How are people with liver mets doing?
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Dear LFF, of course, 20. At least. We need you, this world needs you, you need you. I say it from the bottom of my heart. Also... ahh, ladies, you made me laugh... these heavy metal (although I am not against it in general) and sports commentator things:) Trough last 4 years I learned doctors a really some breed. But I think if I was working in oncology, I'd probably too would listen to heavy metal instead of J.S.Bach:)
Shetland, your win is our win too. It seems genomic sequencing together with well-picked combo is a key. Great news, I am beyond happy for you.
Live333, do not hesitate to write here. These people are wonderful and answers, suggestions and experience comes in no time.
Saulius
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During evenings I am all in now t virtual SABCS. I did not know for example, that Neratinib is a TKI that inhibits all Her pathways (Her1,2,3,4), that is why it is called pan-Her2 inhibitor. Wow... Dear ShetlandPonny, does any of your reports show any other Her mutation/expression than Her2 only? Also they say now they know a lot of escape mechanisms and pathways, and this knowledge and drug-spectrum would be almost enough to cut these pathways but there's one BIG problem: different tumors in different locations (let's say even two liver tumors) can escape by different pathways and it is impossible to biopsy all of them, and that is why you biopsy one-two, then give drug, then these tumors react but other tumors continue to grow. This all is very logical but it just shows complexity of the task... I mean science is pretty close to understanding everything but that does not mean drugs will be able to treat everything soon. Saulius
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SP ... Awesome!!!! Happy for you!!! That is great news.
LFF WOW just ...WOW 8 years is a lot I so wish they could come out with a drug that could extend us HER2- ladies like you Her2+
Saulius thanks for telling us about that. It is not only interesting but I think encouraging. Is that drug not only good for all Her2 but HER2- and HER2+??
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Dear Nicole, ShetlanPonny has, I think, her2 mutation but no amplification, is that right, her2 low by IHC? And yet Nerlynx (neratinib) works amazingly for her! Also, for the first time in history Dana Farber Inst. is planning a clinical trial for Her2+ MBC de Novo with CURATIVE INTENT. There's a drug-treatment scheme for that already. They also think there is already portion of patients who are cured, as they have reacted very well to treatment and some of them are 5 years out without any therapy and not relapsing. The considerations and scheme is below:
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Hopefully SP will weigh in, but neratinib (nerlynx) can be used in a variety of situations. SP and I both have ERBB2 mutations (no amplication of HER2 and I am still negative for HER2). That drug is on my list of possible next treatments.
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Shetland Pony great news!
I have to remember to bring my ear pods. Sometimes we hideout in the auditorium at Mayo. There is always chaos and it’s nice to just have silence.
Nicolerod they don’t get it. We are already anxious and the music can push us over the top.
Live xx
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Sualius...thank you...so basically unless we have some kind of specific mutation ie: like BevJen and SP ...or we are HER2 low or HER2+ that treatment is not yet seemed to work for those of us that are ER+ HER2- correct??
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Shetland Pony that is great news! I’m so happy for you.
BSandra thank you for posting the Curative Intent study. I am de novo and I have an appointment at Dana Farber next week. I took a screen shot and will definitely be sharing that with the MO!
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Grannax, I am so glad you were able to have your Christmas and birthday weekend with your family in spite of the awful problems with your procedure. I hope that you will feel comfortable in delaying your chemo for a week or two so you can continue to recover. Sweet gentle holiday hugs coming your way.
Katty
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Yes, dear Nicole, something like that... but Her2 drugs are becoming so powerful that even her2low people start to benefit.
Dear D37 - they are just in planning phase, it will take time, courage (oh yes, to challenge all these "incurability" believes of so many MDs) and finance until such study rolls out but N=77, so if you are close, maybe you could benefit. For me it is very important that medical community starts to ask questions about curability of MBC which was a no-go even 5 years ago. Stage III is curable, some stage III is very close to IV or is "hidden stage IV" and people get cured (do not relapse for years and years without treatments), so why not to start thinking about curing stage IV. It is about time. And drugs, some very effective ones, are already here. You guys in the US are closest to all of this "state of the art" happening, and you can get to all of this sooner, and that is simply beautiful. No false hopes, just facts - cures are slowly coming. Today just a few but in a few years there can be more, and our task is to hold on.
Saulius
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Saulius,
Thanks for being the cheerleader for the rest of us. I always love reading your uplifting messages and also your encouragement to people to keep researching and trying to find what works for them. It is such positive reinforcement for us all. And an important reminder to all that we should be pushing doctors to do more, go the extra step, think outside of the box towards what will keep each of us going.
As always, thank you.
Bev
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Saulius, Thank you for the information. When I met with the doctor at Dana Farber for a second opinion he mentioned that he wasn’t supposed to refer to my cancer as potentially curable but said that he has seen many that are “cured”. My MO that I see regularly reminds me frequently that he is not here to cure me and I will be treated very differently than someone who is stage 3 like my brother. I feel frustrated with that thinking, as though it’s not worth trying. Maybe I shouldn’t feel that way but I do. Hopefully with a study like the one that is in the planning stage, maybe the mindset will start to change. Denise
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Saulius you're such a great cheerleader! Good to counterbalance my natural pessimism. Because at the same time that SABCS is talking about curability of some stage 4, there was a presentation essentially reiterating the Fisher model of breast cancer and showing that most stage 4 recurring peeps were already stage 4 at dx, we just couldnt see it. (But somehow from the gene expression studies they could tell?) That just sounded depressing.
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D37,
I had a long run with letrozole alone after my first recurrence (13 years). After that, I was put on Ibrance and faslodex. I've been on that for about 16 months now. After about 2 months on that combo, the NP at my center said that I had had progression (not really, it turns out) and that I should switch drugs. During that conversation, she blurted out: well, we aren't going to CURE you. My husband's jaw fell open that she would be so forceful with that statement. I retorted with: yes, but all I want you to do is to find the drug that will keep my disease from progressing just as long as letrozole did.
We have not switched drugs yet, but I thought that was the meanest, most thoughtless thing that she could have said to me at that point in time, when all I was looking for was a little bit of hope that we could "treat" my cancer. I think that's what most of us want.
There does seem to be a dichotomy in oncology between the old schoolers that absolutely, positively do not see any cure for any of us and this doctors who are willing to try things, even out of the box, to at least try to get us to a state of relative dormancy. Maybe things like the Dana Farber trial will change the viewpoints of all oncologists. We can all hope.
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I have an update.
So They want me to start on Abraxane asap ( and by asap they mean after Christmas) since the liver has changed quite quickly and the size of the tumours are significant in comparison. I don't suspect that they feel there was a mis read but said that it's quite clear the the breast cancer has gained a resistance to the Letrozole. They were not going to start with a biopsy since the main objective is to stop everything in its tracks quickly. Apparently this chemo is the one to do it. However after I mentioned my equivocal Her2 status , she actually went to look at my path report and decided it was worth looking into again….with a biopsy . Basically I was right under the range for a positive, but because it was pretty close they feel like it is worth exploring. But only if we can get the biopsy before I start treatment. She feels like it'll be 2-3 weeks before I can Get my port re inserted since they feel going through the arm is not wise at this stage.
So she is going to put a rush on the biopsy and we are hoping it's all going to line up well. If it doesn't we might have to do the biopsy when I'm done chemo. Right now the protocol is treatment on Days 1 and 8, then a break until day 21 for 6 cycles. That's 12 treatments total. Then she said we will take a break and look at how I respond.
I mentioned interventional radiation therapy and she said that it's not really an option for breast cancer. However when I told her I was super informed and that many women ( Like many of you here) have had great success with ablation for liver mets, she did say she would set up an urgent consult with my Radiation oncologist. It's crazy that I feel like these are viable treatments but they were easy to be like " but not for breast" Say what?
So yeah, in the mean time I'm trying to get my body prepared to handle the chemo again so I don't experience terrible side effects especially since it is more frequent. Im also trying to do everything I can to slow it naturally in the mean time since they've impressed that I need to start asap but can't do anything until Jan. It feels weird but the silver lining is that I get to spend Christmas not on chemo.
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Hi, B-A-P, glad you have a plan. Hope the biopsy can get done quickly. I switched from Taxol to Abraxane in Nov but my protocol was 260mg every 3 weeks. If it's day 1, 8, & 21, it will be a smaller dose I think. I'm off chemo now for roughly a month while I do radiation to my lung met.
The whole thing with localized treatments or radiation is very much in flux right now. New research from USA means imo that ROs and IRs here are often aware of things they *could* be doing but they can't due to funding restrictions & non-approval of treatments but some find ways around it either through trials or local approvals.Are you doing Foundation 1 or did you let that go for now?
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Moth, I forgot to ask about the foundation one. I'll have to ask her next appt . Does it require the biopsy or is it blood work?
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Saulius - Thank you for the information about the pending Dana Farber trial. Even though I am Her2-, I find it very exciting that a cure for any kind of beast cancer is being considered. This is great progress. This is the area where most of that "pink" money needs to go.
BAP - I heard the same thing about local radiation treatment when I mentioned it. It wasn't a no, but more of an I don't know how much is out there to support it. It didn't bother me, because all I intended to do - at that time - was plant the seed for future discussion when/if my tumors are small enough to consider that treatment option.
BevJen, what an terribly insensitive thing for your MO to say in any tone of voice.
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B-A-P, both liquid and solid tumor Foundation 1 are approved in Canada since September. The thing is, the province might not pay for it. I think the solid is a bit more thorough? If we hadn't got enough tissue from my lung biopsy I would have gone for liquid but luckily they said they got enough for both the local pathologist and to send off to Foundation.
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B-A-P,
I would also say that for some people (like me) there was a bit of a discordance between tissue and liquid biopsy F1 reports. My tissue report was much more extensive than my liquid biopsy report. Not exactly sure why that was, other than that my tissue biopsy was done before embarking on more aggressive treatment, and the liquid one was done once I had been on treatment for a while. I think that can also skew the liquid biopsy reports.
Good luck.
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Hey y’all
lots of great info, updates & encouragement! FYI-I have erbb4 on my rna report from TEMPUS and was told I can put neratinib in my bucket. I am her2- by the fish report
We want to exhaust drugs that treat estrogen as the driver first. Going for the trial start up appointment and another biopsy on Monday/Tuesday.
I wonder if I should get another TEMPUS ($650 for me) to see if I have any changes on the CDK 2/4/6 that I was on for 8 weeks. Or just wait for the second biopsy on the new trial around 6 weeks in. Thinking I will wait since it won’t change my treatment.
I previously had 2 liquid biopsies at MDACC with zero results. So I am not confident in doing that again. My CA15-3 went down on the last trial so I probably don’t have many circulating tumor cells.
Good to “see” everyone out there. The support is appreciated and awesome!
Dee.
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BevJen,
That was SO insensitive for your MO to say that. I hope too that the view points of oncologists start to evolve with the progressive treatments that are becoming available.
That’s great that you had a long run with letrozole. I hope that your current treatment works just as well!
Denise
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Dee, you said, “ We want to exhaust drugs that treat estrogen as the driver first.“ So I wanted to mention that while the earlier versions of my trial tested neratinib as monotherapy, my version includes Faslodex for the ER+ bc cohort because they believe they will have more and longer good responses with the combo. Because if the cancer tries to get around neratinib by reverting to the ER pathway, it will get blocked. So even though for me the Her2 mutation made the cancer resistant to faslodex plus afinitor in the past, because the acquired Her2 mutation was the driver, we block both pathways at once. That said, my onc does have another stage iv ILC patient who got around 1 1/2 years on neratinib monotherapy.
Neratinib addresses HER 1, 2, and 4 as well as one or two EGFR somethings.
Bev was correct in saying my tests show Her2 negative/not amplified. Rather they show a Her2 mutation. Aka ERBB2 mutation. Actually, there were two different ERBB2 mutations on two different tests, but DH says they are near each other on the chromosome. Only a subset of the drugs used for Her2+ are effective on Her2- with mutation. For example, herceptin is not expected to work on Her2 mutated even though it works on Her+. Neratinib works for both. It is approved and used for Her+ early stage bc that did not have a complete response from herceptin. I get it in a trial because they are seeking approval for using it with Her2 negative but mutated bc. (I will look at my last Her2 test and see if it was Her2 low or not.) My nurse was able to get it approved for me outside the trial, but I wanted the combo.
Fyi these Her2 mutations are more common in advanced ILC than IDC.
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SP,
Thanks for chiming in on this. You know a whole lot more about it than I do.
How are you feeling today after your non-stent replacement? I hope that you feel well. Yay!
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Today I am doing pretty well considering I was in the OR yesterday. I feel tired and have the usual sore throat. I thrashed my voice this afternoon talking to the insurance company on behalf of my kid, so no more speaking tonight. A stomach ache came and went. Lips fared pretty well, just one small sore because I asked everyone involved to do their best to protect my lips. There have been times when I looked like I had gotten a fat lip in a fight. The silver lining is that the anesthesia and/or the anti-nausea drugs they give me on stent day keep the diarrhea away for a while, which means my energy level is decent.
I told Dr. Endoscopy that maybe my treatment had killed off some sneaky invisible ILC in there that was contributing to the stricture. But he said it has improved because the stents have widened the duct. Hmm, maybe both? Let's see what my onc says about it.
These stent days were making me feel like Bill Murray in Groundhog Day where he keeps waking up to the same day. Clock face flips to 6:00 am, and the music plays "Babe, doot doot doot, I got you Babe..." But eventually, finally, enough has changed for the better and he gets out of the loop! He wakes up to a new day. Eleven or twelve weeks from now, I will wake up to a no-stent-procedure day! ...Or else I will not even make it twelve weeks before I have to go back for stents. We will be watching my alkaline phosphatase, bilirubin, etc.
Lots of people on this thread I want to speak to, but now I must go look for some soft food. I slipped back into underweight this week.
(Lol Bev if I really knew about it, would I use phrases like “EGFR somethings"?!)
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Dear all, thank you for pronouncing me "cheerleader of this group" (that was sweet, thank you!), haha:> One day I'll try to explain this "optimism" in more detail, so that you'd understand that my "optimism" is science-based and not just optimism out of stupidity:> I come from an engineering background, a bit from development part, where we also try to solve immense and very complex problems, and I see several flaws in oncology science and its application. Actually the field admits these flaws but does not give too much effort to fix them. I very much want to encourage you to read one article called "Can a biologist fix a radio?—Or, what Iearned while studying apoptosis" (given to me by a very bright and clever "silent" member of these forums). I think it perfectly shows why engineers solve problems (thanks god now we finally have bio-engineering:) efficiently and biologists/medical scientists - not. It is pretty amusing, the article, but also tells how everything functions in a satyric way. I'd say it is a "must read" whenever you have time:) Just press on the "Link". Saulius
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Shetland pony
Hope you rested well. I like that neratinib is with Faslodex. I will keep it in my bucket. You are an inspiration!
The shots just don't seem powerful enough for me. Since I progressed on cdk+Faslodex (1st line) and Envirolimus + Faslodex (4th line) we know that my esr1 mutation is a factor in getting the most benefit from Faslodex. So hopefully this new trial drug will be strong enough to get some response. I will take it with ibrance. Edited-(Just found out it is changed to single agent trial drug only) since the trial SERD is now or never due to multiple lines of treatment, I am choosing to give a try.
Honestly my local MO and I think that the Neuroendocrine could be the driver (just not sure of the estrogen or ERBB4) so we are going to Neuroendocrine treatment options for the next line if my trial does not work.
It's kind of sad that I haven't even started the trial and I'm already thinking next line. But when 6 lines in less than 2 years continue to fail, I don't want get my hopes up.
Thankful that I'm feeling good and looking forward to Christmas.
Dee.
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Hi everyone! So I lurk here off and on because everyone is so knowledgeable! I have a question. I was talkingto my MO yesterday about switching my treatment because of side effects, she said we weren't there yet and she gave me lots s of other options which is good, but here's the question. When I asked about Keytruda she said it wasn't approved yet?????? Ummm that is not my understanding! And secondly she said that it wasn't an option because it's not used for second line treatment? Does anyone know if it was approved? I'm pretty sure it was and two can it be used for second line? I don't understand why not especially if my first line didn't fail we are just switching? I didn't understand her explanation or the fact that she didn't know that it was approved! Up until now I've had complete trust .
Jory
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Stillhavehope,
I think your doctor may be misinformed. Keytruda is still in clinical testing along with chemo -- she is correct on that. But the FDA has approved keytruda as mono therapy, I believe, for triple negative cancer. Additionally, if your cancer tests for either micro satellite instability or tumor mutation burden high (this is for any solid cancers) keytruda is an approved drug. I haven't seen anything that says it's only used for first line treatment.
Here's the history of FDA approvals over 2019 and 2020
https://www.drugs.com/history/keytruda.html
and here's an article about use with tumor mutation burden high cancers:
https://www.cancer.gov/news-events/cancer-currents...
I have tumor mutation burden high as shown by two different genomic tests, so I've had this discussion with my MO, and she has affirmatively told me that we could keep keytruda in our bucket for future treatments when I switch. In fact, the molecular tumor board at my cancer center actually suggested it for me as one of three possible future treatments -- as a standalone. For me, the beauty is that the FDA has also approved keytruda to be used every 6 weeks versus every 3 weeks -- I would sure like to be going to my cancer center every 6 weeks rather than every 4, like I do now.
I have found that a lot of MOs aren't really comfortable with immunotherapy. I think many are worried about side effects that could be devastating. But my feeling on that is hey -- dying is pretty devastating, so it's worth a shot. I also think that a lot of them don't know much about it -- I have been trying to educate my MO, and she's more knowledgeable about it than others because of immunotherapy trials that have occurred at my center. You can nose around a bit on Cancer Research Institute -- they have a lot of good info on immunotherapy -- if you are interested in finding out more about the ways in which it works.
The kicker is that it's not an automatic thing -- some tumors react to immunotherapy and some do not. So, in that sense, it's like all of our other drugs -- could work, but might not.
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BevJen
Thanks for your reply! Didn’t breastcancer.org just put out ant announcement that it was approved
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