How are people with liver mets doing?
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Nicole- I went to Taxol and herceptin perjeta when my liver Mets originally show up. We tried kaytruda but my brain Mets went crazy while I was on that. I had weekly taxol infusions as my MO said there were less side effects than taxol every 3 weeks. I was able to work during my weekly taxol treatments. I of course lost my hair again but I really didn’t see a huge difference in other SE with the weekly taxol treatments. I was on weekly taxol for over a year until my brain Mets got out of control. Then I went on Neratinib in a clinical trisl in CA followed by Tucatinib.
I don’t know about your other treatment option. I can say weekly taxol really killed my liver tumors snd nothing new showed up in me from my neck down.
I’m sorry you are in this situation. Many hugs to yo
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Dear Nicole, from my "experience" and what I observe in mTNBC space, I think pembrolizumab+paclitaxel is a good option, as results from KEYNOTE-355 came in (announced at ESMO2021). If something, you still have Trodelvy (TROP2 target) and Leronlimab (CCR5 target, BTD status at FDA: https://www.targetedonc.com/view/leronlimab-application-for-breakthrough-therapy-designation-in-mtnbc-submitted-to-fda). I have seen somewhere (I think it was one of Aleix Prat's et al articles but cannot find it now) that even "negative" PD-L1 was not necessarily a factor for some people - they responded very well to pembrolizumab. We completely agree you might know you are progressing but I think it would be better to confirm it. As scans are still some weeks away, I again think, an ultrasound would be easier to get sooner, and it would be an easy procedure, a very reliable one in the hands of skillful specialist. Could you ask your MO about that? Saulius
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Thank LFF and Saulius..I think the ultrasound would be usesless bc I never had one to compare it to and with all the Y90's I have everything looks like big tumors on scans even the dead ones (at least thats what they say) each time I have a PET I have to Drive to Washington DC to my IR and give her a copy of the disc so SHE can read it bc even my cancer center is not experienced enough to read it properly bc of the Y90.
I guess you all thought I would and my MO would just switch treatments bc of what I am feeling..we wont...that is why I am trying to move it up....
I go some PM's here and they all said do the Taxol and the Keytruda...only like or 2 said Trodlevy..so I am still torn will have to wait I guess till Dec 2 to talk to MO....seems like forever...but in the meantime I started the Ivermectin up yesterday and will continue on that.
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Dear Nicole, one thing is for sure - you can easily compare ultrasound with any previous CT/MRI/PET, you can easily locate lesions, measure very exact sizes, and notice features that are just a few mm in size, even those that no modern techniques see, and also activity - normal ultrasound specialists see very well which tumors are active/dead/sleeping, etc. Our ultrasound specialist always does these things, and in fact, he's the only one who sees Sandra's liver fibrosis (MRI/CTs is absolutely clear) and found 1-3 mm lymph nodes when no technique saw them, and also infiltration in breast skin when she progressed in 2019. Remember that also most of the biopsies are guided by ultrasound too. I mean, in past 4 years, I haven't seen better technique than to locate/identify/measure this disease, except for bones and brain. Saulius
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Saulius,
Maybe it's just my cancer center, but they don't seem to favor ultrasound in doing any kind of testing. I'm curious whether other places in the US do. My oncologist immediately jumps to CT scans and the interventional radiologist who I've used favors MRIs for post procedure views. When he did my procedures, we had both an ultrasound and a CT in the room, and he used the ultrasound first to see if he could visualize lesions and had the CT there in case he could not. In fact, if I remember correctly, when I had my biopsy in 2019 to identify mets, the doctor who was doing the biopsy was a fellow, and she said she could see the lesions on ultrasound and asked if she could proceed with that -- the supervising doctor said no, go to the CT.
Perhaps this is a difference in training of medical personnel in the US versus your country? I don't know, but it's very interesting to hear.
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Well I just got my mutations here they are...any toughts?
Considerations from our molecular tumor board- The CHEK2 mutation may predict for a higher likelihood of responsiveness to PARP inhibitors.
PD-L1 negative
TEMPUS xT (TL-21-5VG9SNSS) Liver specimen collected 08/20/2021 (Report date 08/31/2021):
MS StableTMB – 7.9 m /MB
CHEK2 p.C420Y Splice region variant - LOF 89.0%
GATA3 p.P409fs Frameshift - GOF 33.4%
CCND1 Copy number gain
FGF3 Copy number gain
FGF4 Copy number gain
FGFR1 Copy number gain
PAK1 Copy number gain
RSF1 Copy number gain
VUS:
FCGR2A c.906C>A p.N302K Missense variant NM_001136219 60.5%ARHGAP39 c.2056C>T p.R686C Missense variant NM_025251 42.4%
ZNRF3 c.2042C>T p.S681F Missense variant NM_001206998 33.3%
WNK1 c.2176_2219delins(46) p.I726fs Frameshift NM_213655 32.9%
FANCM c.4366C>T p.R1456C Missense variant NM_020937 32.6%
NBN c.2029G>A p.D677N Missense variant NM_002485 31.6%
CDKN1A c.549T>C p.D183D Splice region variant NM_001291549 30.6%
SYNE1 c.10941A>C p.E3647D Missense variant NM_182961 25.9%
DOT1L c.3613G>C p.A1205P Missense variant NM_032482 25.9%
SYNE1 c.14924G>A p.G4975E Missense variant NM_182961 22.3%
SYNE1 c.2875C>T p.L959F Missense variant NM_182961 21.8%
SRSF2 c.536C>T p.S179F Missense variant NM_001195427 13.8%
MALT1 c.1768A>G p.M590V Missense variant NM_006785 11.7%
AMER1 c.1253G>A p.R418Q Missense variant NM_152424 8.8%
P R E V I O U S T E S T I N G
Reviewed at Molecular tumor board on 10/15/2019:
Considerations:
- No recommendations for molecularly targeted therapy.
PD-L1 Tumor-Infiltrating Immune cell (IC) Score (%) 10
Tumor cell (TC) score (%) 0
Liver specimen collected 04/12/2019
MS stable
TMB - Intermediate (6Muts/Mb)
CCND1 amplification
FGR1 amplification
FLT2 amplification
C11orf30 (EMSY) amplification
FGF19 amplification
FGF3 amplification
FGF4 amplification
GATA3 P409fs*99
IKBKE amplification
NSD3 (WHSC1L1) amplification
ZNF703 amplification
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Hi everyone I’m pretty new here and feel like I’m crashing a party but need some help, hope and sage wisdom
I was diagnosed 2.5 years ago as stage 4 and have been bone only, wobbly stable ion Ibrance and first Anastrozole then Faslodex ever since
My last Pet/Ct showed small areas of concern in my liver—even though my blood work was all normal My onc suspected a false positive but ordered an MRI to be sure
I just got results from the MRI and it says I have "multiple, scattered sub centimeter lesions" in my liver.
Ever the optimist, I thought "ok, that sounds small and manageable" and proceeded to Google radiation, ablation and Y90 treatments assuming I would just zap the little buggers, keep my hair, and return to bone only bliss.
But Dr Google tells me the median survival w liver Mets is less than 2 years? And that all these fancy techniques are for colon cancer metastasis not breast? Especially if the breast is in other sites beyond the liver?
WTF.
I feel great. I am traveling, working, riding my horse. Am I delusional to think this level of life quality is almost over?
I have read through this thread, and it seems that the Googleprognosis may be gloomier than reality, but is it?? Any stories that might give hope? Or am I grasping for straws!!!!
I see my onc on Thursday to discuss… but want to have ideas to present. I’m also not 100% sure I trust him I left a leading doctor from a major cancer center because of her bedside manner, but now I wonder if that was a mistake too
Ugh.
Thanks so much for any thoughts—I know you all have your own crap to deal with so appreciate anything you can offer to a newbie.
P
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hi pbsoup, we have a thread here for y90/ablation etc.
https://community.breastcancer.org/forum/8/topics/...
The locoregional treatments are not in the official recommendations yet. RCTs are still running now to see if there's a survival advantage.
It's harder to get the treatments if you have lots of little mets rather than a couple big ones but it depends... you can always ask for a IR referral
Visceral mets definitely changes outlook (compared to bone only) but many people find a treatment that beats them back.
Best wishes
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Hi pbsoup. I'm about a year into liver mets, still working (although hoping to step back soon to get more balance in my life and to enjoy my time) and pretty active. My MO certainly hasn't given me the "two year" message and there are several on the thread who have done well for quite some time. Xeloda did a pretty good job of beating back the little blighters in my liver and now we are trying Vinorelbine - we'll see how it's doing in a few weeks.
As Moth notes, there isn't a consensus yet on the use of local treatments. I'm in Canada and it's only an option for me if systemic treatments fail It seems to be more of an option south of the border.
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Hi, pbsoup.
I've had three microwave ablations, but I have more liver mets than that. When my liver stuff was diagnosed in 2019, I had one lesion that was larger than the other 3-6 that I had. The interventional radiologist agreed to use microwave ablation to remove the larger one and left the others alone. (We were banking on the abscopal effect.) That held me with no increase in the other ones for at least 14 months. Then another larger one popped up. We did another microwave ablation. It didn't get the whole thing, so we had to go back in. That was no. 3. All that time, the other smaller ones stayed stable. I was on Ibrance and fulvestrant. Once I came off of that, and went onto keytruda, all hell broke loose so microwave ablation has been off the table for me after that.
Y90 (which I have not had) is often used if there are multiple lesions, but you would have to consult with an IR.
Just know that a lot of oncologists are not crazy about local treatments at all. Their training is all about systemic therapy (like Ibrance) and so sometimes it's difficult to get them to buy into it. But you should definitely ask. I think the treatments started out for other cancers, but they are being used for breast cancer now, especially in larger centers. You might want to take a look at Memorial Sloan Kettering or MD Anderson and see what they say about interventional radiology and cancer -- that will give you a better idea.
Good luck -- ask a lot of questions and try to get in to see an interventional radiologist and/or to get your oncologist to bring your case before the liver tumor board at your center.
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I have been abstaining from alcohol since my stage 4 liver mets diagnosis. In addition to protecting my liver health, I keep reading alcohol isnt so great for helping you fight cancer.
But on very special occasions, a few a year, I will have one drink. This weekend it was one, an old friend was in town.
My liver has been hurting ever since. Afte a progression back in the spring, Now I am nervous about this pain.
My liver values are oddly perfect in spite of several sizable mets that have thankfully been shrinking or stable.
Do most of you have liver pain if you have one drink? Inflammation or something?
it is freaking me out that my drug might be failing.
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Nicole- I don't know much about check2 and PARP Inhibitors. Sounds like another topic to bring up with your MO. You have endured so much I care about this hard time.
PBsoup- breathe, process and educate. Cancer stinks but you found a good group to help you navigate the waters of liver mets. FYI- I am 2.5 years out with MBC and there are many others here even longer and doing well living with MBC
Steps I would ask for
1)Biopsy with next gen sequencing-to check for mutations, any changes in er/pr/her2 status ask for Foundation 1 or TEMPUS they both have programs to limit the out of pocket costs
2) discuss Systemic and local therapy options.
after progression on the CDK 4/6 plus AI or faslodex, Many leading MO are moving towards targeted therapy Afinitir/faslodex(or AI or even tamoxifen) as second line to push back chemotherapy
If you are PIK3ca positive there is Piqray targeted therapy.
Chemo can rid the tumors from the liver, but also do damage. Many clinical trials limit the number of chemo lines to 1 or 2. Trials can get you onto the next generation of drug before it is released.
Local therapy may be more difficult use on smaller diffuse tumors. Are they all in one lobe or in both? You can request an interventional radiologist and a radiation oncologist (for sbrt) consults
You will get through this scary time. I understand about questioning your doctor. Don't be afraid to get a second or even third opinion. It's so much better when you trust your MO.
Dee
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pbsoup,
Hello, sorry you find yourself here. I also had microwave ablation, for 2 residual liver Mets. I had been on Ibrance and Letrozole for close to 2 years with enough shrinkage that they barely showed on imaging. My MO suggested the ablation and I met with an Interventional Radiologist. He said response to systemic treatment was one thing he looked for to do ablation, along with lesions under 2 cm and in a reachable location in the liver. I’m only one case, and I’m not sure how common this thinking is. I just thought I’d let you know that you may be started on a type of systemic treatment before your MO refers you to anyone for a local treatment.
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Nicole, My F1 report also listed CHEK2 mutation and recommend PARPi- the drug synergizes nicely with immunotherapy and would be a good choice for a future round. Talazoparib is about 100x better than the other PARPis on the market...
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PBsoup- I’m 9 years out from my metastatic liver and brain mets diagnosis. I never consult dr. Google. He is out of date and is never positive. Don’t lose hope.
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Dear BevJen, yep, I just state facts - all Sandra's smallest "progressions" were found on ultrasound when CTs/MRIs were NED. These progressions were always confirmed by biopsies. Our ultrasound guy is one of heads of NCI radiology department, and is well known specialist in Northern Europe in radiology. Makes cryo ablations, electroporation-chemotherapy and other new surgeries himself, goes to teach and has workshops abroad (Western Europe). I know several metastatic patients (not BC) who are 10 years out from metastatic diagnosis because of him. CTs/MRIs/PETs/US are his every day life, and he says that US is very good tool in skillful hands. Further more, CTs/PETs and even modern MRIs are big load on your body, kidneys, liver. They are absolutely necessary, I understand, but I am pretty sure US could be used additionally. If your center does not do this, you could have an US specialist at another (maybe smaller?) center where you could be followed parallely. It would cost just ~200 bucks, and you would have full report of your situation in half an hour. At our NCI it is a usual thing: alternating CTs/MRIs with ultrasound, so we get observed every 1.5 months instead of 3 - I think this is a really good practice. Saulius
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Is it just me??? I have been doing research about PARP inhibitors for TNBC and I see 2 available..HOWEVER, from what I "think" I am understanding is that our MO's can only prescribe this IF we have the BRACA GENE!!!!! So really in order to get a PARP inhibitor if we don't have that gene (I don't) and are TN we need to get into a trial ... is this correct? Cross Posting
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Nicole, you can also use a PARP inhibitor if just the tumor has a BRCA or related mutation. It is common,
Welcome to the party, Pbsoup. You are not a statistic. Liver mets are serious, of course, but don't lose hope. Read the essay "The Median is Not The Message".
From ShetlandPony, in her eighth year with liver mets
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Hi Cloven, I do have a drink once in a rare while and have never noticed any ill effects. Since you're having pain, maybe you should contact your doctor and see if you can get in for an exam. I hope you're feeling better by the time you get this message!
PBSoup, you are in the right place to get tons of support and solid information. I have been metastatic for 6 years and have had liver mets for the past three.
Saulius, that is really interesting and informative! I only get CT scans every 3 months. I've never had an MRI of my liver and I haven't had a PET scan since 2018. The only ultrasound I have had was when I had an ultrasound-guided liver biopsy two years ago. I am at MD Anderson. My doctor has been practicing for over 40 years and he is very old school and conservative. I feel like he is no longer invested in aggressively pursuing treatments for me but is instead patting my hand and getting me to accept the inevitable. I am very much a realist but I don't like the idea that someone has given up on my situation. I have never had any pain, ascites , or jaundice. I run all of the family errands , cook most of our meals do light housework and help take care of our many cats and dogs. I'm not ready to lie down and give up. I think I will know when that time comes and I know sometimes it comes very quickly and unexpectedly, but I'm not there yet.
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Dear Katty, I am absolutely against giving up on someone. If I'd be a MO, I'd kick out all the doors and read/study/learn/practice without sleep to help my patients. While Dr. Rosenberg and a few others speak of cures for metastatic cancers and really cure them (5-10 years disease free without any treatment), others try to convince us it is incurable - that is so bizarre. Much is yet to learn and discover here but I am sure today it is possible to beat back this disease. Judy Perkins, Barbara Bigelow, and more mBC patients live disease free thanks to modern treatments, and the cause why treatments worked is more or less known. The drug-treatment arsenal is HUGE today. We have to push for better outcomes, better care, deeper analysis of every case, because they are possible today.
Saulius
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FOR THOSE INTERESTED IN PARP INHIBITORS INFO (LIKE I WAS) i got a GREAT easy to read explination in a FB group...
PARP inhibitors are targeted therapy for BRCA1/2 mutated patients. BRCA can be a germline (hereditary) DNA mutation, or it can be somatic (acquired), which means it's not in a person's DNA, it's only found in the DNA of the cancer cells. The reason for not using PARP inhibitors for those who are BRCA-negative is because it if the DNA damage repair gene (BRCA) is functioning properly, the targeted therapy would likely not work for that person. In other words, there's no need to repair something that isn't broken (BRCA works properly, not mutated). I know this is a long explanation. So, if you do not have a BRCA mutation (germline or somatic), exposing you to a PARP inhibitor would likely not stop your cancer from growing/spreading. It would be a treatment failure that potentially allows your cancer to progress.Using an everyday repair analogy - if your car stopped running because the motor was broken, replacing your tires wouldn't "fix" the broken motor. Even if your tires aren't in good shape, replacing them won't get the motor running. Using a PARP inhibitor for someone who doesn't have a "broken" DNA repair gene (BRCA 1/2) would likely not kill their cancer, because BRCA mutation is not what's fueling the growth, or allowing the cancer cells to continue living.Dana Farber does these cute little science videos, this one explains how PARP inhibitors work. The video is embedded in this article: https://blog.dana-farber.org/.../how-do-parp-inhibitors.../
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Saulius, thank you so much for that pep talk! If Halaven fails, I believe the only conventional treatment left for me is afinitor/aromasin. I may have to stop taking Halaven because my neutrophils are not recovering as they should and two of my liver enzymes skyrocketed after my second treatment. That was on a slightly reduced dose. So if my blood work is okay on Monday, I will have a third treatment, I believe at 50%. I'm keeping my fingers crossed!
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Katty so sorry about your neutrophils are you taking the Neulasta and grannix??? I do and mine are fine....
FYI my PET is moved up the 19th Nov.
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Nicole I am so happy that your pet has been moved up by 10 days!!!
I asked my doctor last week about neulasta and he said it wasn't a good option because of my dosing schedule. If I am still having problems after my next reduced dose infusion, then I will press him about it again.
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Katty, my counts were low on weekly taxol and we squeezed grastofil in. Tx on Thursday, grastofil Sunday Monday Tuesday. Labs Wednesday. I was in a clinical trial during this so lots of people signed off on the protocol.
I think neulasta officially says 24h post chemo and 14 days before next chemo. I dont know if grastofil (which is a biosimilar) has same guidelines or not or if this was all off label...
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I get my neulasta after my chemo they don't wait 24 hours and never have since covid....land my counts are always good
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Hi, I'm popping in with an update since this is one of my main threads. Even though the liver mets are quiet, a new lobular breast cancer met to the transverse colon has caused a pretty bad partial blockage, so I cannot eat or eliminate properly. When I described what was happening to my onc on Tuesday, she called the colorectal surgeon in, and the result was that I did not get to go home, but straight into the cancer center hospital. Today I am on TPN (nutrition through IV) and have to drink more colon prep. My abdomen and back hurt. I am hungry and sleep-deprived. Tomorrow I have surgery, hopefully to remove the tumor and fix the blockage. Looking forward to being unconscious for a while! If the surgeon is unable to remove the tumor for some reason, she will bypass it. Picture cutting a piece out of a hose and connecting the two new ends. It turns out that robotic/laparoscopic will not be possible for my body, so it will be open abdominal surgery. I admit I am scared. I have never had in-patient surgery or a pain med pump etc. But what choice do I have if I want to keep playing? My onc told the surgeon that my performance status is good and she has meds left in her arsenal for me, so we are going for it. Once I have healed, I may resume my current drugs and add Piqray or a PARP inhibitor, if we can finagle it with insurance. Tumor genomics pending. The recent colon biopsy showed ER+ PR- Her2 1+ (neg/low).
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SP I am so sorry and hope you will do just fine and your doctors are certainly awesome and on the ball so -to-speak. Isn't it good though its her2 low....??? you can get Enhertu if needed that is at least a positive now (no pun intended) .
Use the pain pump it will help they wouldn't give it if they didn't think you would need it...you are tough and have been in this fight a long time I trust you will do very well!!!!
((((HUGE HUGS))))
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ShetlandPony,
So sorry to hear about your intestinal blockage and the discomfort you are experiencing. Hoping they will be able to remove the tumor instead of cutting out that section of your intestine. Your will to live is strong and I trust you will make it through to get on some systemic treatments that will work.
Big hugs, Susan
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SP, oh so sorry to hear of the blockage but you have a good plan. All of us are cheering for you. Take all the meds they offer! I'm sorry you're tired and hungry now, no doubt you just want to get it over with. If you're going squirrelly waiting ask for ativan. I prefer to doze/sleep through the crappy bits ...
Sending healing hugs
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