. An MRI with Eovist contrast plus a biopsy clinched the diagnosis. The process took too long, almost 2 months, at the end of last year.
The specific gadolinium agent that best visualizes hepatic lesions is mentioned because for my initial imaging it was not used. Following a 2 week delay, I had to return for a 2nd session of breath holding, thumping, chirping, etc. Foundation One testing was done on my tissue revealing a PIK3 mutation in addition to a significant level of PD-L1 expression.
That latter finding has qualified me to apply for a KEYTRUDA and fulvestrant study. I suggest you look into clinical trials if your cancer has spread. They are not always a “last resort”. However, with too many prior treatments, patients can be excluded. On the other hand, there could be a benign reason for your symptom. Does it feel like pressure?
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vlnrph, thank you so much for your reply and all the information you provided. When you say your ca15-3 was inching up, what kind of range are you talking about? Mine has fluctuated between 16 and 22 or 23 the past several years. I cannot even say if my numbers would be an indicator of progression because for years my onc never had me get them, so I’ve no gage to compare them with.
It’s interesting that you had no physical symptoms. If I wasn’t dealing with mbc, I’d probably think the discomfort on my right side was due to a pulled muscle. But this has been going on for over a month. Through the day I’m rarely bothered by it and go about with normal activity. I can stretch or twist with no problem. I notice the discomfort when I’m on my back in the morning when I wake and when I go to bed at night. If I lay on my side, left or right, it helps. There’s no tenderness if I press my body in that area. Whatever the case, it’s something that’s different and I’m not quite sure what is going on. Of course, with mbc, I have the hypervigilance thing where I worry about all the what ifs. Thanks again for your post.
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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.
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vlnrph, thank you so much for your reply. It helps more than you know. My ca15-3 result came in and it is 28. That’s the highest it’s been in two years, altho I’ve been on Xeloda for 3 years and 4 months. Last month it was 22 and previous months were 23, 21, 19, 17. I will have to see what next months scans show. Not sure what benign conditions the liver would have but when dealing with mbc, that’s always the first thought.
At times like this, my thoughts go to “am I using my time wisely?” I also start thinking I’ve done something wrong, and have to tell myself that none of this is my fault and it’s not something I can control, other than take the meds.
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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…
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Both my CA 15.3 and CA 27-29 have been increasing and are each over 100 now. I know that this drug is not doing much good , but I think MO has run out of options . Within about a two week period I gained 3-5 pounds, eating very little. My stomach is very bloated and I scheduled a paracentesis. The ultrasound showed three smaller pockets, but nothing that IR thought could be drained, so at home. It's really affected my appetite as I am full all the time. Has anyone else had this bloating, but was declined the paracentesis?
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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?
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vlnrph, I wish you well on the Keytruda trial.
nopink, I hope you can find relief soon for the bloating.
husband, glad your wife has a doctor with the right skills to drain the ascites.
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Husband11- how is your wife doing these days? how is the Xeloda going?
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No one has mentioned either diuretics or salt reduced diet. I will ask. Thanks for the suggestion
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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.
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I've been on Xeloda for 6 months. Median progression free time is 6-9 months. I've started to have dull right upper quadrant pain and assume it's my liver. I've never had liver pain before. I had labs done today and my bilirubin jumped from .7 in April to 1.3 today (upper normal). Until now my bilirubin has always been below 1.0. I see my MO tomorrow. My next scans are not until early Aug. My MO does not use tumor markers to track progression and she has never talked with me about radiation treatment for specific tumors in the liver or bone. I was hoping to stay stable to 9 months or longer, but it doesn't look like that is happening.
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