How are people with liver mets doing?
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I'm in one of those phases where I sort of want to enjoy this NEAD period and not think about cancer too much, and yet do not want to abandon my peeps here. Maybe I will be on less or posting less for a while. But anyone who wants to talk to me, please please do not hesitate to PM me even if I am not posting as much as usual.
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love you Shetland
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LFF..you deserve this good news. Enjoy thoae kids, even if you are running in circles!
Shetlandpony, go and put on those dancing shoes. See you when you return to BCO land.
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Love you, too, LFF.
Thanks, Sandi. I’ll be around, just not so much, so I might need a nudge if someone is wanting me to read and respond to something in particular. Covid has sort of decimated dancing for now, but I am having a grand time making my garden.
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Dear ShetlandPony, I hope you'll check in from time to time to tell us you are still NED. And in 2030 too! All the best and hugs, Saulius
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Leftfootforward- So happy for the good news.
Shetland- As I posted in another Thead, enjoy your life, but don't forget us. And pop in periodically and let us know how you are doing. I understand your need to get away, but also will miss seeing you post. We really are a community here.
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Absolutley, candy. I have been here for something like six years, and do not plan on leaving. There is so much value in supporting and being supported, in making friends with others who understand, and in sharing what we have learned. And yet the sheer volume of pain, fear, and sadness that can come with being friends with so many people dealing with cancer can be too much. I often struggle when we lose another sister. The counselor I talk with suggested I consider letting people know I might need to adjust the amount of time I spend here in the interest of my mental health and taking advantage of this NEAD period to do some things I want to do. It is a real dilemma because I really care about everyone here, but I am finite. Fortunately in a community like this there is always someone to reply, someone ready to help, so nobody has to feel responsible for everything. So maybe instead of reading through threads a lot, I can count on people PMing me when they think I might have some particular input.
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left foot forward
Hooray! 💃🏻💃🏻Happy dance for you.
De
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LFF, wonderful scan news for you to celebrate. Congratulations, you deserve it!
ShetlandPony, enjoy NEAD - you so deserve to, but hope to see you pop in now and then.
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MO called last night to report progression in liver, but bones remain stable in my latest PET, then today I met live with her and the PA to go over new tx plan. Letrozole just couldn't contain the beast, so now she's switching me to Xeloda + Tukysa + Herceptin. Rescan in two months. She's confident this combo will do the trick! We'll see; I sure hope so. Was told I have the PIK3 mutation and they have sent my liver biopsy specimen for FoundationOne testing. I'm very interested to hear what that reveals. And so it goes....
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Dear Bliss, wow, seems like you are in good hands, and I am sure you'll be back to NED soon. And you are so lucky you can get a "state-of-the-art" combo. I think in my country Tucatinib will be compensated in 2-3 years earliest:/ Saulius
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Bliss- Sorry to hear of your progression and need to change treatments. Hope this treatment is very successful and an easy one.
Grannax- Didn't you have scans coming up? How are you?
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Saulius, I think I am in good hands, too. My MO does keep up on the latest research and is proactive. I was planning to ask for FoundationOne testing when they told me they'd already ordered it. I was surprised and very pleased. I'm hoping my insurance will cover Tucatinib, but if not, I've investigated financial assistance with Seattle Genetics. The provider must apply for it, but I trust they'll be on board getting me approved for that, too.
Candy, thanks for your well wishes.
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hey anyone experiencing low grade fever at nights after Faslodex(fulvestart ) and xgeva injections or is it because of mild ascites or swollen liver or the cancer itself ?
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also to update moms liver biopsy getting delayed because of mild to moderate ascites (fluid ) .they it’s risky and can cause bleeding which may not stop .
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Faripari, It must be very hard to have your mom half a continent away and be so worried for her. I’m not able to weigh in on your questions but wanted to express my support for you. I hope her medical team in India is able to do the biopsy soon, so her next treatment can be started. 🌻🌻
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Faripari, I'm not on either of those drugs and I have had cycling chills and fevers for months. Started low grade but eventually became quite high & frequent fevers. After many investigations into infection, my MO concluded it was either the liver or the cancer itself.
Best wishes to you & your mom
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Fairpari, I have no answer to your question either, but want to acknowledge your post and lend support. What an unfortunate setback for your mom. Keep us posted on her progress. Hugs.
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Candy, you have a good memory. I had my PET on Monday. I got a copy of the CD and took it to my y90 doc. He texted me that night saying my liver looked normal, no hyper metabolic lesions seen. WOW a normal liver?!?! This PET was six months out from y90s. He's always told me the six month one looks better than the three month.
Then I get my report on my portal. It's four pages long. I can usually understand the reports but this one uses some different terminology. It sounds like Faslodex is still working on my lung and some lymph nodes in my chest. Some are reduced and some stayed the same. None got bigger. That's good, I get to stay on Faslodex.
Their description of my liver is a little confusing. The radiologist mentioned wanting an MRI. So my nurse is checking with my MO to see if she wants an MRI. I kinda don't want one. I'm concerned it might confuse the issue. And what if it did show up active tumors, there nothing that can be done about them locally. They might say try another chemo, yucky, I hope not.
I really trust my IR, I think whatever is there is dead or dying tumors. I hope that's what it turns out to be.
Shetland, I will find you! Lol
Farpari you are doing an excellent job in trying to get care for your mother. You've done the next right thing. Consulting with the Indian MO. He's the only one who can actually treat her until the airlines allow travel. And we don't know when that will be.💞
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grannax
Good news on scans. Y90 on my pet showed decreased size and no uptake in the liver tumors. They called it treated metastatic disease. y90 works!!
On the advice of the radiologist, I am having MRI abdomen with/WO contrast from now on for the liver because it shows more of what is going on! They found multiple tiny lesions that they will be watching. No uptake but suspicious. I did not have to change treatment. I will also get CT of the chest with contrast for the lung area in the same day. This satisfies all my teamBetter to know what you are up against with an MRI than let those little buggers hide in a CT scan. Hoping they dissolve and go away.
Faripari- I care that your mom is having issues. Stupid cancer! Stupid Covid! Keep doing what you do best which is research and support.
Bliss58-Great doctor/team!
Happy 4th to those in the USA!
Dee
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Grannax- Glad to hear you are doing good. Hugs.
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Hi all,
I'm sitting in the chemo chair and so enjoying reading these posts. I see so much good news! For some reason I can't get notifications from this site, so I lose track of how nice it is to feel Connected to “my own kind". LOL.
Also, while I'm kind of an obsessive researcher, hear so many innovative treatments on this thread. Keeps making me wonder what I might be missing.
Ive has 8 treatments in the last year. Currently Carbo + Doxil and hoping working. I've have very high cancer burden in liver.
For those of you have had y90 I would so love to hear more about your experience. I have been very interested but my MO extremely nervous it will “fry" my liver and prohibit future treatments. IR docs are willing - thy'd do one lobe at a time. Because there's so little data on breast cancer it's very hard to understand the actual risks.
Also curious if anyone with ER+ has experience with Trodelvy, which is probably in my future.
Hugs to all!
Leda
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Hi - I am new here... I recently found out that my breast cancer has now metastasized to the liver. I am really scared and I cannot thank you all enough for sharing your experiences - it gives me hope! My original breast cancer was in Jan 2018- IDC, Stage 1, grade 2, 1.5cm, 0/2 nodes, ER+ HER 2-, ocno type score 18. Treatment was lumpectomy, radiation and Arimidex. Now it has metastasized to the liver-go figure. Still trying to wrap my head around my new Dx. I am in the process of getting second, third, etc opinions. 2 oncologists want me to take Ibrance with Letrozole & 2 want Ibrance with Faslodex. Not sure what path to take, is one combo better than the other
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leadascout
How much is the tumor in your liver , is your liver enlarged /swollen ? What about your liver function test/enzymes ? Where else do u have lesions ?
My mother has a 16 cm lesion in right lobe of liver and several discrete small lesions in the other lobe of liver , her liver is enlarged actually giving her shortness of breath sometimes and her liver enzymes increased too , she has a small tumor in cervical vertebra in her neck which is new .
She currently underwent biopsy and waiting for results .
I don’t know for how many had it this bad and if they did so did they recover ??? Will it be more bad from here on or is there still chance to get better ? I sometimes get very weird thoughts , I wonder what my mom thinks , she talks to us abt living good and togetherif she goes forever and stuff which makes me more upset .
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Ssorry to welcome you to this club! I know it's a lot to integrate and assimilate, but once you get on your treatment trajectory, it will get easier!
Navigating doctors with different opinions can be so hard. We all have to become our own mini doctors!
About the drugs. Your docs are wanting to pair an estrogen blocker with a CDK inhibitor, which is now first line treatment for HR+/Her2- metastatic breast cancer:
- Letrozole is an aromatase inhibitor, blocks conversion of estrogen in the body
- Fulvestrant also blocks estrogen, but is considered a SERD (Fulvestrant is a selective estrogen receptor degrader (SERD) and was first-in-class to be approved. It works by binding to the estrogen receptor and destabilizing it, causing the cell's normal protein degradation processes to destroy it.)
- Ibrance is CDK 4/6 inhibitor which has a very notable competitor in Verzinio
So here's the deal.- The aromatase inhibitors (AIs) do cause a lot more side effects than Fluvestrant, in my experience. Others can chime in if they differ. You get lots of joint stiffness, etc. Fluvestrant was much better in that regard.
- Also, the Verizino/Fluvestrant combo has had particular benefit for liver metastasis. There's a study out there somewhere if you google. I might ask you docs about this combo as the mechanisms of action are similar to Ibrance/Fluvestrant
Hope that's helpful.I also have similar liver load to your mom. No other organ sites. 1 very small bone lesion that's been stable for a long time. And my liver, too, is also enlarged. But I'm 5'8" with long torso and I honestly think that helps. I don't have pain. My liver function is mostly normal too, though bili just went up very slightly, so we'll see. The liver is the most resilient organ in the body and we only need about 25% of it to survive, so I always try to remember that.
I truly think there is not one way this plays out for us. Cancer is so collective and individual at the same time. For me, I often feel like I could die within 6 months or could live to see my children become parents. I try to go step by step. I hope your mom finds the best treatment to knock things back!
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When I was diagnosed, it was because I had extreme shortness of breath. While trying to find out what was causing SOB, a CT scan showed widespread liver mets in both lobes..too numerous to count..starry sky appearance plus many lesions.
The tumor cells from my liver had traveled to lung arterioles and was blocking them. It is called pulmonary microtumor emboli syndrome. It cannot be seen by CT scan, MRI, PET or xray. I had a VQ scan which confirmed the problem.
I was very ill and in visceral and respiratory crisis. AC chemo was started and within 3 months, I showed improvement. Then my MO switched me to Ibrance and Letrozole which kept my cancer quiet for 3+ years. I was never offered the Fulvestrant monthly butt injections. I am glad as Letrozole is a daily pill and I had no issues, except vaginal dryness. Walking helped immensely with any knee aches. Plus, I would recommend drinking lots of fluids.
My point is, our bodies are amazing, the treatments when they work are life savers.
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SandiBeach57 your story inspires me and gives me hope!
So they indeed got your liver out of the woods, eh?
I did AC last summer, and it was the one chemo of the many I was on last year that worked. If I had been able to stay on it, who knows what would have happened!
I'm now on Doxil, which is in the same class, so I'm hopeful.
Yes to amazing, resilient bodies!!
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lafsunshine
You will find lots of good info here and on the other thread on liver mets and local treatments
Have you had a biopsy? If not, be sure when they do to get a molecular study like foundation one or Gardant 360 to check on mutations. Sometimes the cancer changes status so they should get ER/PR status, Her2 and even PDL1 to see what drugs can go in your bucket.
Finding what works can be tricky. But there is lots of research that says a cdk4/6 inhibitor with an estrogen blocker is a great first line. Verzenio has is benefits because it is every day and can get through the brain barrier. Since you were on an AI when it came back, many docs want to use faslodex to give the cancer something new.
I got my second opinion at MDACC. They are my main director I’d care and my local MO is giving me my meds at home. I go to Houston every 3 months.
There is hope!! Keep us informed
Dee
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who do you consult at MDA . my mom is apt at MDA too but currently stuck in india , we are trying to get in contact with the MO but no rply.
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Ledascout, SandiBeach57 & AlabamaDee - Thank you so much for your responses! They have brought to light things that I wasn't even aware of. Yes, I had a biopsy- it showed ER+, though it was never tested for HER 2. It is in the process of being checked for that now. They also want to do Tempus testing to characterize the cancer at a molecular level. I am having a liver MRI done on Monday, and they are trying to get a pet scan scheduled for me in the next two weeks. I have had a brain MRI, full body CT scan, full body bone scan & a mammo - by the grace of God, they all have come back normal!
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