How are people with liver mets doing?
Comments
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Babs I am so sorry to hear about your new mets. I am hoping they have a good plan that will provide an effective treatment that allows you to maintain a good quality of life.
Grannax I was also sad to hear your news. Hopefully with just one met they can do a local treatment. I know from my recent experience how disappointing it is to think all is going well, then suddenly find out it isn’t.
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Grannax, No progression, however, I had all 3 anemias, wb, rb and platelets. After treatment I'm feeling normal and my energy has improved, however, going forward the team is trying to find the source of the anemia's, probably more blood work and other procedures will be discussed. My thinking Is abemaciclib, with constant D, little appetite and other SE's I'm not surprised everything was so low. Right now I'm on break.Hope you has a good day.
-K
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Babs, I think of you constantly. I’m so sorry to hear this progression. The picture of your family was beautiful. I’m hoping they can find something to get rid of those mets. Rest and know I’m thinking of you. Hugs.
Love Anita
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Hi,
What I know is that bone mets is fairly easy to maintain stable so I a not surprised your 18 years out. My lungs responded very well and medistnum. However it´s the liver mets that is difficult and I have not seen many alive with liver mets over the 30 months average. I really want to be wrong.
so that is why I want to here from liver mets girls who are alive 5 plus years.
Raven
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raven- my liver mets diagnosis was in Fecember of 2012. Still battling. Hope that helps
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Raven, I know it is tough living day to day with bc & liver mets. 10 years ago, I was diagnosed. The onc gave me 2-4 years. I decided I wanted a lemon tree because, the thought then, was it helps your body be more alkaline. So I went to the nursery to get a lemon tree and they told me it would be 4-6 YEARS before I would get lemons. So, I left the lemon tree at the nursery. A couple of months later, I had the opportunity to get a free lemon tree. I said, why not? The first spring I had blooms and lemons grew. I realized, it wasn't going to be my time, until it was my time. Here I am 10 years later with my lemon tree.
Try to focus on something else besides the numbers. It is challenging, but doable. One year it was my grandson being born. This year it was my grandson going to kindergarten. Right now, I have another grandbaby due in March. My immediate goal is to play pickleball next Monday. So, I have to get my strength back up from the sepsis, by walking more. And learn to enjoy the moments. One minute, one hour, one day.
I hope this helps.
Therese
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Hi girls,
Thank you for the hope. I so need it. every peice of news I get lately is bad news. Today I had a cbc and thankfully my wbc was up to 23,000 ANC like 7. These are not end stage numbers they are thework ofthe Zarzio shots 5 to be exact. the numbers come down about 5,000 a day for 1-7 days. but thurday my body starts making new cells. as of thurday.
I had a second opion and since all mets are the same ER+/ PR+ Her2- he wants me to stop this toxic shit and start me on Taxol again alone with a pill called Xeloda. (Capecitabine) has any one with liver mets tried this combo?
Raven
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Raven, most people take Xeloda alone but it can also be given with Taxol although that is somewhat uncommon. It is really effective for liver mets. I would have stayed on Xeloda permanently if I had the chance. Excellent quality of life. Did the MO mention the option on Xeloda alone? I am 45 months and counting with extensive liver mets since dx. There was a woman on these boards with liver, lung, brain and bone mets from the beginning who lived 6+ years. Nancy. She ran half marathons and marathons up until the last 6 months.
Babs, I am super disappointed to hear your news. You have a good medical team that seems to stay on their toes with your treatment and think outside the box. May their solution for your brain mets put this BC in reverse.
Grannax, I am also disappointed to hear of your progression. You have some good options with local treatments, such as SBRT, perhaps surgery or others.
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Just returning from amazing European cruise. It was fabulous. I had a great time with 3 generations of family. Back to reality . . . .
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My husband took xeloda when he had pancreatic cancer. I don't know how many months he was on it before he started having the hand and foot issues. Now, I've heard they tend to reduce the dose and the SE are easier to control. It seems like it does a really good job on liver mets.
My doc mentioned it for me, frankly I would rather take it than AA. But, she wants to try AA for a few months, it's worth it to try I think. I've never heard of it being combined with another drug, either. I sure hope it attacks that stubborn liver met for you.
I know there's a xeloda thread. I'm sure it has lots of info.
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Raven - I was originally diagnosed with liver mets in Oct 2012 though we know they were there at my initial diagnosis in July 2012. So, over 6 years for me.
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JFL, we want to hear about that trip!
Raven, I was DX'd with Stage 4 de novo in Nov.2010, mets to liver & pretty huge tumor mess. Almost 8 years ago. Taxol & Hereceptin worked for a while, then onto hormonals for a few years until they didn't work. Taxotere, Kadcyla, now Doxil. Had brain surgery a year ago for a 3-cm sub occipital brain tumor. Have small lung mets, possibly bone mets starting (sternum showing something suspicious).
Immunotherapies are being developed so hang in there. And I like Therese's advice. I will read that again.
Thanks, Ladies.
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What are your liver fnction test lile, are they normal or high as kite. would love to hear . my get higher every week. 5.6 cm tumor in liver what´s happeneing to be.? Everything ws normal before stating cheom may 201
Raven
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Short update. IR called and he wanted a MRI on liver. I was able to have it done today! Next week I'll have a consultation with him about what he recommends. Things are moving fast. Pray that I will be able to have y90 or some other local procedure. Possibly a microwave ablation. Anybody had that one.
I'm leaving tomorrow for my reunion at the lake. I'm not ready, spending three hours to get MRI was not plan A.
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Hey everyone! Today is my appointment with my MO since my DX of mets to the liver. I am SO READY to get going on treatment. It feels like forever since I found out I was stage IV....this girl needs some action! Meds, chemo, rads, whatever.
I spent the Labor Day weekend eating junk food and having a bit of a pity party for myself but now I am ready to do whatever necessary to FIGHT.
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GrannaX- your one tough cooky you will do this...we are all here rooting for ya! Have a great short notice come with this nasty diease. Things always happen fast and now when they need us. But we have to patient and endlessly for results. wish. it were both ways!
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Good Luck Kelly, hope they get the stuff that works for you
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Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.Last Friday I had a PET scan to find out why my liver enzymes have been on the climb. The only thing I heard back right away was that there was fluid on the lungs, some of which I had drained today. *shudder*
I'm being referred to an oncologist at Fox Chase Cancer Center in Philadelphia. In June, the tiny little 1/8" lesion on my liver was looking better. As my doctor put it, my liver now looks like it belongs to a 75 year old man who's been a lifelong chain-smoking alcoholic. It is fully involved. The cancer has "exploded." Spine, both femurs, pelvis, right humerus and scapula, liver, both lungs, abdominal lymph nodes. He said he feels backed into a corner; he's out of ideas.
In addition, they removed nearly a liter of fluid from my left lung during the thoracetises this morning; there's nearly as much again around the right lung. I'll find out the cytology report on it tomorrow, but I've yet to get truly good news in the last year and a half, so I'm not holding my breath.
My MO is hoping that a doctor at a larger cancer hospital might have more access to trials and other treatments that he doesn't. I'll be getting probably two or three opinions and going from there.
I was diagnosed 18 months ago. Everyone said there are so many options, so many treatments... I'm young, strong, otherwise healthy, and so very optimistic... the odds were in my favor.
I'm trying to not lose hope, but... Of all the things I was prepared to hear today, "I'm out of options" was not one of them.
A Very Soggy Pincushion0 -
princess: sorry to hear your news. Glad you are going to a larger cancer center. Praying they find a treatment for you. Hugs!
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PrincessPincushion, I wholeheartedly agree with your MO's recommendation to get a second opinion at a big cancer center. They see many more patients and therefore have more experience in breast cancer treatment. They are most likely involved in many clinical trials. Have you had a biopsy since your mets exploded? Some people have discovered that their cancer changes characteristics over time and after treatment. For example, some people change from HER2- to HER2+. That opens up additional treatment options. Do you know how soon you will be seen at Fox Chase? It is hard to tell if you have had any chemo since your stage IV dx. I don't see any listed in your profile. I am sorry you are experiencing so much progression. I am sure it is overwhelming. I am lifting you up in prayer. Please keep us updated. We are hereif you need to rant or vent or just need to talk.
Hugs and prayers from, Lynne
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hartrish Thank you very much.
Lynne I see the new doctor on Friday afternoon. My MO's office had literally everyone behind the desk working on getting me set up with the earliest possible appointment. It was inspiring to watch them jump into action on my behalf.
I've not had any traditional chemo, no. Just Ibrance/Letrozole for 10 months, and then a disastrous 4 months on Afinitor/Faslodex. And no, no biopsy since the initial dx last February. That's one thing they're likely to do at Fox Chase, I suppose. I'm trying so hard to hold on to hope, but it's a struggle to keep my mind from the dark places.
PP
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PP, I suspect that the MO at Fox Chase will consider chemo. Many people on these boards are on one of the many chemo options out there. It is usually the direction treatment goes when someone experiences sudden, extensive progression. Of course, I am not a doctor, but with all the chemos out there, I would think that there are many treatments yet to consider. They will, of course, keep a close eye on your liver before and after choosing a plan. Don't give up hope yet. I am glad you were able to get an appointment so quickly. I will be thinking of you on Friday.
Hugs and prayers from, Lynne
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PrincessPincusion: I had a sudden 'explosion' of cancer in my liver in late April this year. I had 20+ lessons and almost complete failure. I was on Xeloda at the time but also just had an op due to recent dx of cancer in my femur which caused a crack at the top and I needed a pin and screw put in. My onc said there was only one chemo I could have because my bilirubin levels were so high. This was Cisplatin. Immediately this seems to do the trick and my bilirubin and also other liver markers came down quickly (16 down to 2.5 on first round). After 4 rounds my liver marker levels were back to normal, and a scan showed significant improvement. There are many chemo options. I'm now on Carboplatin as Cisplatin was hard on my hearing (but totally worth it). I am wishing you equal success with your next treatment.
Sarah
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PrincessPin - Yes to going to a large cancer center, and I agree with all that you are not out of options. Chemo can work really, really well on an aggressive outburst! My heart goes out to you...keep raging against the dying of the light!
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Oh thank you, Sarah and Katty! You give me hope that there may still be treatments for me yet! I'm still going to start moving forward with some of the end-of-life things I feel I want to do while I can, such as letters to my daughters for milestones I may miss, but I'll write them with the hope that not all of them will have to be delivered. I felt utterly lost and bereft yesterday at my appointment. It seemed like the worst nightmare ever, with the added horror of knowing I'd never wake up from it. But you give me hope that another doctor, another pair of eyes, another hospital, might have resources and ideas that my beloved MO does not have. It was so hard to see him heartbroken for me yesterday, but that's one thing I love about him - he truly cares, and he FIGHTS for each of his patients. I count it as a miracle that I was able to get an appointment with the next MO for tomorrow afternoon. Originally, they told the office staff next Friday was the first available, but I heard the receptionist say, "That's not soon enough!!" They're all fighting for me, which is oddly comforting.
So... On to doing things that bring me joy and fulfillment, taking my eyes off the darkness and fixing them on HOPE.
PP
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PP: keep up you hope and that's great news you have an appointment for tomorrow. I will be thinking of you.
I too started to get organised and we did our wills and power of attorney documents for finance and health. We have also just booked a trip back to the UK ip(and also Amsterdam) Its something I've been putting off for some reason. I've decided to stop saying no to doing things.
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PP, I agree with the others that a large cancer center is what you need! And not many doctors would admit they are at the end of their knowledge on this! Your doctor has done you a huge favor by sending you to someone else else who can do better! I hope things go well for you and that you get on a treatment plan quickly!
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Has anyone heard from Babs? I think she was to meet with her medical team on Tuesday to discuss possible treatment plans. She is probably wrapped up in those plans and spending time with her family. She remains in my thoughts and prayers.
Lynne
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Lynne, I have not heard from Babs but think about her and hope she is okay.
Princess, you have a lot of options left. Perhaps your doctor may be used to patients who are not capable of taking chemo (due to age or health status). It has been my observation that many, including myself, had a MAJOR mets explosion after Ibrance failed. My liver has never been in worse shape either before or after then, 2.5 years ago. Only a very small percentage seem to obtain a benefit from Afinitor - that treatment line should not count! In the 3 months I took it, it seemed to be failing everyone on the Afinitor thread. Everyone. Xeloda may be a good option for you - pill form chemo, no hair loss, powerful drug on mets and more tolerable than my Ibrance/Faslodex/Aromasin and Afinitor/Aromasin treatments. I am on my third chemo now and my quality of life has not suffered. I haven't slowed down my busy life a bit. Still in the closet re Stage 4 status at work and everywhere else and very few know of my diagnosis. Everyone thinks I am healthy. Keep us posted on what the consult at the large cancer center says.
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PP, hoping the larger centre finds a new treatment.
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