How are people with liver mets doing?
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thanks for checking Bev. If I learn anything I’ll be sure to share since it seems like a few of us are experiencing it. The radiologist has noted the pseudo cirrhosis on multiple reports and has continued to say it has progressed with every scan. I don’t know if I’ll get much more info but I will def try !
Sorry to hear about the bad connection. That’s frustrating especially when you’re relying on the info you get through there. For us , it’s either in person or phone. No video chat at all which I would find the next best thing to in person. For some reason I just never feel great after a phone call . I just never get what I want from it .
and Nicole , if it makes you feel better , my Tms are never measured and my bilirubin has gone from 8 one day to 6 to 10 and most recently 12 (abnormal is 20.5 or higher). And sometimes I get nervous about the fluctuations but they tend to hover around a few points. When I was in liver failure it was 85 and I was starting to turn yellow. It was awful.0 -
All this talk of pseudo cirrhosis is scary. I'm currently on Abraxane.
moth…great news that the Trodelvy is a go. Let us know how it goes.
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Jackie,
It is very scary.
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Dear Nicole, yes, please keep us updated about your scan dates and next steps. Saulius
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B-A-P, did you have diffuse mets to the liver? I'm wondering if that might play a role in it, as that is what my wife had in addition to some discrete tumors. If the cancer is peppered throughout the liver, the effect of killing off cancer cells, might be more widespread than a discrete tumor where it is localized. Maybe the widespread distribution of dying cells causes a more widespread effect on the liver?
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I agree, learning about pseudocirrhoses has been scary. I'm sorry that has been added to your plate B-A-P.
So…. On my front it appears my kidney issue is worsening. Pain in my right quadrant, under the ribs, has ramped up with more pain in my back right side. It's pretty much constant now. While the fullness/pain under my ribs could be my liver (today I added pain in my right shoulder blade which is likely referred)I think the back pain is more likely the kidney given that moderate to severe hydronephrosis was described on my last CT scan in mid-September. My MO didn't discuss it as I think the preferred approach is to treat the cancer to deal with the cause. I'm only one cycle in on Eribulin - due to start round two on Friday. Not sure how long it would take to stop the tumour growth if it's working.
I have a call with an NP today as part of the chemo follow up and will let her know. My regular MO is back from his sabbatical next Tuesday thankfully. Wondering if I need a stent. Sigh….
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Register here: https://breastcancer-org.zoom.us/meeting/register/...
Hope to see some of you there!
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Hi Husband,
Yes, at my recurrence in December 2020, it was described at diffuse/extensive mets but there were some that were distinct Like one by my IVC was like 4 cm to start, and by the end of treatment it was barely measurable. I had a few of those but mainly it was peppered all over. By the end of my Abraxane regimen i had maybe 5 teeny tiny mets at a max of 4mm so my MO took me off treatment to give me a break bc she felt I had maxed out on the treatment (but I don't think so bc it had continued to shrink everything) . Tamoxifen was restarted.
Post CT did not mention the PC but the Mri showed the start of it. This was JUne 1st. By July 10th I was having symptoms of fullness, and lack of appetite. Like things I LOVED to eat were no longer enjoyed. I talked to my GP and he said my Liver enzymes were up. Subsequent Bloods were showing increases. MO moved up my CT but not my MRI, CT showed what looked like further regression of disease. Because of this they did nothing else to speed or change anything.
By August I had my MRI and after a week I was in pain so I went to the ER, Liver enzymes up again. MRI was again showing PC and hepatatoxcicity. 4 Radiologists looked at the scan and not one thought it was cancer.
So they did a BX and the radiologist said she saw flecs of something all over my liver but it didn't look like cancer. She thought fungal. Realized at that point I had A Portal vein Thrombosis and ascites that were too low to drain. The next day I blew up and was told to admit myself to the ER and to Med/Oncology. Bx showed cancer and I was admitted and that's when shit hit the fan.
My concern is that it keeps progressing and looking worse on the scans. So I just want clarification on what they think about it. She was more optimistic that the ascites may possibly clear eventually ( but i'm not holding my breath). I think this round of things, I probably had diffuse mets again as there are no measurements on the old scan , just lots of bright uptake. Now the uptake is no longer active.
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Sadiesservant,
I had pain at my 11th rib, right side. A scan showed that it was a tumor in the soft tissue between my ribs that was eroding my rib. I quickly got it radiated before starting the clinical trial. Now I only feel the pain when I do yoga backbends and I think that will eventually go away.
Hoping Halaven does the job for you.
Hugs, Susan
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B-A-P,
One thing that I forgot to mention that came out of my Telehealth appointment yesterday is that we discussed me seeing a liver specialist. Honestly, I think my doc needs to talk to the liver specialist so she can make sense of all of this. Have you done that? I have been on xeloda and having a terrible time with it, and it's one of the drugs named in a couple of the articles that I read about what drugs people were on before they were diagnosed with PC.
This is the craziest thing, and I don't think MOs know enough about it because it seems to be kind of rare. This is one time I don't want to be special at all.
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Bev who would be a liver specialist? do they mean a Gastrointerologist?
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Nicole,
Re liver specialists: I assume so, although I believe that gastros can be even more specialized (at least that's the impression that I've gotten from reading the literature on Pseudocirrhosis.)
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OMG! Rant coming. I am so fed up with the situation at my local Cancer Agency! Just had a call from them and my appointment with the NP has been pushed to tomorrow. Apparently she had her COVID shot yesterday and is not feeling well. So, sorry... hey... I only have cancer... you go ahead and rest up.... (insert eye roll).
I get it and I know it has hit everyone differently, particularly the booster but shouldn't they make sure that there is someone to take over instead of canceling appointments at the 11th hour? I am feeling crappy with whatever is going on with my liver/kidney, trying to keep things together until my MO is back. Good lord...
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Oh no Sadie, that sucks. I'm sorry that you're not going to get your appt.
Re liver specialists, as I understand it there's a hepatology fellowship that gastroenterologists can do. They're sometimes called hepatologists.
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A liver specialist is called a Hepatologist. Some of them are involved in transplants, treating cirrhosis, etc.
Sadie, that sounds so frustrating, and ill planned on the part of the Doctor.
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Yikes Sadie I would be frustrated too. I had my booster yesterday and feel like garbage but I’m flexible in my work and was able to take it easy. I don’t have patients relying on me though.
Bev, I’m going to see if I can ask for the liver specialist . I know they were going to set me up with one when they t thought I had hepatotoxicity but then they never followed through bc the biopsy showed cancer. I also need to ask about being followed for the varicies. The GI told me I didn’t have to be. I don’t know why - he was like “maybe in a few years” but I thought those who have had bleeds get checked on 3- 4 month increments. I know my risk to bleed again is higher and while I hate endoscopies, I know I got lucky by already being in the hospital when I had my rupture.
Anyway , tnr is just supposed to be a chart check to make sure I can start ibrance Friday so I’m hoping she doesn’t rush me off the phone so I can get my questions answered. Otherwise I don’t hear from her until mid feb.
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B-A-P,
I know it's not the same thing, but my brother, who was an alcoholic, had cirrhosis that developed into liver cancer. He was horrible about going to the doctor, but he had varices and multiple bleeds over a period of time, and there were no "years" in between his doc visits, that's for sure.
Thanks, Husband, for the technical term of the liver specialist. Once you said that, it clicked. BAP, I've heard nothing yet from my doc, but I am going to follow this like a dog with a bone because it was pretty obvious that she really hadn't seen this before. From what I've read, it's pretty rare, so I think that someone with more experience in this area is called for.
Good luck getting some info tomorrow.
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Just checking in.. I have nothing to update on the situation because she never called. I guess she's waiting until tomorrow since she has to speak to me in order to restart Ibrance. All that stress and no call. Rotted
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B-A-P,
Well, apparently my doc did follow through on the liver doc. I got a call today from that office at the hospital (I'm seen at Hopkins) and they set up a consult with one of their liver specialists. First available appointment? March 25. I guess this is the advantage of being seen at a large center -- they have a lot of specialists. The downside, though, is that they are very busy and it's difficult to get in to see these specialists.
Reading the articles on pseudocirrhosis, I could literally be dead by March 25. I am stewing. So when I calm down tomorrow, I will send my MO a note. I am afraid that going back on xeloda is not a good move, since a number of the articles I've read talk about capecitabine and its involvement with pseudocirrhosis. This is the proverbial rock and a hard place for sure.
Anyway, would appreciate hearing what you find out, if anything, tomorrow. Thanks.
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I am definitely not well versed or as well versed as BAP and BEV...but what I just am wondering is wouldn't any liver that has had MVA or Y90 etc...eventually have some bit of pseudo cirrhosis? I mean essentially those treatments are not only killing the tumors but the tissue around them....maybe I am just naive or dumb..but when I went into my cryo- and both Y90's I just figured once the tumors die and there is dead tumors there that there will also be dead tissue and well...damaged liver in those areas?
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Nicole,
Yes, there would be dead tissue, but I think that pseudocirrhosis is a bit more involved than that. From the articles that I've now read (never having heard of this before BAP started talking about it) it's more drug induced, and they have actually identified some of the drugs that more commonly bring it on. Mind you, also from what I've read, this is a rare condition -- one article said 1-3% of metastatic BC patients get it -- so it's not going to be everyone's problem.
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Gotcha Bev...any chance you can link to the article that states which drugs can cause this more?
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Hi Bev,
So we had a little chat about it and she said her and other doctors have talked about the cause in my case. They are wondering if its due to metastatic disease melting away or if my otherwise "young and healthy " liver regenerating. They think it's due to both. This is because my liver numbers have improved greatly and my liver failure reversed. So could this happen again? Yes. Could it reverse again? Yes. Could it regenerate and become healthier? Yes.
She said often times it is noted on scans and can be inconsequential. She admitted she wasn't sure about the case studies I spoke of and was not totally convinced that their deaths were 100% from PC. I do tend to believe her in that she is the head of breast oncology, a professor and researcher. I know the journals and articles say otherwise but I want to believe that she has discussed this with others and they are in agreeance that it could be part of the healing process.
She did say it's something we will keep an eye on especially if the liver numbers go up and will make plans if it gets to the point it's looking bad on scans and numbers. At this point, there is nothing that can be done other than that. She said she wouldn't be able to predict what is going to happen but the hope is that we stay totally on top of it.
I asked her why I wasn't being followed for my varices and she was shocked I didn't hear from anyone yet . So she's getting on that for me. I would hate to have a bleed at home because I doubt I'd make it if I bled here. I was luckily in the hospital when it happened.
So I hope this Helps put you at ease in your wait for the liver specialist. I would love for you to share what you discover from the liver specialist and see if our drs are on the same page. And in the mean time i'd call their office and ask to be put on the cancel list. I'd say with covid protocols, there are likely to be cancellations before then.
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Hi Everyone,
Nothing to update you with, as I'm kind of in a holding pattern right now. Had video visit with my oncologist earlier this week to go over my complete BC history again, to make sure she has all the accurate info on me to present to the tumor board. I've only been her patient for 1 year, and she is quite young. She was amazed, when we first met last year, and commented that she was only 16 when I was diagnosed, (same age as my son) Somehow that didn't boost my confidence level 🙄!
Anyway, since I've been off chemo since October, she wants me to have another PET scan on Feb 9th to restage, and then present to the Tumor board to hopefully come up with a plan. I told her I didn't want to have anymore chemo, and was hoping to go back on one of the anti Her2 therapies, even though most of them are only approved to be given with Chemo!
She did mention possibly getting a referral to Hope Rugo at UCSF, whom I saw back in 2002, when I was trying to decide best course of action for my liver mets. She is very renowned BC specialist, so I may pursue that.I am also scheduled for a follow up visit with the gastroenterologist, who did my endoscopy, at the end of March. He specializes in liver issues, and said my cirrhosis is definitely drug induced, and his plan is just to monitor me 🤷
At least I'm not in any pain right now, just have a very uncomfortable feeling of fullness in my abdomen all the time. So I only eat a little bits of food throughout the day.
Oh, how I hate being in uncharted territory!
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B-A-P,
Thanks for all of that info. It does ease my mind somewhat. the PC seems not to be terribly well understood, and the weird thing with me is that my most recent CT report said that stuff looked pretty much the same at my last CT in October. In that report (October) there was no reference to PC -- it was a glowing report on how much my liver disease had receded, and both my onc and I were very happy.
I am on the wait list already for the liver specialist, so as you pointed out, I may indeed end up getting in there sooner rather than later. I'll be sure to report back in.
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Nicole,
There are a bunch of articles if you google pseudocirrhosis, but I thought a good one was this one:
https://www.karger.com/Article/Pdf/448066
For whatever reasons, it takes a long time to load, so realize that. If you want to read more, I would just google it and look for one of the scientific journals.
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Bev,
It's great that The scan in October was good and no mention of it. Mine was first mentioned in May and Many scans later, it only looks worse and more pronounced which is very scary. I'm just glad they have eyes on it and know what to look for. She tried to be as comforting and conscise as possible so I wouldn't fret over it. She's confident that I take care of my liver by not drinking or doing recreational drugs (which I don't) and is very pleased with my enzymes. Bc of my history, they will know if there are consistent rises, then we need to take care of is asap, though I don't know what they'd actually do . They don't know how I managed it reverse it the first time without dying ( cause I was very very very close). It is scary, I wont lie, but besides keeping an eye on it, there's not a whole lot that can be done.
I hope that you get some answers very soon and feel comfortable in your treatment choices on your liver. May we be comforted for now that even though I have a nasty looking liver, maybe it's on it's way to healing. Who knows. I'd be happy to send my Pet report to you if it helps
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Bevjen, that was an interesting article about pseudocirrohsis. Too bad it doesn't suggest any treatments. I can't help but think when they say it is typically brought on by chemotherapy, and then they list the most used chemotherapeutic agents, that they are simply describing the most prescribed therapy for metastasis to the liver. It's only been recently that milder therapies like cdk4/6 inhibitors have been approved, and even then, they aren't typically recommended for "visceral crisis" which is what extensive liver involvement would be. So, is it brought on by the chemo? If it is, why then doesn't it appear in stage 3 women being treated as an adjuvant therapy? Makes me think its the combination of the chemo and the liver mets reaction to it.
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Husband - from what my MO said , there appears to be no treatment for it except using less toxic therapies. I did find two studies talking about ibrance causing PC as well. But I think like she said , there are a few causes it appears.
I was in visceral crisis when prescribed ibrance BUT they refused chemo after my liver shut down more after one dose of gemcitabine and carbo. But I had a lot of other things like peritonitis and bleeds on the go at the same time. They felt iv chemo would kill me faster so I begged for ibrance. Through huge hesitation they did and now I’m NED. For how long , who knows. Hopefully a while. I’ve learned in the exception to the rule. they have no clue how I’ve done it . But I’ll take being an anomaly any day.
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Husband,
That article was from 2016. But the more recent articles pretty much say the same thing. As BAP said there is even one article out there that says that Ibrance can cause it (but I only saw that in one article.)
So for now, I've been emailing my MO all day. Xeloda and I have not been happy companions all along, and I was supposed to restart next week. However, I cannot get into the liver specialist (hepatologist, as you noted) until March 25 unless there is a cancellation that I can take (big hospital, everyone wants to be seen there). I told my MO that in light of the articles that I've read, I'm not comfortable restarting xeloda with a 2 month wait (especially in reading those very scary articles). So we've come to a compromise. I am continuing on neratinib (which I take because I have two ERBB2 mutations) and I am going to restart on fulvestrant instead of the xeloda. An article is forthcoming about how well this combo did with HER2 mutated cancers, and I was very comfortable on fulvestrant -- honestly, I didn't even mind the sticks. So that's the plan until I see this other doc in March. I'm satisfied with that for now.
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