How are people with liver mets doing?

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  • threetree
    threetree Posts: 2,434

    @intolight - I think that's a real good thing that your oncologist goes to the tumor board when you have progression. I'd never heard of that before, and it would be like getting a second opinion. Best thing is that your oncologist is obviously open to both doing it, and the opinions of those on the tumor board. She sounds really good. My oncologist did suggest the consultations, so I too essentially got second and third opinions. I think his original intent in suggesting them though, was to encourage me to be more amenable and confident about doing a localized liver therapy. I had been wary and wanted more positive information, while he wanted to arrange for some sort of procedure down the line when progression hit. I think he was a bit taken aback by what the surgeons had to say, but at least he was open to their assessments and suggested to me that it looks like their opinions are the ones to go with.

    Getting routine CT and bone scans with contrast later this morning and am of course hoping for nothing new. It's always so scary, stressful, and anxiety producing to get these scans!

  • intolight
    intolight Posts: 2,884

    @threetree I'll be thinking of you today as you go through your routine scans and praying they come back clear. The scanxiety is very real for all of us. An interesting note about the tumor board is that other physicians, etc., in my health system can view the tumor board meeting video. My PT who was an oncology specialist PT told me she saw my case reviewed and was able to customize my therapy accordingly. I would love to be able to see it but probably can't for FEMA laws. Still, I think there are some good medical things happening.

  • threetree
    threetree Posts: 2,434

    @intolight - I really appreciate your good wishes for me for today. I'm sure you know all about the trepidation that comes with getting them. That's really interesting too about how your tumor board can be viewed on video by others. I haven't really heard much at all about my facility's tumor board lately. Maybe I'll ask around. I'd never heard of a PT being privy to things like tumor board meetings. Very interesting and makes sense. Thanks again for all the positive thoughts and energy - I will carry it with me on this dreary rainy day we are having here.

  • cure-ious
    cure-ious Posts: 3,116

    3Tree, Thanks for relaying the essential information from those experts, and I suppose it makes sense given that in addition to the known mets, there may well be many micromets too small to be detected in scans, so no significant benefit to local treatment. However, as indicated in the article below there are quite a few reports now that histotripsy can be a strong adjuvant to immunotherapy, or may even have effects in the absence of checkpoint inhibitors, and because of the unique way it destroys the tumors the neoantigens are left more intact to allow the immune system to prime off of them and set off an abscopal effect where something of a systemic immune attack may happen. It doesn't get around the issue of the need for ultrasound detection, however the effect could be in principle be accomplished with ablation of just one or a few tumors, and I wonder if, with time, some tumor(s) might become detectable by ultrasound?

    https://www.sciencedirect.com/science/article/pii/S1040842825004421

    Abstract

    Histotripsy is a novel, non-thermal ultrasound-based technology that utilizes focused acoustic waves to mechanically destroy tumor tissue. This review examines histotripsy’s potential to overcome immunoresistance and treat metastatic cancers by inducing potent innate and adaptive anti-tumor immune responses. Tumor destruction releases tumor-specific antigens and damage-associated molecular patterns, facilitating immune activation and transforming the tumor microenvironment from immunologically “cold” to “hot”. Preclinical studies show increased CD8 + T cell infiltration, macrophage repolarization towards a pro-inflammatory phenotype, and both local and distant (abscopal) tumor regression. Clinically, patient trials in hepatic tumors report high procedural success and safety, with initial reports of abscopal responses suggesting significant potential systemic benefit. Histotripsy offers potential benefits over radiation therapy, which rarely induces a systemic response, and immune checkpoint inhibitors, which are associated with severe systemic adverse effects. Although further clinical validation is needed, accumulating evidence positions histotripsy as a promising advancement in minimally invasive, immunomodulatory cancer treatment.

    Highlights

    • •Histotripsy utilizes non-thermal ultrasound to mechanically ablate tumors.
    • •Histotripsy can shift the tumor microenvironment from "cold" to "hot".
    • •Histotripsy can induce a potent systemic anti-tumor immune response.
    • •The abscopal effect has been observed in human hepatic tumor clinical trials.
    • •Histotripsy limits collateral and systemic adverse effects seen in other therapies.
  • bsandra
    bsandra Posts: 1,083

    Dear @threetree , thanks a lot for such a detail descriptions of your visits to liver specialists. Statistically speaking they are absolutely right and their comments are very sobering, especially about the "untreatabillity" (ehm, what is this word?) of BC liver mets:/ Thing is - we separately usually don't fit one or another statistics' figure and therefore we have a " personalized treatment plan". In your case, knowing the whole history and big success while treating you, I'd go for biopsy and genetic testing (don't know if you have done that before or not) and reconsider systemic treatment to knock mets back. What do you think? Saulius

  • threetree
    threetree Posts: 2,434

    @bsandra - Hi Saulius. I did have a biopsy and it showed that I have some sort of AKT1 (?) mutation that is not good. Apparently it makes the lesions and any "daughter cells" they have more aggressive. What the doctors tell me, is like you say, that systemic treatment, i.e. drugs, are probably the best and only route now.

    @cure-ious - Thanks for all of the interesting info. I'm not really able to comment right now, because I'm feeling pretty bad from scans I had yesterday - both from the results which don't look good, and something like a "hangover", maybe from the contrast or something. I've got a headache, all over body aches, and lots of fatigue today; the day after a CT and bone scan. Never felt like this afterward before, but just can't think real well and pull thoughts together very much. I want to read more of what you posted and comment further at a later time. I do remember reading myself about the possible "extended immunity" that might come from histotripsy treatment, but I don't know much about it. The histotripsy surgeon I spoke to did bring it up also, but primarily as a "theoretical only" kind of thing. I could be wrong and maybe my memory is off, but I think what he said was that there were early indications of the extended immunity effect, but that it hasn't really played out very well in practice now over time. It wasn't anything that he could say definitely happens or would be a reason to give histotripsy a try. Again, I'm vague about what I remember, but I just know it wasn't encouraging in the least, given what had to say about the immunity thing.

  • aj
    aj Posts: 401

    @threetree , I’m sorry about the trouble with your liver. And interesting about localized treatment. And about your scanxiety. I hope you get back to feeling better! And that this rain stops so you can take your walks again!

  • ailurophile
    ailurophile Posts: 127
    edited December 23

    Hi there. After almost 7 years of being clear on Verzenio, my most recent PET/CT showed a completely new lesion—1.8 × 1.2 cm—in the periphery of the mid right liver lobe, and it’s considered highly suspicious.
    My oncologist has ordered a CT-guided liver biopsy, but due to the holidays it won’t be done until at least January 6 or 7. He’ll decide on the plan once the biopsy results are back.
    I’m feeling very anxious and scared and honestly not ready for the possibility of a new chapter. I could really use some perspective or reassurance right now. What usually comes next in situations like this? What treatment options are typically available—medications, radiation, or anything else? Any words of wisdom or experience would truly help

  • perky2020
    perky2020 Posts: 86
    edited December 27

    I did complete a histotripsy and unfortunately it was not successful. I have 3 lessions and they were able to treat 2. The surgeon thought he got the biggest one well and had high hopes but 3 months later my PET shows they are all still there. The surgeon said he would try again if I wanted to but didn't expect any different results. He said he hasn't seen a lot of benefit for BC patients. Ugh.

    I went back to my oncologist and asked about radiation. I meet with the radiologist next week.

    Then I met with my second opinion oncologist and she gave me the same information threetree received. She would recommend systemic therapy for liver mets. Radiation or other treatment treatment may work but more mets normally come back. Double ugh!

    I will let you guys know what the radiologist says but my hopes are not high.

    Ailurophile - wow, 7 years on verzenio, that is amazing!! Was that your first line of treatment? If so, you have many options. The biopsy will be an excellent source of information to help guide you to the most targeted for your cancer. Looking into a trial might also be a good idea. Changing treatments can be so stressful for sure. Hope your biopsy comes back quickly and it gives you lots of good options!

  • aj
    aj Posts: 401

    @ailurophile I had progression in my liver after less than a year on Verzenio. My oncologist switched me to Xeloda, Faslodex and Zometa. So far so good. Everything is stable now. It’s been over a year and a half on this. Your oncologist will come up with a new plan.

  • Aj,

    Thank you so much for your reply. MO offered to enroll me in a Phase 1B research trial, which I declined. His current thinking is to treat the lesion locally with an interventional radiologist and then start me on stronger hormone blockers if the biopsy results are the same as they were seven years ago. He said it would most likely involve a monthly injection along with some oral medication. He’ll finalize the plan once the biopsy and liquid biopsy results are available.

    Perky (2020),
    Thanks for replying. After my metastases to the chest and liver in December 2018, I was enrolled in a clinical trial (LY3023414) along with Verzenio and letrozole. I also had my ovaries removed for complete hormonal suppression (menopause was required for eligibility in that trial). This treatment kept things stable until last month. Prior to that, I had four rounds of chemotherapy in 2013 when I was originally diagnosed with stage 1B breast cancer.

  • seeq
    seeq Posts: 1,266

    @ailurophile - I'm very sorry about your progression/recurrence. I am currently on Verzenio for liver mets, and have been for 5½ years. It's encouraging to know that it worked for 7 years for you as I've been feeling like I was waiting for the other shoe to drop. When we thought I was having a recurrence, about a year and a half ago, my MO also said the biopsy would determine the next treatment. He speculated Affinitor as one possibility if there were no actionable mutations, Piqray ( or now Truqap) if there was a PIK3CA ( okay, I might have that jumbled a little, but you get the idea).

    Orserdu was very new at the time, but I am very interested in it if I have the ESR1 mutation -especially since it is supposed to be more effective for people who had long success on CDK4/6 inhibitors. That certainly sounds like us. Elacestrant is the non-brand name for Orserdu. There's a new FDA-approved drug for ESR1 mutation called Inluriyo (ilmunestrant), but I haven't heard too much about that one yet.

    I had a friend who had a good experience with Orserdu, so it sounds funny, but I'm hoping for that as an option when the time comes.

    Good luck with your biopsy and be sure to come back and let us know how you're doing.

    Catherine

  • intolight
    intolight Posts: 2,884

    @seeq I was on Orserdu for ten months and now have progression so I am changing. I know there is the new Inluriyo but my MO didn't offer it. The Orserdu was actually pretty easy on me. Unfortunately since I have gone through so many different meds my Mo has suggested I need to go on IV chemo and the tumor board agrees. I have never been on chemo before. If I struggle on it, I will stop. Perhaps then I can go back on the new drug.

  • seeq
    seeq Posts: 1,266
    edited December 24

    @intolight -I remember when you went off Verzenio. I didn't recall that you were on Orserdu. Part of my thinking is that the ESR1 mutation can come and go, so I want to capitalize on it while I can (if I can). KBL was on it also and spoke well of her experience on it - and I'm thinking it worked for her for around a year +/-.

    Do you have any idea which chemo they are thinking of for you? That's one of those things I've said I'll think about when I have to. I could speculate now, but I won't really know how I'll feel about it 'til I'm there.

    Catherine

  • intolight
    intolight Posts: 2,884

    Catherine, yes I have the ESR1 mutation thus the Orserdu. My MO is putting me on taxol but at 80% to see how well I tolerate it. I will be two weeks on and one week off instead of three weeks on. She knows QOL is important to me. We shall see if her calculations work!

  • Intolight - wondering if you guys considered any of the ADCs? enhertu, sacituzumab govitecan-hziy or dato-Dx (Datroway)? I understand they are chemo but more targeted than iv chemo.

  • intolight
    intolight Posts: 2,884

    @perky2020 I don't know anything about those drugs. I do know she is very concerned about SEs. I will ask when I see her in two weeks.

  • intolight
    intolight Posts: 2,884

    @perky2020 enhertu is for HER2+ and I am HER2-. datroway and sacituzumab govitecan-hziy are for triple- so that is probably why my MO didn't suggest them. I appreciate your suggestions. I am always looking for alternatives to chemo. She did mention a few other ones but rejected them for similar reasons. Even the new oral SERD which is for ESR1 mutation which I have, but I am endocrine resistant now. She said she consulted tumor boards at two different hospitals in our hospital system and a different one in Denver. She offered for me to call them and set up second opinions, but I don't want to wait to start a new treatment as my markers are rising rapidly and they would take time. She has an extensive background in research and has previously taught in the DU medical system. I don't doubt her research of efforts.

  • cure-ious
    cure-ious Posts: 3,116
    edited December 29

    IntoLight, I haven't kept up with everyone's latest, Thanksgiving and Christmas were amazing and very busy this year, but I did want to comment that CDK4,6 inhibitors combine very effectively with Orserdu (I have been on that in one combo or another for a year and a half), and that for cancers that have become endocrine-resistant, the Orserdu can re-sensitize them to CDK4,6i (as you probably know), just wanted to be sure you tried that combo to recheck the ET sensitivity…

  • intolight
    intolight Posts: 2,884

    cureious, I understand that, but my tumor markers have been rising on Orserdu for six months now. I can ask about combining it with a CDK4.6 inhibitor at my next appointment.

  • cure-ious
    cure-ious Posts: 3,116

    Adding Verzenio quickly reversed the TM rise I had after six months on Orserdu alone, but had to drop it for the trial, may come back to that for a bit when the trial is over..

  • intolight
    intolight Posts: 2,884

    Verzenio failed me after two years. It was what I was on prior to Orserdu.