How are people with liver mets doing?
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Thanks Moth.
This path report is several pages long and looks way different than the report in 2017--- done at a different facility.
It says equivocal per IHC.
My ER in 2017 was "strong" intensity and Allred Score was 8. I thought that meant strongly ER positive. Now intensity is 0 and Allred Score is 0.
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Hi Candy,
It's my understanding that, if it is truly ER negative, then estrogen therapy will not longer be effective. However, there can be quite a bit of heterogeniety with breast cancer. I've heard of patients with some areas ER- and other areas ER+. I also believe there are treatments (I think mTor) to try to reactivate the estrogen sensitivity but others with more knowledge may chime in and correct me.
I'm possibly in the same boat although my MO did not feel we needed to consider a biopsy at this time. (I find that he is much more reluctant to go that route as he is typically concerned about complications from biopsy procedures plus, with the pandemic, all surgical procedures are much more difficult to access.) When Faslodex/Verzenio failed and mets appeared in my liver he stated that I was now hormone resistant.
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Thanks Sadie. This is so confusing. I know I am not a doctor. But, wow, to try to understand it. If it is mixed and some still driven by hormones, but some of the tumors not, then how do you decide on treatment????? Keep the hormonals or move to something else? And my HER2 said "equivocal". So unsure of HER2????? If unsure then how treat it, positive or negative????
I did the biopsy, but did it offer any helpful information?
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Candy...MOTH pretty much said it all...but I just wanted to mention I have GATA3 too....
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candy, I'm being treated mostly as triple negative but one of my lung biopsies showed ER+ 3/8 so I now also take letrozole - so it seems they can treat multiple hormone profiles at once
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Candy278-welcome to the confusion of changing cancer biology.mines different in each slice of the SAME BIOPSY. your HER2 reading is similar to mine, read borderline. I guess good news because "HER2 low" is becoming a thing. However I have been denied potentially useful anti PD-LI drugs because they are reserved for HER2-negative. And while several clinical studies have also denied me on the basis of biopsy results showing me as HER2-, my own hospital continues to maintain that I am HER2 +.
Grannax2. keep that wit and wisdom coming, it is keeping me afloat.
Susan, you will find the best liver metsers ever here. lean on us.
12 days into this back/rib/liver pain nightmare. Tylenol with codeine helps the pain--but aren't I supposed to be avoiding paracetemol? They refuse to renew the prescription but if I am sparing I will last through wednesday when MO is supposed to be calling . Providing blood test tomorrow. They seem to think-based on only my description-that it's kidney failure. Which means goodbye PARP inhibitors. Also on high dose cortisone which has eased the swelling in my abdomen a bit, supporting the idea that its NOT ascites, but time will tell. I wouldn't be a candidate for drainage at home because I have no caregiver. Count me in among those who feel a little "speeded" on cortisone so its gonna be another sleepless night. Accordint to my fitbit I am averaging 4,5 hours with 5 minutes of deep sleep. No wonder I'm such a basketcase!
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candy, take this with a grain of salt because I am no expert, but this is basically what my MO said after I had a similar situation:
We do lose some of our ER+ receptors after being heavily treated, and while that does not make us "triple negative" it can mean that hormone therapy might be less effective, but not necessarily. PR positivity depends somehow, or is connected to ER positivity. My last metastatic biopsy specimen was ER negative - fully 0% estrogen receptors - but I still had 70-80% PR positivity. My MO said this means my cancer is still somehow hormone and estrogen driven. The catch though, is that for me hormone medicines and Ibrance have stopped working, so I am back on iv chemo for the time being. So even though I am not triple negative, we are kind of treating me like I am, at least for now. Chemo did clear out the lesions in my liver, for the most part, so that was a win for now. The cancer in and around my lungs is being stubborn though.
What do I make of all that? I really don't know. As long as my MO understands it I'm happy with that, but I am progressing in a couple areas so I may ask for a fresh biopsy and see if anything has changed again. Best wishes to you!
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Dear Candy, others, as much as I read, GATA3 is mostly in BC, so they use it to confirm that mets are BC mets and not other cancer. Also, "equivocal", uh... I would say this might open you new possibilities with HER2 targeted therapies if you push for them. There's lot's of info in ESMO2021 on HER2low, this now is very very important topic and many MOs and insurances are getting more flexible on this. I wish you could try some Neratinib or another potent inhibitor:/ Saulius
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Update---
Messaged MO nurse today to ask about FISH results. Did not show up in patient portal, but FISH was done and is Negative. So HER2 is negative. I will discuss the implications of the ER change from positive to negative at my MO appt on Monday. And still waiting for Tempus testing results.
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Candy-678 - The Her2low designation is by IHC and not by FISH, i.e. you can be FISH negative but still Her2low by IHC. There is a lot of discussion on the actual definition of "low" but the amplification is certainly ruled out. There are some articles out there on this as well as a number of ongoing clinical trials.
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Got my CT scan reports yesterday and I already have a second liver tumor. Described as "Subcapsular hepatic segment 8 hypodense lesion : 2.2 x 0.6 cm".
So after suffering through a lot of diarrhea, it turns out Verzenio + Exemestane wasn't working. At least not on my liver. The rest was stable.
I've never experienced this kind of rapid progression before. I had a lot of mets at initial diagnosis but very few new tumors since then. Just a couple of small tumors in my lungs that have been pretty stable and nodules in he pleura. I've also responded to all of my treatments except Keytruda, which I knew was a long shot.
Probably going to do Gemcitabine/Cisplatin next. My first experience with old-school chemo. The other possibility is Enhertu since I am HER2 low. Or Halaven that I've never seen work for anyone.
Anyone have a good experience with Gemcitabine/Cisplatin working on liver mets? Any recommendations for other treatments that have been effective on liver tumors?
Feeling scared for the first time.
Hugs, Susan
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Susan, not quite the same thing, but I've been on Gemcitabine/Carboplatin (which is related to Cisplatin) since January, and it has gotten my liver to NED. Overall this drug combo has been very effective for me. There has also been regression in my bones and my dura. The response in and around my lungs was mixed, but we're working on why that is.
I'm also Her2 Low (with a +1) and Enhertu was mentioned to me as a possibility after this regimen stops working or I can no longer tolerate it. Enhertu might be more tolerable in terms of quality of life, so that could be a factor for you.
I dreaded going back on iv chemo too, but I chose it because my cancer was bringing me close to a crisis point and I needed to do something big. It was the right thing for me and where my cancer was at the time. The cancer was making me feel so sick that I actually feel less sick being on chemo now, as crazy as that sounds. My hope is that if my overall disease burden is lowered by this chemo, I can eventually go back on more tolerable drugs for maintenance.
Best wishes to you.
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Candy, When Tempus report comes in, it may show ESR1. Several of us have it. If so, it will confirm that you are AI resistant. But, it means that a SERD might help, Faslodex helped the mets in my lungs for about a year.
Of course if you are HER 2 +, you will have lots of options. I’m not, so don’t trust me on this one. Lol
I go on Thursday to MO, etc. I’m sure my counts are up because of my two week break. I’m assuming my MO will let me continue on Navelbine for my second cycle.
Here I go again.
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Susan Halaven worked amazing for me...shrunk bone and liver mets.... and I have failed everything... problem is I only have had 2 treatments ever work..and both only worked for 3 months...
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Grannax- Wishing you well for Thurs MO appt and that you can continue Navelbine. I guess I am still HER2 Negative--- per FISH report. Awaiting Tempus results. See my MO Monday to discuss.
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Susan, ugh sorry to hear about your liver met progression. My next two lines are already mapped: either gemzar + one of the platins, carbo or cis; or xeloda.
There is one combo which I read as specifically being good for liver mets (as a salvage chemo for triple neg) & that was 5FU + cisplatin or carboplatin. https://ar.iiarjournals.org/content/32/5/1833.full The paragrapsh right above the Discussion section talks about the results specifically for liver mets & reading through the rest of the article they really seemed to suggest that the platins might be doing the heavy lifting. from that same article "The combination of cisplatin-gemcitabine achieves an ORR up to 80% as a first line treatment of MBC and 43% ORR in heavily pretreated patients"
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Susan
Stupid cancer -sorry about the new liver met. Can you get them treated locally with SBRT or Y-90 etc?
My trial doc says go for the targeted therapy first if it is not a crisis- save the chemo for later. Many trials limit the number of chemos.
I know this is scary- you have overcome so much. I care and I’m rooting for you.
Dee
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susan I am so sorry for your news. I am thinking of you. I miss that incredible smile and warmth you have even after only seeing it in person once.,
taxol took care of my liver when I had progression snd had to stop my her 2 treatment. I did weekly tacol vs every 3 weeks. I was told it had less SE, was tolerated better. I also had my hair grown back while still on taxol.
It appears that gir most of us treatment takes care of nets in one place but not others. I know what works for my brain doesn’t appear to work for my liver and now lymph nodes and vice verca.
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am I one of the only Her2+ people on this thread? I’m sorry but after many years snd do many posts I have lost track. I’m asking as everyone appears to be asking about Her2 status snd hopeful to be able to receive this type of treatment. I kinda feel like a lone wolf in a crowd. Don’t take that the wrong way. I was just wondering if I am in the minority. I honestly can’t remember.
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leftfootforward, my mom is her2+ and i think her2+/ER-/PR- is like 25-30% of breast cancers. i agree, what worked for her lymph nodes made her feel horrible and didn't work for her liver.
i hear you all who have had systemic treatments work! we are trying doxil now so hopefully that works for her. i guess i would have preferred a targeted approach after kadcyla failed but i see now that diff MOs have diff treatment styles. y90 is definitely something i want to try in the future!
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LFF, my wife is purely HER2+... Saulius
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thanks everyone. I have been on almost all Her 2 drugs if anyone has any questions. Saulius is better versed at all the technical stuff. Should any of you c” convert” to Her 2 +, I have probably had experience with most of the VP treatments you will hear about if you want some personal experience knowledge.
I think of everyone often and really hope we all find the answers and treatment we need to finally get rid of our cancer.
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macbookair2018, hope Doxil works for your mom's liver mets. It worked for me but I had to stop it due to a reaction after 2 cycles.
My experience about Y-90 to the liver: I should have pushed for this procedure sooner rather than wait for the 'systemic' therapies to work first.
In Oct2020, when she was asked by my MO to do a microwave ablation on one of the larger liver lesions my IR had said that I should go for Y-90. I should have heeded her advice. Six months later, I asked my IR if Y-90 is still an option for me. She said that based on the MRI, my liver is so full of tumors that Y-90 would cause liver failure and that "I'd pass very quickly".
SO IF Y-90 IS SOMETHING YOU WANT TO CONSIDER, DO IT NOW NOT LATER !
I am so disappointed! MO was sure that the systemic therapies would work on the liver mets but due to reactions, I had to keep stopping them and taking a break. I am not saying my experience is common - it could be just me and my super sensitive body!
(Cross-posted on Y-90 forum)
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Husband, wondering what the outcome of your wife's ctDNA test was. I appreciated the heads up as I was able to arrange for the test in early April. Unfortunately, while they were able to get ctDNA from the cancer, they did not find anything actionable. While it's disappointing, at least I know.
Thanks again!
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Thanks all of you for your kind words and suggestions! Love you LFF!
I was thrown a curveball today. I told my MO that when I read carefully through the report, everything was stable or less enhancing including my original liver tumor, except for the new second liver tumor. She asked the Radiologist to double-check that the second one was new. Surprisingly, he said that he wasn't sure it was cancerous and that it could be something benign caused by pressure from the diaphragm. Since I had 2 liters of liquid in my right lung, I was thinking that it might have been caused by that. Suggested to her that I continue on Verzenio until we get results from a liver MRI. Not that I want to get back to battling diarrhea but, at this point, I need to get as much mileage as possible from each treatment.
Incidentally, she was adamantly against radiating the liver tumor. I need to wait until I have my liver under control before considering it. Makes sense. Radiation may damage my liver and I could get a new tumor anyway if my liver isn't under control with treatments.
Hugs, Susan
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I like the sound of benign. Hope you get good results from the liver ZmR
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I saw my MO yesterday. She wants me to have Neupogen injections for 2 or 3 days after my second infusion next week. She's trying to prevent the low ANC that kept me from getting my third infusion in the first cycle. She didn't want to reduce the dose.
My labs were okay except for potassium being a little low. Of course, I stay anemic but not enough for transfusion.
Everything went fine yesterday. I'm feeling okay except for being tired. Normal, right?
She has been checking my CA 125 TM. It’s elevated to 128 ( normal is less than 35). I don’t know why she started checking it instead of CA 15-3. Maybe because it didn’t ever seem to elevate much.
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"Husband, wondering what the outcome of your wife's ctDNA test was. I appreciated the heads up as I was able to arrange for the test in early April. Unfortunately, while they were able to get ctDNA from the cancer, they did not find anything actionable. While it's disappointing, at least I know."
Same here. Found nothing actionable. The good news is she is stable and feeling decent.
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Change of plans for now--- I was to see my MO Monday to discuss the liver biopsy/ Tempus results. I called Tempus this morning--- report not done and will not be done until mid week next week. So I messaged MO nurse. Cancelled Monday's MO appt and will do a televisit when Tempus results released.
Next scans due in June anyway--- no date set yet. But just feeling anxious-- if things are changing and we are slow to respond and change treatments and allowing the cancer to possibly grow.
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Grannax - I am never so sure why they do what they do for TMs, but for me, they monitor CEA, CA15-3 and CA27.29. They all seem to reflect pretty truly, but CEA doesn't climb as quickly as the others. Mine shot up with the two new tumors in my liver. I am praying after Y90 they start to come down, although they tell me it can take awhile before they start to drop. They certainly didn't drop a couple weeks after, i.e they were higher than before the treatment, which sort of freaked me out. I am praying this Y90 worked. These two tumors had been growing fast. MRI not until early July.
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