How are people with liver mets doing?
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Hi,
Just thought I’d give a quick update on my previous posts last month.
After two large liver tumours were discovered (through bloodwork) I immediately changed treatments, from Enhertu to weekly Taxol. I’ve only done 4 treatments so far, so a bit early to tell if the chemo is working, although my AST and ALT have been decreasing, which my oncologist feels is a good sign.
I had a biopsy done and the pathology of the new tumours is the same as my original breast cancer. ER+, PR-, Her2- (classified as Her2 low) I guess my previously “indolent” cancer has become more aggressive, which is a little scary.
Anyways, I’m getting used to the new treatment and the side effects. One side effect that is causing quite a bit of pain for me is pretty severe acid reflux. It’s taking me out for almost 2 days each cycle. I’m taking Pantoprazole. I have had a follow up ultrasound and CT Scan which did rule out anything more sinister causing the pain. Wondering if anyone else has experienced this?
Hope everyone is doing well and enjoying September.
Anna
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@missmonty, acid reflux has been a frequently reported side effect from the taxane chemos like Taxol. Many of our members have reported finding relief from over-the-counter Pepcid or Prilosec. We recommend checking with your oncology team to ask if that would be a good option for you.
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Thanks Moderators.
My oncology team is aware and do have me on the Pantoprazole to try to control things. I’ve just been so surprised that acid reflux could cause such severe pain. Anyways…hopefully we’ll come up with the right combination and dosage to manage things a bit better.
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As a retired pharmacist, I wonder how much of the proton pump inhibitor pantoprazole you’re taking. If I were you, I’d ask for a referral to gastroenterology. You certainly don’t need acid scarring your esophagus!
I had paclitaxel=Taxol when a single dose of clinical trial Keytruda blew up my liver. Along with Gemzar, enzymes came down nicely but then I developed pneumonitis. That required another round of high dose steroids. Now I take Xeloda.
This week, MRI with Eovist contrast saw a single tumor which doubled from a half to one full centimeter. Other small lesions seemed to remain stable. My CA 15-3 was creeping up so a nuclear bone scan & chest CT are on order.
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Hi vlnrph,
Thanks so much for the suggestions. My MO is pretty sure it’s the taxol causing the acid reflux, given the timing of the “attacks” (1-2 days after infusion) In addition to the panto (40mg) he’s prescribed sucralfate to take on days 1 and 2 post chemo. I hope this combination does the trick.
I hope you are doing well. I took Xeloda for a year and for me, it was fairly tolerable. I initially had a “mixed” response, but after that first CT Scan I remained stable for a year. Wishing you long term stability.
Anna
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Hi
I'm in a total panic mode! I felt like there were something bad happening with my liver, and it actually was. After 2 years and half of liver mets that wern't actually causing any problems, I'm now in bed with a fever, with nausea, diarrhea, pain to my side abdomen, enlareged liver, general discomfort, and I feel like I need to fall asleep from one moment to the next.
My liver number went very up:
ALT: 152 (up to 49), AST: 373 (up to 34), bilirubina totale: 0,7 (0,3-1,2), bilirubina diretta: 0,3 (up to 0,3), fosfatasi alcalina: 294 (33-98), gamma gt: 395 (up to 38).
Everything happened in less than a week, as much as the first 4 days I though I had just a flu. But is getting worst by the day.
Unfortunately my next oncologist appointment is the 4 of November and they don't want to posticipate it. They just told me to dismiss my current theray. (I went to my family doctor and he told me my enlarged liver and liver values were the one causing all this, an not the flu, but still my MO doesn'twant to see me before). I feel like if I get worst at this rithm I'm not gping to arrive to that date, or my liver will be too messed up to receive any therapy.
Did anybody here ever had similar symptom due to the liver? I hope the cancer didn't spread in other part of the body. Were you staying this bad if you had similar liver value?
Any suggestions? Anybody ever recovering from such a down hill?
Thank you for sharing any advise or experience
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How scary! Insanity that your doctor won't see you sooner. Very frustrating I can imagine.
I don't have much to offer, but in Nov '23, I had an aggressive surge in my liver - tumor markers went up like 400 points in 3 weeks! My liver function was okay, but the cancer was all over my liver. I ended up in the hospital with a fever and was treated for a possible infection. I was put on Halaven/erubilin, and it started to work immediately. I've since progressed, but so far (knock wood) the cancer has not been as aggressive. I'm on a clinical trial now and after one dose, still holding relatively steady.
We have the exact same makeup - er+, pr-, her2 zero. And looks like the same treatment so far. I did kisqali/fulvestrant, eve+exe, xeloda (didnt' work at all), trodelvy, halaven, now a clinical trial.
Hoping your next treatment knocks it back. Don't lose hope!
Best of luck to you.
CBL
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We are trouble-tweens!
Thank you very much for your replay, it gived me hope! If I end up been to bad i will go directly to the emergency room so they will have to do something. I'm happy to learn that Halaven worked even after all the oline of therapy that we share!
I'm glad your trial is working, I wish it will be easy and effective!
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I just came out from a mri at the urgent care and they told me my liver mets didn't grow but I have ascites! I'm so terribly scared, I'm reading bad things about it. Do anybody here ever had ascites? Can it get resolved? It seem something very terminal from what I read online…my head is spinning from the panic. I will write it tomorrow to my MO, but I like to ear some experiences...
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I'm so sorry you're going through this. I don't have direct knowledge, but according to some posts I found in my Facebook group, a few women did have their ascites drained and with treatment resolve. It's gotta be so scary right now for you, but I wish you all the best and sending positive healing thoughts!
CBL
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Thank you!
They told me is probably an infection so they are giving me antibiotics and not going to drain yet the ascitis to see what's going on.
Hopefully is going to resolve and my TAC is non going to be a mess...
A wish you a good day and good luck to you too!
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Thank you!
But I'm still so worried...I hope I can sleep a bit now, it is 11.23 in the evening and I was still searching the internet...i should stop myself now, you just wake me from my google trance, thank you!... and they come to wake us up so early, like 5 o'clock, for blood and urine test. Insane......i hate hospital + panic...alone
But i like I can always come here for some support and nice words 💕
Good night to me and good day to you!
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Dear Amel, sorry this happens - we are with you. Hopefully antibiotics will clear up that infection and you'll be back to normal. Mets in control in the liver is very good news and assuring your great doctors will fix the bugger infection. Many hugs,
Saulius
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Thank you @bsandra for the wishes.
Unfortunately I think here there is more than just infection because they just sent me the results from my CA15-3 markers and they rise up to 471! I'm super scared...
Also I feel all in pain again and my fever too is rising up again.
I can't wait to have the TAC done the 31 of this months and the onco visit the 4 of November.
I wish they did it all days ago when I started to feel so bad...
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Dear @amel_83 ,
I am very sorry this is happening to you. Hope your medical team will find answers very, very soon. Uncertainty and waiting are the worst and I fully understand and relate to your worries.
I had a lot of liver pain caused by reaction to Verzenio. It took nearly a month to subside. Could it be that you have an adverse reaction to medication which also messes up with tumor markers?
Sending you positive vibes and gentle hugs.1 -
Yes wainting is terrifing!
I were also thinking about that as a possibility, a bad reaction to everolimus...
Thank you very much for your message and for the wishes ❤
Were you able to start back some therapies or you still on an hold?
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@amel_83 ,
I just started the 2nd cycle of Ribociclib. My liver enzymes , after the 1st cycle, are elevated but not in an ‘immediate danger zone’ as my MO said.
Hopefully this is going to work… It way too early to say but at least liver discomfort is almost gone.
Please stay in touch and keep us posted on your situation, we are here to support you!0 -
That's a good news that your liver feel better, and Ribociclib did work really well to me, and many of us, without too many SE, hope it will be effective on you!
I will post all my news as they come, thank you 💕
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I feel like i fell in a dark hole. I went from been ok, to have a liver failure, ascites, mets to my peritoneum, and also a 4 mm met in my brain. I though i would have a little more life in front of me but i feel like I will never recover this. They told me the important thing now is that the iv chemo (Caelix, somebody on this med?) work, because my liver is in danger. And if it work i will may have chance of other therapies...but will i survive this?? Also i read the poor prognosis of peritonean mets...i never even knew what they were...anybody here experienced that? Or have some positive stories?
They told me is the last of my problem now but they freack me out! Also brain mets...so scarry...any positive story about that?
I'm so not ready to die now, leave my 4 year older and husband...i'm so sad and scared...
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Dear @amel_83 ,
My heart is aching when I read your post. It is so, so unfair that you are dealing with this as a young mother.
I feel and understand your desperation, but the only way out is through: one step at a time, one foot in front of the other.
The first thing according to your doctors is to stabilise your liver, which makes perfect sense to me. Chemo could be the answer.I would focus on this first step.
As the doctors said, stabilising the liver may give you other treatment options, that could bring lasting results, including reduction of peritoneal mets and ascites.
With liver and peritoneal disease under control, the brain met can hopefully be irradiated into oblivion.So one step at a time… Bon courage!
You are in my thoughts.1 -
Oh @amel_83 I'm so sorry to hear your news.
I agree with @lacombattante - one step at a time. All you need is a little bit of breathing room so you can move on to other options. You've been so brave when things are so scary. Whatever healing and positive energy I have is coming your way—please keep us posted.
CBL
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Dear Amel_83, I am so sorry you are in this dark place… I wanted to encourage you - nothing is lost yet, and if drug works, it works well. I agree with others - one step at a time, liver first. Many many hugs, Saulius
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@lacombattante @cblaurenceauthor @bsandra thank you very much for your encouraging words, they were really needed! I should really think in small steps, one little thing after another. It will help mentally too.
I will keep you posted as soon as I have news. Hugs to everyone!
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Capecitabine/Xeloda has failed after 8 months. I had a 4 week break last spring for surgery but it continued working after that taking 3x500mg in the morning, 2 tablets with supper on the 14 days on/7 off cycle. Tolerated well, using diclofenac gel on palms & soles to minimize peeling.
However, my CA 15-3 was creeping up, same thing it did 2 years ago when liver mets were first seen. I’ll be moving on to Trodelvy then eribulin when progression occurs again. Last year, my longest stretch of chemo was only 4 months so 2024 was a nice improvement.
@amel_83 I hope you’re feeling better. Caelyx is a modified form of doxorubicin, a powerful med. Not to scare you further, but the original was known as the “red devil”. If you want to hear from others who may have had it, maybe starting a new topic would be a good idea.
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@vlnrph hi, my situation is getting worst. I have abdominal pain, lost my appetite, nausea, can't sleep. I think may be part is due from cortisone SE, but good part from the cancer. I hope Caelix will work soon or I don't know if I will have many options. My bilirubin is high so if it doesn't decrese I can't have more chemo...I feel so lost, so scared, and constantly feel bad doesn't help...
I saw saw old thread about Caelix, I may try to write there and see if somebody will answer.
TThank you very much for your message, hopefully the red devil will be aggressive enough with the cancer!
I hope Trodelvy will work well for you for long time, best wishes for everything
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Sending peace and strength, @amel_83 Fingers crossed Caelix does its thing and you get some relief.
Much love,
CBL
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Dear @amel_83,
I am very, very sorry that you are suffering so.
You just started Caelix, right? Did your MO comment on worsening of symptoms? Could it be a temporary flare up? Can they offer more medication to bring the symptoms down?
Just a thought on high bilirubin: in my case it was linked to obstruction of hepatobillary ducts by cancer. Stents made a world of difference.
Sending loving thoughts and support; I am thinking of you and wishing you strength.
Courage!1 -
@cblaurenceauthor @lacombattante
Thank you for your incouraging messages, very needed right now!
@lacombattente I think my MO is been a little slow with me and always super busy, always in medical trips, it is scarry to me because of my worsening. But I can take paracetamol for pain, and I wouldn't of though but it actually help. They are trying to avoid other medications because of my poor liver condition.
I was thinking about an initial flare too, I read it can happen with liver, I will ask my MO. Also thank you very much for the info about the stents. A doctess mentioned to me, but than when I tolk to my MO he kind of look at me weird and didn't answer. Than 2 days ago i made a video visit with a liver specialist and suggested it too. So I was indecided if bring it up again, but as I read your message about it I decided absolutely to wrote to my MO and I'm waiting for an answer hopefully tomorrow!
So thank you for all the info and encouragement!!
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