How are people with liver mets doing?
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I greatly appreciate what you have all shared with me, you have given me a lot to think about.
I think the first thing that needs to happen is to have the biopsy and find out just what is going on in my liver. I don't think it was fair of her to try to push chemo on me without having the information from a biopsy first. I was disturbed by that, and your responses show I was right to be disturbed by it.
I will probably ask about the Y90/SBRT/ablation first, so I can put off making a final decision on chemo a little longer.
You are ALL such a blessing!
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BLMike – When I was on Abraxane, I followed each infusion with 3 days of neupogen shots to keep my ANCs and WBCs high enough for treatment. It worked and I didn't have any side effects from the shots. My husband gave me the shots at home.
Candy – PARP inhibitors can work very well for patients with somatic BRACA1 or BRACA2 mutations. A friend of mine was on Olaparib for about a year with good success. I have CHEK2 an FANCA genetic DNA repair mutations (similar to BRACA) and was on a trial of another PARP inhibitor, Talazoparib, for about a year with good success. In general, PARP inhibitors are easier to tolerate than IV chemo or even Xeloda. I had the PARP inhibitor as a monotherapy, but I believe that there are now various trials combining PARP inhibitors with other treatments. The challenge is always overlapping toxicity, the main one being lowering blood counts. Since you don't have an ESR1 mutation, Fulvestrant could be a good option. I would ask your oncologist if the change to ER- would make you less likely to respond to Faslodex. Also would you combine it with something else (verzenio or everolimus)? I had hand/foot syndrome in my feet while on Xeloda, but felt great otherwise. It can be managed with dose reduction or a 1 week on/1 week off schedule. Given that you have liver mets, I might favor Xeloda or the PARP inhibitor to hit it hard. I have tumor mutational burden of 8 which is considered intermediate. I may try a checkpoint inhibitor at some point (on a trial with another med?), but it would not be my first choice. Best of luck making your treatment decision! You have many promising options left. I'm also a fan of microwave ablation (I've had two) since it does not damage the healthy liver tissue.
Moth – Thanks for the pointer to the thread on interpreting genomic tests! I didn't know it existed.
BevJen – I agree with ShetlandPony, Sandi and Grannax. New symptoms need to be investigated further… "anxiety" is a common diagnosis when doctors don't know what's causing a symptom and it's often not the underlying cause. I hope that your PT will work wonders and that you'll be home soon!
Terr-C – I'll just echo what others have said… don't assume that you will not have a good quality of life on Xeloda or IV chemos. You can always try a treatment and dose reduce, put more space between treatments, or even go off it if the side effects are not acceptable. Xeloda can be very effective in the liver and is taken as pills at home.
Macbookair2018 – I'm sure that your mom's NP's heart is in the right place, but I believe that this information should come from a discussion with your mom's medical oncologist who is almost always much more knowledgeable. The NPs that work with my oncologist are excellent at symptom management, but they do not have nearly the expertise of my oncologist and frankly have given me incorrect information at times. I'm glad that your mom has such a caring daughter advocating for her!!
Sorry if I missed something. This thread moves FAST!!!! Hugs and best wishes to all! Theresa
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Thanks theresa45. Polly's MO has talked about some kind of a patch to keep her ANC/WBC up, but we'll ask about these shots also. Hopefully, her ANC/WBC can recover to restart the chemo with either the patch or the shot to boost her white cells.
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theresa45,
Thanks for your comment about anxiety (and other folks who have mentioned it too.)
in this instance, I think the doc may be right. I am a very anxious person, and this whole adventure has been an anxiety producing event. I started on the low dose Xanax last evening, and I'm going to give it a whirl.
I'm also being treated at rehab by a physiatrist who is also a pain management specialist. His views are very different from other physicians, so I don't think he just throws the spaghetti at the wall to come up with a diagnosis.
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Thanks guys for all the postings and advise.
I just got off the phone with my MO. I wanted to post while it is fresh in my mind and to get my own thoughts straight. This is so confusing.
So the liver tumor they biopsied (I have 4 tumors and they biopsied 1) showed ER- PR+ HER2-. But with heterogeneity, another tumor could show ER+ still if they checked it. She said less is known about ER- PR+. Said hesitant about continuing to use hormone therapy, but then went to say may continue to use the AI in case the other tumors are still driven by hormones. With my CDKN1B mutation we may circle back to a CDK 4/6 inhibitor later-- maybe Verzenio next time-- if insurance would agree. She did mention antibody drug conjugates--- I forgot what those are and Googled that after the call. Those are used in triple negative cancer. So maybe in my future??? But not now.
******So the plan is rescan in June (3 month scan, no date yet for scan) and see amount of growth then. And maybe move to a PARP, with or without an AI. I mentioned fulvestrant. She said insurance will not approve a PARP and Fulvestrant due to both being expensive. That I could do the AI out of pocket if needed as it is a cheap drug. She said cannot do a PARP and a CDK together as both hit the blood counts hard and that would be too much on my body-- I was thinking about continuing the CDK with the mutation shown on the biopsy.
I think that is it.
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BLMike - I believe that the neulasta onboard device delivers the same bone stimulating agent as the shots. I don't know why my oncologist suggested the shots over the automatic patch device I imagine that it is less complicated and more reliable to have the patch deliver the medicine automatically the next day. If you don't have someone to help you remember and administer the shot at home, then you may have to make daily trips to the infusion center for the shot. I've heard a few people say that they get bone pain with the onboard device, so you could ask about that. It may be a larger dose of medicine at one time. Some people take Claritin to prevent the bone pain. I did not have bone pain with the shots.
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Candy I am glad you got some answers and spoke to your MO. I don't have any advice regarding treatment I am sorry...but I am sure the other ladies here will have a lot for you...just wanted to say I am thinking of you.
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Dear Terri-C... your QoL was good (and you are stage IV for 7 years already), so I don't see any reasons why you would not continue to feel well, even on some new regiment. Knowing you were responding to treatments for so long tells me you'd probably respond to others as well. Biopsy the tumor, get results, treat it. So many options out there. To be frank, you'd feel very odd in hospice - hospice is not for healthy and strong people like you! Hugs, Saulius
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Sualius I believe you are right about hospice..plus I was told they will only take people when they really need it...when they are really in bad shape..(to put it mildly)
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Ok guys, I am going to put something out there that could affect all of us. I may be all wrong in my reasoning as I am not a doctor and all this is confusing.
So most of us with MBC are ER+ PR+ and hormones are feeding our cancers. We go on hormonal therapy to block the hormones and, say, a CDK inhibitor. We progress. We are taken off those meds and moved to the next treatment-- a PARP, or Piqray or immunotherapy or IV chemo, etc etc. But our cancers are not black and white. With heterogeneity (diversity), say in my case with 4 liver lesions, 1 lesion may be driven by ___ and another lesion by ___. Same with all of us.
So my thought is, why not keep the hormonal therapy for the other lines of treatment and change the CDK, PARP, Piqray, etc. If by stopping the hormonals the cancer says "hey they opened the food lines again" and then the cancer grows.
Am I crazy in my thoughts???? Someone with a more scientific mind and more understanding please explain why the hormonals are not continued.
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Candy that is great question and maybe Moth can chime in or someone can get Cureious to chime in but I do know 1 thing..and that is that our bodies could not handle endocrine therapy Ibrance/letrozole etc..and chemo at the same time... I believe I even read that a while back somewhere (writting by a breast cancer MO).....
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Your question is a good one Candy and it seems that MOs vary in their approach to treating the cancer over the long haul. I have seen some that have been on a couple of types of treatment at the same time but it's unusual, likely for the reason that Nicole points out. In my case, my MO likes to go back and forth between endocrine therapy and chemo in an effort to avoid full hormone resistance. My treatment has gone from Taxol to AI/Ibrance, Xeloda, Faslodex/Verzenio, back to Xeloda and now he is considering switching me to Aromasin (need to chat with him about adding in Afinitor - although it seems nasty). I get the strategy, take breaks from it and keep going back to hormone treatments as long as we can keep everything more or less under control. If things start to go sideways? Time for the big guns!
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Sadiesservant- So do you get a biopsy with each move in treatment? This is my first progression and so we biopsied. Found that ER flipped from positive to negative (at least with 1 lesion). So do we biopsy again next progression to see if ER flipped back to positive?
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candy, gain of markers is way rarer than loss. I have a study bookmarked somewhere i will dig out later of you like but basically we tend to lose markers so my understanding is repeat biopsies may be less useful as time goes on.
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Moth- "markers"? You mean ER/PR/HER2? Or the mutations of BRCA/PIK3CA/ etc? So if you mean ER/PR/HER2 then if I am ER- now it would be rare to change back to +? Then that would mean I am done with anti-hormonals and no use re-trying them later?
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No, Candy, I've never had a tissue biopsy since my original diagnosis in 2001. The tumour cells were checked when the pleural effusion appeared in late 2016. At that time I remained ER+ PR+ HER2-. My onc is basing his decisions on his years of experience and my clinical response. In Canada there is more of a reluctance to put patients through invasive procedures and until recently, I didn't have anything easy to biopsy. The pleural lining and bones are tough to get a decent sample. I asked about the liver but he didn't see the need as he wanted me to go to chemo regardless and he isn't wild about taking chunks out of my liver given risks unless it's absolutely necessary.
I did have the circulating tumour DNA test recently which did not show any actionable mutations. Bummer...
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Sadiesservant- Well I cannot see myself doing another liver biopsy. I have had 2-- 1 at diagnosis and 1 now. This one I had a hard time with (read my post from April 29) and then developed a PE from being off my aspirin for the biopsy. Now I am on Eliquis and would not want to pause it for another biopsy. I just do not understand all this. How does your MO know what drugs to try when?
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Hi Candy, I know it can be confusing for us "armchair oncologists" LOL but my MO has years of experience that he bases his decisions on. I've actually been his patient for 20 years and I trust him implicitly. We have very open discussions about treatment options, of course, and he is always more than willing to facilitate outreach to my RO or other professionals if I ask, but ultimately I remain very comfortable with his approach and guidance. While there a lots of potential treatments, in the end, there remains a fairly standard treatment plan (which I think Moth mentioned) in terms of guidelines. Having said that, access to drugs also plays a role as it's a bit harder for us to get the new treatments here in Canada...
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Candy I believe when moth says markers she means our status of ER+ PR HER2....changing not mutations like GATA3 etc...
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Sadiesservant- I like the term "armchair oncologists". That is me for sure. I just want the "why" of things. And my MO is good, I am sure. I have only been her patient for about a year. So I do not have the relationship that you do with your MO.
And my MO seems to think aloud. She mentioned several possibilities when we were on the phone last night--- televisit. Antibody drug conjugates, immunotherapy, trials, PARP's, maybe anti-hormonals but maybe not, maybe revisiting Verzenio sometime. She is mentioning too much stuff to me. Maybe some that would not work for me after all-- I mentioned my autoimmune disorders and she said "Oh, then we cannot do immunotherapy". Like too much thrown at me-information overload. Does she really know what to try next? And she always goes back to insurance. That we may not get the green light from insurance so we have to ask them first.
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Thanks Nicole. So if I am ER- now, I probably won't go back to +. I guess. How about you, Nicole. You have been on several lines of therapy. Do you do a biopsy? How do you decide what to try next?
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Candy, you made me chuckle. We also need a degree in human psychology and behaviour. I've definitely gotten to know my MO and his quirks. For instance, I know not to try to dig into prognosis/longevity questions - he shuts down (and in all fairness, I know he doesn't have a crystal ball - he's trying to keep me going as long as possible). He doesn't throw a ton of options at me but I have learned to pay close attention to what he says as there are little nuggets of information in there that I need to explore later. And more importantly, he is always open to answering my questions and will gladly review/comment on any scientific literature I send his way.
I also always get copies of my medical files as I find they give me a window into his brain that I don't necessarily get during our appointments, particularly given most are phone calls in the new COVID reality. He didn't specifically mention Aromasin on our last call, just mentioned going back to hormone therapy but he noted the specific drug in his notes. Now I will be going back to him with a query about adding Afinitor when I see him in three weeks.
It's really rather amusing. Sometimes I feel like my MO and I are a bit like an old married couple. We get each other and have built up a mutual respect. The funniest thing, when he was treating me with adjuvant therapy I even had the sound and cadence of his footsteps ingrained in my psyche. He used to laugh that I knew it was him coming down the hospital corridor... LOL! (Doesn't work as well anymore... he has different shoes and his routine is not as regimented.)
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hi candy, yes as Nicole said I meant hormone markers er/pr/her2. We tend to lose those so it's not unusual to become triple neg but rare to start TN and pick up markers. Otoh, BCO mods just recently posted a study where people did gain her2. I would like that for myself as it would open more treatment.
The genetic mutations that show up on genomic tests of your tumor might change though as tumors continue to mutate but again there are few actionable mutations. Your BRCA is good. P13k is the only other big one to hope for imo tho piqray seems hit & miss
Btw, I know someone else with mbc and an immune disorder and she too was told that they can't use immunotherapy.
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Candy I have only had 1 biopsy it was at my Stage 4 diagnosis April 2019 - 2 years ago. Actually I think they did one Oct 2019- when I had my cryoblation done but they were only checking for ER and HER2 status..it was not sent out for F1....
I haven't had another one bc the only real chance I had to get one was when I did the Y90 in December..but getting a sample is a totally different procedure than how they do the Y90 plus the only tumor large enough at that time for a biopsy was one that I had from original diagnosis so that would have been a waste.
Now I had the Y90 and that killed all my active liver tumors so when a new one pops up...I definitely be getting Tempus testing done.
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Candy, you said, "So my thought is, why not keep the hormonal therapy for the other lines of treatment and change the CDK, PARP, Piqray, etc. If by stopping the hormonals the cancer says "hey they opened the food lines again" and then the cancer grows."
I can comment on my own case. Biopsies still showed ER+ but the cancer no longer responded to hormonal therapy. For hormonal therapies I had used tamoxifen, letrozole + Ibrance, and finally tried Faslodex + afinitor which did not work. That is when I went on Xeloda and got two years out of it. The theory is that when we blocked the ER pathway, the cancer developed the ERBB2 (Her2) mutation and used that pathway instead. So when I progressed on Xeloda (and not all the liver tumors woke up, just two), I started on neratinib and herceptin to block that pathway, but also started Faslodex so the cancer could not revert to the ER pathway when we blocked ERBB2. This is succeeding. But note that the cancer still tests ER+, which yours did not, at least in the biopsied site. I agree with your point about tumor or site heterogeneity. It seems that some therapies can be used along with hormonal therapy, and some cannot because it would be too much for the body.
I wonder if you could have a talk with your onc about what is helpful and what is not when the two of you discuss treatment options. For example. "Thank you for involving me in my treatment. I do find it overwhelming to hear about every option you are considering, but when you have narrowed it down to a couple best options, I would like to hear your reasons and thought processes about them." Or whatever expresses your preference.
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SP are you HER2+??? You said you went on Herceptin? funny I did Ibrance/Let/Faslodex...worked 3 months failed month 4, then failed Xeloda(you had good success on that)...then failed Doxil then Eribulin did the trick but again 3 months went off for Y90 got liver all good no active disease so i asked to circle back to endocrine therapy...and now (what you failed on) faslodex + Affinitor .....
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No, not Her2 positive. Her2+ has too many Her2 receptors, and is also called Her2 amplified. What my Foundation One and Guardant tests showed is a mutation in the Her2 (also known as ERBB2) gene. So the clinical trial I am in is testing drugs that are used for Her2 positive, to see if they also work for Her2 mutated. I think they do! It is not a common mutation, but it is more common in relapsed ILC.
For you it seems like the grade 3 means that cancer figures out quickly how to get around a treatment. Fantastic that Y90 worked, and I hope Fas + afinitor turns out to be something to keep you NEAD!
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Ok I stepped away from the conversation for a bit and watched some mindless TV. Now I am back online and reading your latest posts. Thanks for all the input. This is so confusing. I hope it is not as confusing to my MO and she has more insight than I do on how cancer works and what we can use next, and then after that.
I think the scary thing is my flipping ER+ to -. Is it in all the tumors? Or just the one they biopsied? All 4 tumors did have some progression though, so seems they are acting similar. Why the hormonal change? I did not have the ERBB2 mutation (said not seen on the Tempus testing). So am I really ER- now? And hormonals off the table for me now and in the future? Will the hormone pathway reset later and I go back to ER+? Moth seems to think not. I cannot do immunotherapy. So if turn triple negative later then immunotherapy not an option. I want the ER back to + so I have more options of maybe another AI or Fulvestrant or A/A. Feels with the ER changing to negative it wiped out so many options for me.
SP- You make a good point about mentioning to my MO about voicing ALL her thoughts. I think that is how she processes things, like thinking aloud. And she probably thinks I want to hear it all because I have said to her that I want to be an equal partner in all this. So she probably thinks I want to hear all my options.
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Yes, that's what I was thinking, that she is trying to do what you asked. So I think you two can find the happy medium for you. Regarding options, do you have Bestbird's guide? That might be a good place to read up on options. Also, does your onc think PR+ (Only) counts as hormone-receptor positive in terms of treatment?
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Candy, I had the same thing happen at my last biopsy: ER- PR+ Her2-, when I had always been ER+ PR+ and Her2-. Obviously we are not the same person, but my MO said this:
- Even though the biopsy sample was ER- I most likely do have other tumors that are still ER+.
- Hormone meds are not off the table now or in the future due to this change.
- Progesterone is connected to, or dependent on estrogen in some capacity.
- A ER- PR+ cancer is still a hormone driven cancer.
I agree that it is weird and confusing to have this happen. I was on Faslodex when I had my ER- PR+ Her2- biopsy result. We then added Ibrance to Faslodex which did not work for me at all, and I had significant progression on those drugs. It seemed like maybe hormone meds weren't working, so we switched to Xeloda, but I also progressed a lot on Xeloda. Then I switched to Gem/Carbo which worked. It's been about a year since that biopsy, and I'd be interested to do a new biopsy and see if anything has changed, or if another biopsy site would yield a different result.
At the end of the day, my understanding is that this does not really indicate that we will become triple negative down the road, or anything like that. This is something else. I don't really understand it, but I do trust my MO. Anyway, I hope those bits of info are helpful - but if anyone else knows anything maybe they can chime in about it also - I'd like to know more too.
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