How are people with liver mets doing?
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Hi, all - my first post to this topic. I'm currently on Enhertu and had my first decrease in my liver mets at 3 months scan back in November. None of my other treatments were successful with the liver. Bones seem to be stable. But I had to take a 4 week break from Enhertu in January due to lung concerns - scans showed ground-glass opacities in one lung. I have labs drawn before every treatment, and after the 4 week break, my liver enzymes were elevated. My first dose after the break was reduced 60% to give my lungs more time to stabilize. I had labs drawn on Tuesday and had my second dose (80%) of Enhertu since the treatment break. But I got the results of my CMP panel today and my liver enzymes continued to rise even after my first dose.
AST - 76 in January, now 294
Alkaline phosphate - 175 in January, 260 now (this has remained elevated through Enhertu, and I don't think this is uncommon)
ALT - 49 in January to 139 now
My question is about the enzymes - do you all feel that an elevation in the liver enzymes correlates to progression?
I think I'm facing moving to my 5th line of treatment since my stage IV diagnosis just over 1 1/2 years ago.
Thanks for your responses,
Linda
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@linda2119 I wish I could answer that, but no mets in my liver. I do however have mets alongside the liver which resolved as of my scan from last week. I use Ibrance and Fulvestrent along with Zometa (changing to Xgeva next month if insurance approves). I hop3 someone comes along with an answer for you and wish you nothing but the best !
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@linda2119 we're so sorry for what you are going through. 💜 Abnormal blood chemistry results (elevated enzymes) indicate (or suggest) that the breast cancer has spread the liver. But ask your doctor if continued elevation means further progression.
We are sending healing energy that the meds will decrease those mets!0 -
Dear linda2119, the increase in ALT/ALP/AST can be induced by Enhertu (they are not critical though). Can you and your team discuss and experiment with reducing Enhertu to 50-60 % dosage constantly? Hugs, Saulius
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In spite of taking my Verzenio faithfully my liver mets have grown and multiplied. So my oncologist wants to switch me to Xeloda and . Has anybody here had success with this kind of treatment. Any tips or tricks?
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Hi @AJ! So sorry to hear that the verizon is failing you. We are hopeful the Xeloda will kick butt! There's lots of good info in the Stage IV Xeloda thread you might find helpful, if you also want to post there:
We hope this helps!
—The Mods
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What a crazy week…
My current oncologist (Dr. J, who is 98% awesome) turned me down for a liver biopsy after the cancer spread from my lymph nodes, so I went to MD Anderson Houston on Monday for a second opinion. Dr. K recommended a liver biopsy and either Enhertu or Halaven depending on results OR a clinical trial if they could find one that is perfect for me. Although we have no scan evidence yet that Trodelvy is failing, the lab numbers (tumor markers rising and alk phos high) and new pain in my shoulder/side (referred liver pain), she felt that I was progressing, but to go ahead with my next Trodelvy (Wednesday).
Fast forward to Wednesday. Dr. J cancels Trodelvy, recommends a liver biopsy (scheduled for Monday), and to start Halaven or Enhertu on Wednesday, ordered a baseline MRI, and a new PET scan. So basically the same consensus as MDA, just happening 3.5 weeks faster. The big difference is she doesn't want me off treatment for the 28-day washout period needed for a clinical trial until we get the progression under control. I agree. So 4 rounds of Halaven/Enhertu then reevaluate for possible trial. I can always go back to H/E if the trial fails.
So I've been researching trials and found 19 I could possibly be eligible for, but they're all phase 1/2. I was hoping for more of a sure thing in a phase 3 trial, but by the time I'm ready for a trial, I feel like it'll be a Hail Mary pass anyway, so phase doesn't really matter.
This will be my fifth line in 4.5 years. Not bad, but I'm blowing through them fast (2 months on Xeloda, 4 on Trodelvy) in the last six months. I have no real targetable mutations (FGFR1 is the only one and there's only 1 trial for it) and until the biopsy says otherwise, I'm HER2- so I feel like my options are severely limited now. My liver has innumerable lesions, and though my liver numbers are okay, they're bound to go up if H/E doesn't give me a great response.
I've been pretty brave since my diagnosis, but I'm not gonna lie - I feel like I'm going 100 mph toward the edge of a cliff with no sign of a slow down and it's freaking me out. No one will give me a time frame (not sure I want one) but I'm guessing I have a year tops. I hope like hell I'm wrong.
Anyway, if you made it this far in my post, thanks for reading. It's good to have a place to write it all out.
Best wishes to us all for peace, strength, and health.
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Hi @cblaurenceauthor! It's great you're exploring all your options, considering clinical trials can be a hassle. Our article on 'How to find a clinical trial' might offer some helpful insights and guidance as you navigate this process. You might also be interested in this podcast:
We hope this helps! Let us know how you're doing.
The Mods
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Thank you, mods! Will do.
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HHi
Sorry about your progression, and i hope you find a good trial and a med that work for you.
I read this interesting article about a women with extensive liver mets, that almost died, but than she had chemo ingected directly to her liver. She is living now for many years. I know she is an extraordinaire survivor, a single case in to many, etc...but I also have a friend in San Francisco that had the same treatment to his liver and now his cancer is very under control, for quite few years now. He didn't have metastatic breast cancer, but liver cancer, so it is different...
Anyways I wish you all the best, i really hope you will find something that keep you stable or to remission.
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Hi @amel_83
Thank you for the well wishes and article. I will absolutely mention it to the MDA oncologist and see if that is an option for me. My local oncologist doesn't seem receptive to my questions about treatment options - maybe I'm being unfair as she is super open to answering all the other questions I have (she spent 45 minutes with me last appointment when I said I was confused about a scan) - but the fact I feel that way limits my ability to advocate for myself. Fortunately, the MDA oncologist seems totally open.
I was reading a thread here about ERBB2 mutations and found wonderful information about drugs that may help (so many brilliant women here!). I have trial options and hope for Halaven and/or Enhertu. All my tests are scheduled (liver biopsy, PET, MRI, and echo) so I'm better mentally today than I was yesterday.
Thanks again for the response and support. So appreciated you don't even know. :)
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I had my gallbladder removed earlier this week so they also did a liver biopsy. The biopsy didn’t show any mets so I’m very thankful, but the dr also said that the lesion was too small to find with ultrasound so I’ll still need to follow up with an MRI this summer.
Does anyone have experience with a biopsy and/or gallbladder surgery? I expected to have minimal pain after three days, but my right abdomen is still really sore. I have 4 small incisions on my right side and 1 on the left side. The incisions themselves don’t hurt but it feels like they disrupted a lot of tissues or muscles when they were in there. I know I shouldn’t expect recovery for 1-2 weeks, but my procedure doesn’t seem to have been nearly as easy as my Mom’s or my brother’s surgery. Since they didn’t have a biopsy I’m guessing that might be the difference.
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@cyathea I've had two liver biopsies. Neither of mine gave me lasting pain, but it could be a difference of where they went in or where the lesions were. I'd be more inclined to blame the residual pain on the gall bladder surgery. Have they called to check in on you? I hope you're starting to feel better today.
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@AJ I'm just checking in and saw your post.
That really sucks that there is some liver progression. I think it's good that your first line of treatment lasted for a year and a half (if that was your only line of treatment).
I hope the Xeloda works for you and is nice to you. I'm sending you strength to navigate this next phase.
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Hi everyone,
TL;DR - Has anybody ever heard of a PET-CT scan failing to pick up active cancer?
The PET I had in January said I had stayed stable from the November scan, and the March scan said I had improved from the January scan.
But what actually happened is the cancer had been growing like a damn weed while on Trodelvy. I'm so upset about it. They're supposed to be 90% accurate, we trusted the results, did everything right, and now I have liver pain, my alk phos is high, my liver numbers are high… The cancer has basically been running amok since August because Xeloda and Trodelvy both failed.
My MO said the PET sometimes picks up necrosis instead of active cancer, but that makes no sense to me. Maybe I misunderstood. I know for the January scan I wasn't there for more than 30 minutes after the dye because they had such a hard time accessing a vein, we were way behind schedule. The second time about 40 minutes. Maybe that has nothing to do with it, or maybe the center (I tried someone new) is just horribly incompetent, but I'm having a hard time letting this go.
I'm on Halaven now (which put me in the hospital for a few days) but will hopefully work with a dose reduction.
Hope all is well in your worlds.
Thanks for reading and any insights.
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@cblaurenceauthor I am so sorry to hear this happened to you. My experience has been just the opposite meaning that a CT did not pick up cancer that my PET did. And this happened on a couple of occasions.
Does your facility require a low carb diet the day before your PET with a 6 hour fast before the test? Every facility has their own prep guidelines but no matter where I go, I still do the low carb, no sugar, no exercise. I figure it can’t hurt.
I sure hope Halaven does what Trodelvy and Xeloda failed to do.1 -
cblaurenceauthor,
I am so sorry that this happened to you. Your frustration is understandable. You mentioned that PET scans are supposed to be 90% accurate so perhaps that’s where your answer lies. Someone will fall into that 10% possibility of error. Additionally, no imaging is perfect. Could someone have been incompetent? Possible but there is likely no way to know unless you have an independent evaluation of the earlier scan.
I say this as someone who had a life threatening complication of a procedure that resulted in a week long hospitalization and a month at home with a portable chest tube. There was even imaging done after the procedure to make sure this complication didn’t happen, yet it somehow did! The chances of this complication happening (and not being discovered for 2 weeks) is less than 1%. Even the unlikeliest of complications/side effects can happen and my complication was life threatening.
I understand that you “did everything right” but there are simply no guarantees and modern medicine, despite myriad advances, is not foolproof nor perfect. I also understand how upsetting this is and hope you find some peace as you move forward.PS: My PET scans continue to pick up my bone met, although it is necrotic. It is not metabolically active but, as I am not a radiologist, do not know enough about how to read/interpret scans to comment on whether an error in interpretation could have been made.
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Hi @rk2020 & @exbrnxgrl
Thank you for the responses.
This place says water only 6 hours prior is the only restriction. Eat whatever you want the day before. Now, it's possible, that the guy who booked my appointments had that wrong, but wouldn't everyone's scans be inaccurate?
I guess I'm looking for someone to blame for my rotten luck of being in the 10% of inaccurate scans. But even so, two in a row? That just seems so highly unlikely.
I saw my MRI results just now, and 60-70% of my liver is now tumor. I'm beside myself. No wonder my oncologist mentioned palliative care when she saw me in the hospital. I knew it had grown, but didn't realize by how much. I mean how long can a 30% functioning liver last? I probably don't want the answer to that question.
Thank you both for responding. :)
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cblaurenceauthor,
Completely understandable that you’re looking at someone to blame. To add the the scenario of things that seem highly unlikely… After the nightmarish insertion of a chest tube in the ER (it made natural childbirth seems like a picnic), I leaned over the side of my hospital bed the next day and the chest tube literally fell out! This despite the fact that it was stitched into place. Talk about unlikely 🤷🏻♀️. It was re-inserted but my lung was still not inflating so they decided to insert it through the front of my chest and used lots of good drugs during the procedure 😉. Yup, sometimes the most unlikely and even unbelievable things can happen.
Lest you think that my doctors/hospital were not up to snuff, I have been a stage IV patient for 12 years with no progression and am currently off all treatment. Another unlikely situation, but low risk of complications or failure to pick up things doesn’t mean no risk. Again, I have no idea if incompetence was involved in your situation and it is possible. For me, it was just plain bad luck. There is very, very little in life that comes with a guaranteed outcome.
I have to say that since having had this extremely unlikely experience, I truly understand how anyone can fall on the wrong side of the odds. It stinks and I am truly sorry that you are dealing with this.1 -
This is a long ramble but I’m feeling the need to put my thoughts on paper. I have been lying low for a long time but still take time to catch up on a few threads periodically. In 2020, I joined BCO to get support from the Ibrance thread. That group of ladies helped me more than they will ever know. Unfortunately, since then we’ve lost some of those beautiful souls. 😢 They will remain forever in my heart.
I had my liver treated with Y90 last December and January. We treated the right lobe first because it was in worse shape and rapidly growing. I received PET results last Friday and things aren’t good. Ive been in considerably more pain recently so some news was expected and some is just disappointing. Y90 worked great on my right lobe but not so much on the left lobe which was disappointing. Worsening existing lesions in my left sacrum, left iliac and left femur are not a surprise. I've got new cancerous lymph nodes and bone lesions show up in numerous areas. The new lesion in my left humerus is very painful and impacting use of that arm. Acites mildly worse. Pleural effusion mildly worse. New cancerous nodule in my lung. I’ve never had lung involvement before. This doesn’t include my fibula, tibia, right humerus and extensive skull mets that show up on my bone scan. My clivus bone is completely involved and they want to radiate because this is a gateway to my brain which could cause serious quality of life issues. My belly and left leg are very swollen. Diuretics are not helping. I’m seeing a palliative doctor and next week will start some palliative radiation to my most painful areas. But that’s it. NO MORE treatments for me. From the beginning I’ve said that I value quality over quantity so please don’t ask me to continue the fight. My body is tired and worn out and this is my choice on how to die. I want my palliative doctor to help me with quality of life in this last chapter of my life - pain relief and maybe something to raise my energy level. Right now I sleep A LOT and am drowsy the rest of the time. If I’m not in pain, I want to be awake to listen to the birds sing, enjoy my beautiful gardens and spend time with my husband. My son just flew home this morning after a 5 day stay with me. After he left for the airport, I had some moments of big, ugly sobs. I cried like I haven’t cried on decades. But he is a capable, self sufficient 30 year old man that will miss me but will be alright without me.
I hope to be around for awhile to post if I feel I can help. Nobody knows my expiration date but my cancer is definitely fast growing. I wish you all a peaceful heart and the best possible outcome from your treatments.
With love,
Regina3 -
Oh Regina, I'm so sorry to hear the news. Even when we know it's coming, it's hard to absorb and process. What a brave decision you're making to stop treatment.
Sending you peace, strength, and love.
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Regina, you have always been one of my favorite people here on these threads. I cried reading your post and I'm also grateful that you're willing to share with us your decision. I respect you so much, and I'll be praying that palliative care gives you the absolute best quality of life you can have. I hope we'll meet up someday, in the big sled in the stars, with cocoa and carols. Love you.
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@rk2020 Regina, like @sf-cakes said, you are one of my favorite BC friends on here, first meeting on the Ibrance thread. You've given me and many of us so much support and camaraderie. I remember you writing that you value quality of life over quantity of life so I understand your choice. I am crying as I write this, especially thinking of your son at 30 - who is a creative, self-sufficient man because you raised him well.
None of know how much time we have left and I sure hope you enjoy your time (and palliative care helps you) knowing that you are loved and made a difference in this world. @sf-cakes i remember the sled and cocoa discussion from years ago and I'll be there, too:)
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rk2020, I’m very very sorry to hear of the progression. You are always so compassionate towards everyone on the forum and your posts are always filled with such helpful insight. I offer the same sentiments as sfcakes and aprilgirl, appreciative of your sharing what’s going on and respectful of your decision regarding the direction you chose to take. It’s hard to know what to say, but I am thinking of you at this time.
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rk2020,
My thoughts are with you.
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@rk2020 Regina, I am so terribly sorry that you have had to reach this point with your journey. I wish there were better treatments to give you, all of us, more time. You touched my heart greatly as I know you did others and I hope that the radiation treatment gives your pain relief. Enjoy your gardens and the birds and DH and that delightful young man of yours. You will be in my heart.
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