How are people with liver mets doing?
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Hello all,
This is on behalf of my wife. She is newbie to Liver mets (today) but been been with bone mets since Feb 2016. She has been on Ibrance since then which clearly has stopped working. We are yet to discuss options with the doctor. Any advice welcome.
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letmuywifelive- so sorry to hear of your wife's progression. the good news is when it comes to live mets there are lots of options and many of us are doing well with them.
First, I suggest that you get a biopsy of the new liver tumor in order to determine if the type of cancer has changed. This is not an uncommon thing and can lead the way for your treatment plan.
next, you need to know the extent of the mets. If there is only one or a few small tumors you can decide between resection, ablation or some other methods of treatment for the tumors. If the mets are more extensive, then you will more than likely be placed on a new form of treatment.
Mostly remember to breath. It is really hard to hear that you now have a new met. But there are many options out there for liver mets. This board is full of long term survivors who have had many different types of treatme
best wishes
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Thank you leftfootforward. Your words of hope are really comforting. We are meeting with her onc next week and see what she says.
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LMWL - I would review Bestbird's MBC guide before you meet with your onc. It will help you line up your questions. The options for local control of liver mets are both dizzying and hotly debated. It takes a while to get your head around it and make a decision. Bestbird does good job of summarizing the space.
>Z<
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Thanks Z. I just got a copy today and will go through it tomorrow
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Hey ladies. I'm waiting on my next scan to see if I'll be joining you. Until then, do you mind if I ask some questions?
1) How were your mets found? Symptoms, bloodwork or routine scans, incidental finding?
2) For those who have had symptoms, what did they feel like? I keep thinking I have RUQ discomfort, but since I only started feeling if after I got my previous scan results, I'm not sure if it's a true symptom or my imagination.
3) What are some good liver specialists/centers? If these are indeed mets, they seem to be small (1cm and less) so I'd be interested in trying localized treatments.
Thanks. I'm oddly more freaked out about this then my brain mets. It seems that more ultimately die from the liver than the brain (of course that's likely because liver mets are more common...
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1) random finding. At normal 3 week mo apt. Dr decided to do US for another reason. Found liver mets
2) can't help. I had no symptoms
3) I live in WA so went to U is Washington for my liver specialists. They evaluated me upon my mets diagnosis said they couldn't help. Too many.
Went back 3 years later for my solitary tumor. They did a partial liver resection on me. Been clear ever since.
I had a consult with radiation oncologist about use of gamma knife. Also consulted an intervention radiologist about RF ablation.
I went with resection for several reasons, but I seem to be unique. Happy to share reasons why if you want.
In addition to local treatment I have been on systemic therapy, Xeloda, for 4 years. Have been NED except for the one tumor in 2015. It's working great at keeping liver and brain free of noticeable disease.
Hope that helps. Good news is there are lots of options for liver mets. I'm 4 years out.
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Bad at user names - If you have a bunch of small ones, systemic treatment may take care of them. I had 7 or so all less then 2cm and they were essentially gone in 6 months with systemic treatment. The are now not measurable and dormant in the PET scan. I like to think they are gone and the radiologist was hedging.
The point being that small mets are not necessarily the best candidates for localized treatment.
Liver mets that size cause absolutely no pain in my experience. I have no pain from cancer and all kinds of aches and pains from treatments. For me, there is no correlation between cancer activity and pain. However, I have no bone mets and no really advanced big tumors.
If I was going to do local control of liver mets, I would be looking at TACE. I know it is done in Seattle. I don't know where, but you have excellent resources in Washington State. I encourage you to avoid stress and use the resources you have locally.
In addition to standard cancer care, you have great complementary oncologists in your area. PM me for ideas.
We all have liver mets, but no plans to die from them.
>Z<
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Z, I LOVED your line, "We all have liver mets but no plans to die from them." Made me smile. Happy New Year everyone. I celebrated the new year and my 60th in Mazatlan and almost made it back without traveler's diarrhea
. I blame something I had in the airport. Feeling better today and will dig into Best Bird's guide.
Peaceful days to all
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my wife and I are really thinking of getting a liver biopsy done for her to understand if the original tumor type has changed. Can anyone advise how invasive this procedure is and how long it takes to recover, associated pain etc. ?
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I had no problems with my liver biopsy. An IR will numb the area and it is a quick in and out with a needle. I went to a holiday party later the same day. Next day I felt a little bruised but was really ok. As far as procedures go, it was an easy one for me.
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LMWL - I have a medical phobia so I need a valium for these things. As a result I did not go to a holiday party on the day of my liver biopsy. It's a trivial painless procedure unless the mere sight of a needle makes you pass out. There are a lot of needles and some are quite long. But it is really no big deal.
Hugs to you and your wife. As you get the procedures scheduled and the data coming in and the treatments lined up, everything falls back in place.
>Z<
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ya- I didn't look at the needle. But it was way better than the needle to my neck to biopsy my thyroid or the needles for my toe.
It's not a fun procedure but it is quick.
Hope you get the information you and your wife need. We are here for you
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oh and I had planned the company party which is why I went. I rented a room upstairs in. The hotel so I could rest when needed.
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I'm happy to hear the liver biopsy is a simple procedure. Luckily needles dont bother me.
I still have nightmares over a bone marrow biopsy I had, it was the worst procedure I have had since being dxd with BC.
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Thanks ladies. This puts my mind at rest. My wife isn't scared of needles and quick procedures so I am sure she should be fine when we discuss that with her MO next week.
She is a lady with great courage just like you all here. Very few people, who are not affected, actually realize what you go through every day.
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My biopsy was fairly easy as well. I had about a half of minute when there was uncomfortable pressure in my side with the needle inserted. Not really pain and it was over pretty quickly. I always have questions on localized treatment for liver mets too as my Onc seems to think once you have more than a single one there is no procedure available. My mets were found right after my great biopsy when they did a PET to check everything. I have not had much pain but every once in a while I will get a sharp fast little pain for just a second? Sometimes my right side feels "full" or a little bruised. Again not pain per say just off.
Thanks for the TACE link Z. My New Years Resolution is to get moved into my new house and get going on the research.
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I am repeating the list of local treatments for liver cancer from Bestbird's Guide to MBC as it is impossible to keep straight without a cheat sheet. Bestbird goes into some detail on each in the guide and that is the place to start. I hope everyone here has the latest version of the Guide at their fingertips.
Many people do have local treatments for multiple liver mets. I have seen strong arguments for and against.
Here is a blog by one tough lady who got TACE done in December from a well know center in Germany. This brave lady had very aggressive MBC and a liver chock full of mets. I am on the edge of my seat waiting for her next post as she is headed back for the second treatment to the second lobe in January. My sense is that in her case she just had so many she had to reduce the tumor load to preserve liver function.
TACE is done in Germany but common here as well.
Ablative Therapies- Cryotherapy
- NanoKnife
- RadioFrequency Ablation (RFA)
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I just wanted to check in with everyone. Mattie, sorry about the recent progression, keep us updated what they decide next. Freya, I think having trust and confidence in your onc is a very powerful thing, something I don' t have right now.
I have a 2nd opinion today at a major center after my failure on Ibrance and the discovery of being both ER/PR and the addition of AR positive. I will let you know what they say!!
Hugs, Alissa
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Alissa,
Fingers crossed!
Love,
Patt
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Alissa,
Best of luck and please keep us posted. My wife's cancer progressed to liver as well while on Ibrance. So I am very interested to know what your MO suggests
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Thanks Z, as usual, for all the information you share so generously! Best wishes for you Alissa!
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I just thought I would check in with you guys after my 2nd opinion yesterday. The new oncologist was very nice and very knowledgeable. She had 3 clinical trials in mind for me. The first one was quickly rejected. It was the only one targeted and the newly found Androgen, but was only in safety ie phase 1. The other 2 we are considering right now. The one called TRINITI-1 does not open up until 01/20. It is ribocib plus another AI. It seemed she favored that one. The other is the SOLAR-1 trial that you need to have the pik3 mutation for. The testing for that could take 1-3 weeks. I have already been off treatment for 5 weeks after Ibrance failure and then the lumpectomy and liver biopsy. I meet with my regular oncologist tomorrow and hopefully will get some answers. I threw it out on one of the fb support groups and found 3 people on ribocib doing well, so that helped me get some sleep last night!!! I hope everyone else is doing well today! Hugs, Alissa
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Hi Mama2twinsplus2,
Did your new MO explain how she expects Ribociclib to work when Palbociclib failed ? Also what is the AI she has in mind that will go with Ribociclib ?
My wife is in a similar situation as you, so I am very curious to know.
Also, best of luck in finding a trial that works for you. My prayers are with you.
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Just received the CT report for my wife.
"At least 10 new hypoattenuating lesions noted throughout the liver, the largest measuring 1.5 cm in segment 2/3 (7/64). Additional lesions are indexed on PACS. No biliary duct dilatation."
No sure how bad this is. Any comments welcome.
Regarding her bone mets the comments are :
"Overall stable appearance of diffuse sclerotic osseous metastases. No pathologic fractures identified."
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letmywifelive- my liver was full of mets when I was diagnosed with metastatic disease. Systemic therapy ( xeloda) took care of it. Others have done another form of systemic therapy and done well as well. So there are options. Sounds like local treatment might not be an option at this point but always ask.
I still recommend the biopsy of at least one to know if the type of cancer has changed.
Thinking of you and your wife. Hoping that you find the same type of success I have had.
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LMWL -
I think they reach for the chemo (like Xeloda), even when you have hormone receptor positive cancer, when the tumor load is considered high. I presented with liver tumors pretty much like your wife. The Tumor Board, said I was borderline and could go with either hormonal treatment or chemo. I chose hormonals but once strategy is to go on chemo to get the tumor load down and then go back to hormonals. There is some argument that this might give your wife more time on the hormonal. Lots of options for you.
Interested in what the MO says.
I don't think anyone knows whether ribociclib can be used as a second line CDK4/6 inhibitor for women who failed Ibrance. I am guessing that is the point of the TRINITI-1 trial that was suggested to mama. FWIW, my onc is hesitant to continue the Ibrance if it fails me, but does think of ribiciclib as a second line treatment for me. I am scratching my head over this because ribociclib and palbociclib appear to do exactly the same thing. Interested in how you play that card.
>Z<
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CT report in, still shows about the same as last time - hypodense areas, same size, could be mets or not. I'm taking that as a good sign that a) it's something besides mets, or b) it is mets but Tykerb/Herceptin is working to keep things stable.
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LMWL-
It looks like the arm of the trial I would be on would be
Study of Ribociclib With Everolimus + Exemestane in HR+ HER2- Locally Advanced/Metastatic Breast Cancer Post Progression on CDK 4/6 Inhibitor
I am in a facebook support group and there are 2 other ladies on Ribociclib, but in different combinations. My onc seemed confident in this as a 2nd line of treatment also. I asked about Xeloda or Faslodex, and will be discussing them with my local onc today, but Ribociclib seems to be showing a lot of promise, even as 2nd line. I will ask a lot of questions today and report back. Hope everyone is well today!!
Alissa
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Thanks Alisa. When you talk to your onc, please try to understand the reasoning behind having hope on Ribociclib since this is also a CDK4/6 inhibitor. I will be most intrigued to understand this and will ask the same thing to my wife's one as well.
My prayers are with you and with every every lady in this forum that are affected by this awful disease.
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