How are people with liver mets doing?
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B-A-P, I am raising my hand as one who has gotten back to NEAD. I also want to suggest that the onc should offer a biopsy to check the current ER and Her2 status, and for sequencing the tumor (Foundation One, Guardant, Caris etc), to answer the question of what could be causing this more aggressive behavior and how to address it. If the test shows a reason for the resistance to your current hormonal therapy, it might be as simple as switching to Faslodex plus Ibrance or similar. If it shows the cancer has switched to Her2+, then herceptin or similar ought to whack it good. New PI3K mutation? Piqray is there. Xeloda is also a pretty typical choice. And so on. Sometimes, depending on how your liver looks, the onc will want to hit liver mets hard with something like Taxol chemo for a few months, and then switch to something like the above for maintenance. Progression is scary, but after you have settled into a new treatment, it may start to feel somewhat routine again.
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Shetland,
Thanks for this. I'm gonna write this all down to see my options. I know that I have to advocate for myself because I had to do my own BRCA testing otherwise it would have taken a year. My onc is on sabbatical so I have to discuss this with her "fill in" I can't get in until the 9th which is absolutely torture. This is all good info to have and I hope they are willing to do that for me ( the sequencing and such) I am living in a small province and they aren't as advanced but I'm hoping there is some way to access all this instead of going in blind. My nurse did try to assure me that it is unlikely that a ER/PR+ status especially so strong, would have changed to negative. Thats my fear. I know it's still possible that it changed, but I've got to hold out some hope somewhere. It is obviously very aggressive and I am hoping I have some pretty solid options. I'm lucky in that currently all I feel is tried ( which is my usual anyway). What a way to cap off 2020 and my 33rd birthday.
I'm trying to stay hopeful. As we know, waiting is the hardest part... especially without a game plan. Getting to weds is going to be a feat.
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BAP, I had fast progression to liver after 3 years NEAD.
I am on Xeloda now 9 months and liver quiet from Sept scan. Liver enzymes and TM have normalized.
With a fast growth in liver..systemic chemo should be considered. Also agree with SP..bx and F1 to see what you are dealing with, especially if your hormone markers have changed or have developed mutations.
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B-A-P, are you in Canada? I don't think any province is covering genetic sequencing of tumors yet. I'm getting my liver met done because it was part of my trial - Roche offered to pay for it if I left the trial due to a progression. Just FYI, Foundation One just became avail in Canada in Sep 2020. If the province won't pay, you can self-pay. They offer liquid biopsy as well as the one done on the tumor itself. If Roche hadn't come through with the payment I would have gone for Foundation liquid and paid myself.
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B-A-P, for a more complete list of possible next treatments, you can get a copy of Bestbird's Insiders Guide to Metastatic Breast Cancer:
https://community.breastcancer.org/forum/8/topics/831507?page=5#post_5488394
I think it is so valuable for you to hear from other Canadians about what is available. Even if they don't do genomic sequencing, they would check ER and Her2, wouldn't they? What I am wondering is whether Her2- could have changed to Her2+. Especially since you say your Her2 - was decided by FISH, which is the more sensitive test they use when the IHC test puts Her2 in the equivocal range.
My guess is that if this progression is too much too fast, you could be given a taxane IV chemo, followed by Faslodex plus or minus a targeted therapy. If your liver is not in danger, then start with the Fas etc. (Now that I see you had 5 F-U two years ago, I doubt Xeloda would be offered since it is related to that. But I'm not an oncologist!)
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B-A-P sorry to hear about the progression. As others have suggested, there are plenty of options available for you. Hope your next treatment gets you to NED.
I had a PET scan yesterday and it showed progression in bone mets and liver mets, plus new lesions in both areas. The SUV numbers have almost doubled. Next week I am getting MRI of the liver to see the sizes and check if my liver ablation has worked on the single lesion (not that it matters). My ALK PHOS number has sky rocketed! In all, not a good report.
My MO wants me to start me on Doxil next week since she feels it can hit the liver mets fairly quickly and do the immunotherapy at a later point. This is my 12th line of chemo and my MO said that I am running out of options. In the past 3 months, these metastatic lesions have become so aggressive. This is scary.
I know some of you have been on Doxil, so I'd love to hear your experience on this drug. Is this as bad as Adriamycin (Red Devil)? I already have GI issues due to ulcer.
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I am in Canada,
Moth, Very good to know,. I will ask about foundation 1 , I will pay if I have to. I think I really need the entire picture so I can get the best treatment possible. It's all very scary. I know iv'e done this once and I can do it again. I have to get into that headspace. But the shock of it all is hard especially now with covid on the go.. I guess one day at a time is the best course of action and then we go from there. hopefully with good results.
Shetland, I would imagine I could have the tumour tested for the markers at the very least. two years ago the met was so teeny tiny and in an unreachable spot. Now that the largest is 4 cm, I'm certain something can be tested.
My head is literally spinning. I'm hoping I stay an exceptional responder.
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S3K5 - sorry results are so scary with aggressive tumors. I cant see your whole profile but looked like you were doing so well (ibrance 3 years, xeloda 3 years) until 2019 and now you are on 12th line chemo? Did they find any mutations on biopsy that could be driving the aggression? Anything they can target?
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I also have very aggressive liver Mets. My liver was clear in May, in Sep, they found three spots with 0.7 cm is the biggest, then in Oct, just one month later, MRI shows multiple spots, with the biggest one from 0.7 cm to 2 cm, another one from 0 to 1.5 cm. IBrance - Folsodex not working for me at all, my liver tumors were growing such high speed while I am taking IBrance. I just had a biopsy, they are now changed to ER- PR- Her(1+) from ER+++ PR+++ Her+original.
My onc think I need chemo which will react faster than target therapy such as PARP inhibitor. She put me on Carboplatin every three week, Taxol weekly. Today I just finish my third Taxol, my tumor marker is continue shooting like a rocket since chemo , I don't know if it means the cancer cell is dying and release their dead body to the blood , or it means my tumors are still growing.
B-A-P, I am sorry for your progression, you are not alone. My treatment plan is here for your reference. But I don't know if my chemo regimen will work or not. I don't know how often I should check with MRI.It is scary , I learned a lot from everyone here, this is my first post in this thread. Thank you everyone, you all very strong
Cyn
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CYN, I have a liver MRI every 3 months with bone scan every 6 months.
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Dear B-A-P, uhh, I am sorry to read you go through all of this:/ Again, probably people are tired from me being optimistic but... was it an MRI or CT/PET that you did? Can someone else re-read your scan? NED and then suddenly 4 cm after only 4 months...? Yes, it can happen but also... in 2018 an MRI report came to us with progression in multiple liver segments and made us burst into tears - then the same day we went for an ultrasound, and they found nothing there, then did another MRI and liver was absolutely clear. Up to this day we don't know what happened - maybe the radiologist read MRI of another person, maybe she read what was not there... We asked our MO what happened but she was reluctant to answer (at NCI they stand for their colleagues and I can understand that). This example just shows that these things happen. I am also pretty sure you can come back to NED, as you reacted so well to the first line treatments if progression is confirmed. For now a plan is very important as soon as possible. Waiting really kills. I would go for re-reading the scan, then maybe ultrasound to confirm, then biopsy, then Tempus/F1, then treatment plan. I don't want to give false hopes but I also really believe you will come out of this stronger than ever before. Saulius
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Grannax, Thinking of you
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Hi Salius,
it is quite suspect isn't it? Doesn't make sense. I know that in the beginning 2 years ago, my met was so small that it didn't register on CT so it is either the same scenario as last time and my last ct didn't pick up on it or something is aggressive. I just spoke with the social worker to try and get to next weds. I am going write all this down . She ( social worker) advised not getting too ahead of myself bc we don't know what we are facing just yet and it's easy to think the worst. Considering your mix up.. it'll be interesting to have follow up tests and see what's really going on. The waiting is tough and I've literally tried to get in sooner, but with the weekend coming up and me living in a small place, it's nearly impossible to force something else sooner.
I have a question for anyone really as shetland has pointed out. My her 2 status was a 2+ on IHC but negative on FISH. The score on the FISH was 2. Which in my research is borderline with a positive being 2.2 or greater and then less than some other number ( my brain is scrambled) . The chromosome 17 score is 1 which I don't know how to interpret
So is it possible with those her 2 scores that I might just be positive now ? or is that unlikely? I'm holding on to hope that my receptor status isn't all negative .
sigh
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B-A-P, not good news for your birthday. I'm so sorry you're going through this at such a young age.
I was NEAD for 4.5 yrs, then sudden progression to my liver 3 mos after a clear CT. My liver was biopsied and came back with the PIK3 mutation. Before, the bx, I took Tykerb, but it failed. Then Xeloda, but it failed, too. I was originally dx Her2+++ and 95% ER+/PR+. The liver bx showed I'm still 95% ER/PR+, but now Her2- by FISH (Her2+ IHC+2). My MO thinks the PIK3 is driving the cancer, so I'm now on Piqray. My initial SEs on it were terrible at 300mg, but now on 250mg I'm so much better, but that's a whole other story. The good news, my CT last week showed my liver mets are stable and mediastinal node is clear, so I think the Piqray may be working. I'll start my 2nd cycle tomorrow and I also do Faslodex shot with no problems. I'll bet you're still highly hormone positive.
About Foundation One, you might check with their Foundation about cost and funding. I had a $786 amount due after insurance. I called to set up a payment plan. The agent offered to see if they could help me and ended up wiping out the $786 I owed. Perhaps they can offer you something if you do end up self-paying. Good luck and best wishes.
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Saulius, I always welcome your optimism. Why not ask for a re-read of a report that is questionable or scan for further information? Your wife's issue is a perfect example. I think you have given sound advice. It took a CT an MRI and finally a PET to dx my liver mets.
Thinking of you Grannax and hope you're healing well.
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Hi liver mets community! I introduced myself on the "share your story" thread, and Shetland Pony told me to stop lurking in here and actually say hello.
I wish I could go back over all your stories and figure out what's going on with you, too, but I hope you'll forgive me for just jumping in. I look forward to learning more about you and your struggles (and wins!) and providing support to you as part of this community.I was diagnosed with a recurrence of my breast cancer about 2.5 months ago. I was having a prophylactic oopherectomy and the surgeon saw the liver and immediately took multiple biopsies (yay, doctor). The liver was visibly riddled with tumors, which a PET scan later confirmed. Basically, the liver is a giant glowing ball of cancer. Fortunately it's JUST in the liver at this point.
We are possibly reaching a turning point in my treatment (already!?). My onc ordered a follow up scan, even after only 2 months of treatment, since I've developed fairly significant ascites. She was planning on waiting around 4 months before scanning. The scan results were indeterminate, so I'm getting a PET on Monday. However... she's already talking about moving me from gemzar & carboplatin to a new drug -- Eribulin -- depending on what the PET says.
I'm concerned maybe we haven't given these first drugs enough time to work, although I realize it's important to find something that DOES work before wasting too much time. The cancer is still confined to the liver and one inflamed node is no longer visible; however... the tumors in the liver seem to be slightly larger and have some sort of thickening at the edges. Anyway, we'll know more Monday. She is deferring the treatment I'm supposed to get Tuesday until she has more information.
Questions for you experienced liver mets ladies:
1) How concerned should I be with the ascites? They did a paracentesis on Wed, which did almost nothing, unfortunately. But, my liver numbers have stabilized and started to go down (good sign) but then all of a sudden, the ascites popped up which I gather is concerning. Everything I read about ascites sounds REALLY bad (stay off the internet, ha!).
2) I feel like the Eribulin is kind of the "whelp, the first category of chemo didn't help, so we're going to move on" sort of drug. Any experience? I feel like there should be more drugs to try before heading to that. Especially since I'm tolerating this chemo well, and I have had issues with peripheral neuropathy in the past, which is a fairly common side effect of Eribulin.
3) Where to go for yet ANOTHER opinion, if that's appropriate at this point. I'm in Grand Rapids, MI and I already did a second opinion at U of Michigan. I'll be consulting with that doc again. Is there a point at which getting ANOTHER opinion makes sense? And where would YOU go, out of the "big deal" cancer centers?
Thank you for reading through all this. I'm sorry for immediately letting loose a barrage of questions, but I'm a newbie and I could really appreciate the perspective of veterans. I would appreciate any insight you can share. Thank you so much!
Lu
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welcome LU77
I want to post this article about eribulin that just came out. Hopefully others can help you with your questions. It’s s very supportive bunch here.
Increased Overall Survival in Patients With MBC and Liver or Lung Metastases Treated With Eribulin
Dee
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Hi Lu!
As Dee said, we are a very supportive group here. I hope you find this site helpful, and ask away. Many will provide you with their thoughts.
My first question is this: since you had biopsies recently, did your MO send away for genomic testing to see if your cancer has mutated in any way? This is becoming a big deal in breast cancer, especially in selecting treatments. I would be asking by doc about that. For example, some specific mutations are addressed by targeted meds. That's always a good place to start evaluating treatments.
It does sound to me, though, that maybe your MO is trying to slow down your cancer, and that's why she/he is heading for the chemos first, and then will look at other drugs later. Still, if you've had biopsies and if your center has preserved those, it's possible that you could still get a genomic report. Types of these reports are Foundation One, Caris, Tempus, and others. Ask your doctor.
As for a second opinion, or a third, you may be better off in Michigan or, if you can travel, at one of the heavy hitter centers elsewhere in the US. To look for NCI (national cancer institute) centers, go to this link:
https://www.cancer.gov/research/infrastructure/can...
That will give you the list of all NCI centers in the US.
In Michigan, these two are listed: have you looked into the first one? You said that you went to the second.
The Barbara Ann Karmanos Cancer Institute
Wayne State University School of Medicine
Detroit, Michigan
Comprehensive Cancer CenterUniversity of Michigan Rogel Cancer Center
Ann Arbor, Michigan
Comprehensive Cancer CenterAnother approach to finding a person to seek out for a second opinion is to look at some of the published studies about your type of cancer -- and then see what names keep coming up as authors. You can try and contacting them to set up a consult.
Hope some of this info helps. Good luck. Keep asking questions -- it's your life. Studies have shown that persons who take an active interest in their care, do research and reading, and question their doctors do better in the long run.
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Lu77 I am on Erubulin after failed Ibrance/Letrozole/Faslodex - 1st line. Xeloda- 2nd line. Doxil - 3rd line.
Erubulin is the first thing to work since I/L/F(which only shrunk everything for 3 months and failed at month 4). I wish I would have started with Halaven/Erub. Instead of wasting time with Xeloda and Doxil.... There is a thread on here for info on it I would post any questions you have about it, in there. You could also PM me if you want I am on cycle 7.
Dee thanks for that article about Halaven.
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Lu77 , based on your profile it seems like you were PR+ in 2015 and now it shows PR- ? As BevJen has suggested, genomic testing would give you more options for targeted treatment. The insurance should cover this, but it is a process.
I have extensive bone and liver mets. I have gone through multiple treatments and recently found out that my cancer has mutated to triple negative. So I will be starting Doxil next week. My MO wanted to start me on Erubulin/ Halaven since she has patients who have seen very good response for their liver mets. I have neuropathy in my toes, which got worse on recent treatment. So Erubilin will be my next line of chemo.
Based on my conversations with my MO, I think you are on the right track to get the liver mets under control. A second or a third opinion wouldn't hurt. My oncologist is from MSKCC, New York city. She was my second opinion last year.
NicoleRod, how was your experience on Doxil? Was it tolerable for you? I am so glad Halaven is working for you.
BevJen, are you on Ibrance/Faslodex?
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Lu77, my wife developed ascites during her successful treatment with xeloda. I believe the ascites was a response to the massive kill off of cancer cells. Possibly an immune reaction to all the dead cells that were surrounded by living tissue. Eventually it stabilized and went away, sticking with the continuing treatment. As her tumor markers fell, her ascites got worse. They gave her a combination of 2 diuretics (two, because one offsets an imbalance caused by the other) and a heparin based injectable anti coagulant. The had a line installed so we could drain her at home. Initially we were draining close to a gallon in 5 days.
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Husband11, did the ascites eventually go away completely?
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Moth, it appeared to go away completely for at least 2 years. She has a tiny bit of it now, that sometimes shows up on an MRI. No more drainage required after it went away back then 3 years ago. She saw a little ascites on an MRI around 3-6 months ago, so she is on half dose of diuretics again.
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Thank you Husband11. That's very encouraging as someone once told me it was kind of one of those end stage things that you don't come back from, kwim? I really appreciate knowing it's not always dire. I don't have any right now but I'm trying to look ahead at future issues.
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S3K5 yes doxil was very tolerable but didn't do a darn thing...
Changing from PR+ to PR- is very common when going from a stage 0 to stage 4...it happened to me and none of my genomic info changed except that.
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S3K5,
You asked which drugs I am on -- I am on Ibrance & faslodex. I've recently switched from the 125 to the 100 on Ibrance. It made a difference in how I feel for sure.
But ---- my tumor markers are heading in the wrong direction. Interestingly, I did some research that said that microwave ablation or other stuff can "irritate" (my words) a tumor and then it will shed more cancer cells. As you know, I've got to have a repeat ablation next Friday, 12/11. I'd like to stay on Ibrance (especially at this reduced dose) for longer, but I don't know what my MO will say. My next blood draw will be Jan. 5, so I guess that, and the CT scan I have on Dec. 23, will be the two deciding factors.
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S3K5 yes doxil was very tolerable but didn't do a darn thing...
Changing from PR+ to PR- is very common when going from a stage 0 to stage 4...it happened to me and none of my genomic info changed except that.
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Sigh.. I'm feeling very down. I just sent my Report to my ND who's going to hook me up with a ND oncologist ( just for supportive care through treatment) . The " impression" Section mentions extensive Metastatic disease. I just can't wrap my mind around it. I don't have any symptoms . This makes no sense.
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Hang in there B-A-P. Once you get a proper chat with the ND Onc ( not sure what the ND stands for to be fair), you’ll hopefully have a better idea of where you are. This thing is really great at making you feel like you’re on a never ending rollercoaster. Down big time today, but maybe better in the next few days?
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Has anyone heard from Grannax? She was supposed to have her second liver ablation this week, I think?
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