How are people with liver mets doing?
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Amica,
I receive abstracts from the Journal of Vascular and Interventional Radiology, and this morning one relevant to you came through -- the full article is behind a paywall, but here's the article information -- perhaps you can pass it along to an interventional radiologist at your cancer center? The abstract basically says that these procedures are effective in both primary liver cancers as well as in liver metastases.
Simultaneous Stereotactic Radiofrequency Ablation of Multiple (≥ 4) Liver Tumors: Feasibility, Safety, and Efficacy
Peter Schullian, MD,Daniel Putzer, MD
,Gernot Eberle, MD
,Gregor Laimer, MD
,Reto Bale, MD∗,
Correspondence information about the author MD Reto Bale
Email the author MD Reto BaleSection of Interventional Oncology–Microinvasive Therapy (SIP), Department of Radiology, Medical University of Innsbruck, Anichstrasse 35, Innsbruck 6020, Austria
DOI: https://doi.org/10.1016/j.jvir.2019.12.7940 -
Amica - you need to speak with an interventional radiologist about ablation and Y90 types of local treatments. I had also talked with a local interventional radiologist who was in no way familiar with doing this for BC patients, but then found a specialist in Charlotte NC who has used local liver treatments on numerous breast cancer patients with success. Great discussion with him and lots of information. Right now my liver lesions are held in check by verzenio (complete metabolic response by PET scan - although lesions still there, but hopefully DEAD!). I may have to come off verzenio and if I do and my liver lights up again, I am going for Y90 treatments immediately if I am a candidate. Don't give up on that!!!
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Amica, here's the link to the thread "A place to talk death and dying issues" you may have been searching for: https://community.breastcancer.org/forum/8/topics/770023?page=165#post_5549417
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amica. That may be true at your hospital but it's not a true statement about local TX to liver. Seven liver tumors would be a piece of cake for my IR. It's done, successfully, for liver mets from MBC all over the U.S.. Is there anyway you can get a consult with a U.S. IR? Alabama Dee and I are perfect examples of how systematic and local TX has work ed together to give us a longer, better quality of life. I'm sad that this option is not available to you.
Anewbreath. Gumdoctors death took the breath out of me. I didn't get to actually meet her but we had so much in common. She's the only one I gave my cell to. We talked a lot. I mis those talks and all the beautiful pics she used to post.
Nicolerod. We have to do a lot of waiting. Be still and wait. Actually, I do better if I move and wait. Lol. Start a project or something, stay busy. It's a coping tool. But waiting is part of the drill. 💞
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Amica - If you are in Ontario, Canada, I can tell you that there is an interventional radiologist in London who is willing to perform Y90 on liver metastases. I had a consult with him. He said that he normally only does it for primary liver cancer, but has done breast cancer mets a few times. The catch is that it is not funded and the cost is very high (like $20K per lobe).
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got my my CT scan results. Radiologist will report it as "mixed|. MO was happy because as far as she's done the math, the tumor load is stable or maybe even a bit less. My lung tumor shrank a bit. In my liver, 3 smaller tumors shrank or stayed same, the largest one grew a bit. So yeah, a mixed bag.
Bottom line is that MO considers me stable right now and I will stay in the immunotherapy trial and we'll see how the CT in the next 8 weeks looks.
Sary, can you dm me the name of the interventional radiologist in Ontario? Maybe he would know someone in Vancouver who does it. Pretty sure I can't do it while on the trial but I'd like to line up my ducks for later.0 -
Moth- Stable is good. Woohoo.
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Moth,
We all like the word stable. And especially we like that the tumor load is stable.
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Explain "tumor load". My MO has never said it that way.
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Moth AWESOME!!!! Happy for you. Have you asked your oncologist about that new drug that just got approved for TNBC??? TRODELVY or sacituzumab govitecan???
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Thx everyone.
Nicole , thx for the cheers and the prayers a couple days ago. We haven't discussed it yet. For one thing I'm in Canada and afaik it hasn't been approved here yet tho we often approve things pretty soon after FDA does. Usually however, new oncology drugs, even if approved, aren't immediately covered by our public health plans. The only way I could really access Tecentriq for free is through a study becasue even though it's approved, it's not covered & unless I convinced the manufacturer and the supplemental private insurance we have through my husband's work to figure out some deal, I'd have to pay for it myself.
Anyway i think they said it was designed for use in people who have to have been failed by 2 diff chemo treatments. So it might be an option for me at some point, hopefully a goodish time in the future.
candy, tumor load is a math calculation the MO does. I think they esssntially add up the volumes of all the tumors. It's sometimes called tumor burden. It's one way of assessing how sick we are and how far along our disease is.
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Nicole Rod
My MO agreed to a 2 month scan Doxil midway after second dose of Doxil. I had the Y-90 and bland embolization scheduled the day after and needed base scans before the local treatment.
I’m glad I did because doxil wasn’t working. It allowed multiple small lesions to appear and I was miserable with hand/foot. I could not fathom staying on it another month
So I changed to Afinitor/Faslodex/sandostatin. These were the meds I wanted to start on from day 1 because of the Neuroendocrine, but they are not considered 1st line. I finally have something that I get to take longer than 3 months because it is working!!! The latest scans did not see the little lesions in the liver and the 3 large tumors were slightly shrinking. I do have 1 lesion in the lung that they saw on CT in January and it showed slight uptake on the PET. we will be watching that and I’m hoping they can treat it locally with cryosurgery, asking about that option on Tuesday
Bottom line- I would go with your gut. Ask for scans between 2nd and 3rd doxil infusions. It’s your body.
Dee
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Stable Mable- Moth! love to hear those words.
Grannax2- losing the beautiful souls we personally connect to, holdIng our hands, mimic our lives, and find hope when we possibly can’t......another level of loss this disease brings. You are so inspirational to us and I’m prayin you find peace❤️
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Thanks Dee.... my MO agreed to scan earlier but unless there is clear progression...said it would be too soon to stop treatment. Right now...my concern is my neck/spine...I have been in pain there for the past 3 days. I am not sure if its the Neulasta (which can cause bone pain) or if I now have mets there??? The ONLY reason I don't think its the Neulasta is because I didn't have pain like this after 2 weeks ago when I got it for the first time?
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anewbreathe. Yes, we did have a good mother's day in spite of covid. I did drive by myself. Kids explained that having had the virus does not automatically make a person immune. Yes, it's very hard not getting to hug my grandchildren. Harder I think because with MBC we never know when our last Mother's Day will be.
Alabama Dee. I have lung mets. I didn't know there was a local TX for them. That's good info. Does the IR do it? I have many so many,, I don't know if I would be a candidate. Thankfully, Faslodex is shrinking most of them. No SE except weight gain, Porky Pig here.
I go to MO on June 6. I don't know when she'll want to scan again. I don't know if ill actually see her. I do have to have labs and Fazlodex shots. I don't know how or if Telemedicine works in this situation. 💞
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nicolerod,
I had a hard time with neulasta because of pain- it is a long acting booster. I give myself filgrastin shots when the ANC dips below 1. They are shorter acting but don’t hurt as much and as long. It just means I have to get labs more frequently but I don’t wait around for the doctor to see me- either he calls or the nurse calls with the lab results to tell me yes/no on the shot.
I did this on Doxil and now on Afinitor. You may want to discuss this with your MO.
Granax-
I don’t know if they will do cryo on the lung met. My sister has lung cancer and that’s what they did onher so I thought I would ask.
Dee
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Hi everyone - it’s been a little while since I’ve been on. I was diagnosed with stage IV de novo with one liver met five years ago. I was NED for 5 years after liver ablation and Herceptin and perjeta. I just got news from my oncologist that I have a new 1.1cm x 1.7cm liver met in a new spot. Has anyone had similar progression? What did you end up doing for local and systemic treatment
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congratulations for being NED for 5 years! A dream.for so many of us. Can they perform local TX? Ablation or Y90
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I'm always preaching y90 because I've had two sets of y90s in the past three years. Both successful.josalive.
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More great news!
MD Anderson MO confirmed the bottom line is the same. Liver tumors have Shrinkage and are considered “treated metastatic disease”! Staying on current meds.
Praise God.🙌🏻They had their radiologist look over my scans from home. Doc had a video call to go over everything- their readings included much greater detail which is one reason I keep going back to MDACC. Even though she is not worried about it, we addressed the unspecified lung nodule seen previously. It had some uptake on FDG pet. MO suggested the currentmedicine may shrink it, but it had a very small but noticeable change so I asked to consider local treatment like SBRT radiation Or cryablation to the lung because the Y-90 local treatment worked so well on the liver. Dr agreed to set up a video consult. Another reason to go back to MDACC -she is open to explore local treatment
I learned here to embrace the "whack a mole" plan. Put out the poison (systemic treatment medicine for the whole body) and shoot the little buggers that pop up(local treatment like y- 90 or SBRT radiation, ablation.) In it to win it. 😉
Dee0 -
Thanks everyone for the suggestions. I did ablation with my first met and the cancer never came back there. I think this new met is in a difficult spot for ablation. I will ask my onc about y90 as an option.
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Alabama- Woohoo on the good news!!!! Yes, Praise God.
I had my CT scans today. Awaiting results. I know progression will come at some point, but I don't want it to. Will start cycle 30 of Ibrance (first line therapy) next week if all still ok.
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Hello all. I stop in to hang out with the liver mets clan occasionally. Sometimes I lurk. I am more often on other forums in BC.org. I have read over the last couple of pages of joys and sorrows. Thank you for sharing those and I hope all goes well for those in transition here.
Once again, I find that I have progressed. It always seems like a three ring circus when changing treatments. I should just be glad that I may have options. So I have this large-ish lesion in the middle of my liver. Right lobe is atrophying but labs are still mostly good. They mention lymph nodes intermittently on scans. I was re-biopsied. Ablation is out due to location, bile ducts, vasculature, etc. We are currently looking (theoretically) at Y90, external beam and resection. Then I will also be on some sort of maintenance drug. A lot of balls in the air.
As far as IV chemo, There was a little saga getting started on Taxotere and Herceptin which I completed and immediately had progression. We repeated taxotere+H& added P to which I had a complete response... but I progessed after a few months on H&P. They could not do ablation then due to lesion location. Then Kadcyla, worked at first but progressed after about 8 months. It makes me nervous to be running thru these treatments so quickly. My second opinion doc thinks we are crazy to chase local treatment and should just go with another drug therapy.
Y90 seems the best prospect for local Tx. I was going to see what people thought and how they had done but mentions of Y90 on the last couple of pages all seem quite encouraging. I have not yet had Enhertu or tucatinib and I am presuming I could get them (although I am not certain). I am also in the pipeline to talk with a couple of clinical trials.
The IR doc yesterday was so discouraging...he didn't say 'give up and do hospice now' but his prognosis was not optimistic. None of us has a crystal ball and I keep hoping to be lucky. Anyone have thoughts suggestions or experiences to share? I am a little better today. Yesterday I was SO demoralized. Thanks.
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Hi Lumpie, sorry to hear about your progression and your current frustrations. Ignore the IR. Easier said than done. The first IR I spoke to who did a good amount of Y90 told me I was too heavily pretreated and would go into liver failure if I tried Y90. The second IR who was actually much more of an expert in treating breast cancer specifically, told me I was an "ideal candidate". His exact words. I had it 2 years ago with no liver issues. Most IRs (and MOs) are ignorant to anything having to do with Y90 in BC. Most IRs know Y90 from liver and colon cancer only. My MO explained to me that for those cancers, there are few chemo options and one of them usually given (irinotecan) has a cumulative effect on the liver that can be irreversible. In BC, we don't have any drugs in the standard of care group that falls into that category. We have many chemo options and can go years and years on many chemos. Also, historically, Y90 was given as "salvage therapy", like a Hail Mary attempt when no options remained and the patients receiving it were in really bad shape. That is no longer the case. The IR is clueless. Given the opportunity, I would have had Y90 earlier rather than later. I had it 3 years into my mets dx and could have another one in my future. The body is better equipped to deal with it earlier, when you are healthier and still have systemic options to take along with the Y90 where the combo of the two could really work to give you a good period of stability. I did Doxil when I had Y90. Some people take a treatment break but I didn't feel comfortable doing that. Not sure where you are located but I suggest you find an IR who has experience with Y90 in BC.
One question - when you say your right lobe is atrophying, what do you mean? I haven't heard that phenomenon associated with liver mets and am curious about your experience. Usually the liver is pretty good at regenerating itself once it can kick out the cancer that is taking up space where normal liver cells should be. However, maybe something else is going on in your liver and I am thinking about this in the wrong way. My left lobe was described as "nearly entirely consisting of metastatic tissue" on my scan after my first treatment failure. Once I got the liver mets under control, all the healthy liver tissue regenerated itself. The liver is such an amazing, resilient organ.
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Dear Lumpie, I am so frustrated you get these outstanding responses to chemo-antibody combos, and then progress... there should be some mutant cells lurking that are her2-antibody resistant. Do you think it would be wise to biopsy new tumors in the liver (sorry to suggest such a hard procedure) and give these cells some g360 or F1 testing? I think if you react so well to so many drugs, you will react to new ones too but these lurking mutants have to be addressed in a right way, so that they could be killed once and for all. Did you talk about this to your oncologist? Saulius
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Lumpie,
I'm with JFL here. I was shot down by an MO when I first broached the topic of localized treatment.
I think you are located in the DC area, as am I. I would do two things immediately: first, I would contact Dr. Robert Lewandoski at Northwestern. He "wrote the book" on local treatments for liver lesions. With me, I sent him my scans (nort just reports) and he took a look and made a recommendation -- I never went to Northwestern to see him. He recommended microwave ablation for me, but it sounds like you might not be able to do that. Anyway, I had a consult with another doc at Northwestern yesterday via video, so Lewandoski might do that as well (I worked largely through his nurse).
Second, I'd try at Hopkins. I had also seen an IR at Hopkins, and he had made another recommendation (chemoembolization). After getting the rec for ablation from Lewandoski, I brought that up to him. He agreed to do the ablation, and although he is a little bit reluctant to go back in, he's been a great support and a terrific doc.
I also contacted an IR at U Penn who was willing to work with me -- also not that far from you, if you are in the DC area.
I will PM you with contact info. in case you want to follow up with any of these docs.
Good luck.
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Lumpie,
I also agree with Saulius. I'd ask your oncologist about a Gardant (G360) liquid biopsy.
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Wow. Thanks for all this great information!
It's funny, the IR doctor laid out quite a few options. He just didn't seem to think that my overall survival timeline was very promising. Which is kind of strange because usually when they think you don't have much overall survival prospect, they don't recommend a lot of options. As long as I've got options, I'll take them!
BevJen: Yes, you are correct I am in the Mid-Atlantic/DC metro area.
For the Y90 I have talked with Dr Tabori at Washington Hospital Center. (Anyone seen her?) It sounds promising. I haven't had a surgical consult yet. And given the fact that I may have a couple of lymph nodes positive, I may not even have one. I am lined up to talk to Dr. Hong at Arlington Radiology (VHC) about the external being options.
As far as current status, I feel like I'm doing pretty well. My labs are still good and, besides one possible pesky low lymph node - or maybe two - I just have this one lesion, at present. Liver function numbers are elevated, but less than 3x normal limits. Everything else is WNL. So I think I should be a candidate for most treatments. Of course, as we all know, you are only doing as well as your next treatment.
JFL: Regarding the atrophy, the right lobe of my liver has shrunk, and the left lobe has gotten considerably larger. It is amazing how it can regenerate. They seem to think that the shrinkage/atrophy has been caused because the lesion is compressing bile ducts and/or arteries. The very first PET scan they did, my liver was so full of tumors, that looks like a sack of golf balls. I just have the one tumor right now. I don't have to tell you all that it's a bit like playing whack-a-mole. I get one, we whack it down with something. I get another one we try to whack it down with something else.
I just had a biopsy a week or so ago. Patho confirms that the cancer, at least what they biopsied, is the same old metastatic breast cancer. (There was some concern that I had developed a second, new cancer, Cholangiocarcinoma. Not according to the biopsy/patho.) They had previously done genomic testing on the tumor from my breast. Unfortunately, they found nothing actionable.
OLD test results (done in 2019):
Genomic findings: ERBB2 amplification, MYCN amplification, TP53 p.E224*
Biomarker findings: MSI-inconclusive, TMB - Low, sequencing quality was insufficient for PD-L1 assessment. Although MSI testing was inconclusive, the low tumor mutation burden strongly argues against the presence of high MSI.
The following predefined genomic alterations failed calling quality control parameters, preventing assessment:
TERT: promoter mutation (C228T), promoter mutation (C250T)
Everything else on a fairly giant list was negative for genomic alterations.
Here is a direct quote from the NEW (2020) patho report: "the current specimen is morphologically similar to the prior right breast lumpectomy. Immunohistochemical stains on the current specimen, show that the neoplastic cells are positive for GATA-3, CK7, and mammaglobin (scattered, weak), while negative for CK20. These findings are compatible with a breast primary."
They've said we won't do new/more genomic testing but it's interesting that there are the GATA-3 and CK7 notations on the new patho. And I've never seen that before. It's frustrating not to have actionable mutations. But my cancer does seem to be susceptible to anti-microtubules (taxanes). Now I am wondering about the PD-L1 thing. I thought that was only a triple negative characteristic but I am reading that it is not. I'm going to have to be on some sort of maintenance therapy so I'll bring up additional testing when I talk with my MO and the clinical trials. (BSandra/Saulius maybe PD-L1 is our lurking villain?)
Bev Jen: thank you for the PM'ed contacts!
Question for you all: when do you feel like you get kind of overwhelmed with all the additional opinions? I want to be thorough, but sometimes it feels like I've talked to so many different doctors, it's difficult to synthesize the advice. Plus, no matter what they recommend, I have to get it past insurance.
To sum up…. for local treatment, I have a feeling resection is going to be out because of the lymph nodes. And that's probably okay with me because I am skeptical about the benefit. Plus I have a real aversion to dying on the operating table - or shortly thereafter. I have a feeling that the external beam is just not going to be as attractive an alternative as the Y90 – but I am keeping an open mind for now. It seems that local treatment buys you more month of overall survival so that is a distinct plus for local treatment. I'm thinking of figuring out the maintenance chemo as almost a separate project - but there may be more interplay between the local and the maintenance chemo that I'm taking into account right now. That's kind of a significant question. Thoughts on that welcome.
Sorry, this seems long and scattered. But thanks for all your wonderful help, support and advise!
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Lumpie,
Two more thoughts:
when you are talking about "local beam" or whatever radiation -- do you mean SBRT? NBNotes had that done so you could check with her. When I checked with her originally, she said that it wasn't that bad.
re the liver mets, if there is some question re bile ducts -- I'd check in with Shetlandpony about that.
As for the multiple opinions -- yes, it's overwhelming, but I am a great believer in going not just to a LOT of doctors, but to going to the ones who seem to be the best and the most knowledgeable. Like all politics is local, all cancer is individual. You keep the breast cancer research thread going, so you see the same names over and over as co-authors on certain papers -- you need to id the person or people who might be able to give you the best answers and who are amenable to doing so. I am not HER2+ or ER/PR-, so I don't know who those are. But that's where I would go first. Hope that all helps!
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Lumpie, any good clinical trials, immunotherapy combos?
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