How are people with liver mets doing?
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Nicole, I am sorry to hear about the mixed results of your recent scan. All of you ladies will be in my prayers, and I pray that God will guide the minds of the physicians to deliver the best treatments. My wife goes in for an MRI today and in a little over a week we will find out if abemaciclib plus exemestane will work. Her last scan following years on palbo plus letrozole showed stability, but her tumor markers rose significantly during the last 4 months. We are hoping the change in treatment turns things back and she holds onto stability.
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husband i am praying for good stable results .
Ok all I just got back from MO...she totally is believing now that my skin condition could be indicative of progression. We are gonna wait to scan jan 19th especially since the IR yesterday did not see anything new in liver we are hoping i will at least stay stable till then. I am due to get the 2nd Y90 on the remaining tumor and the cryoblated area in the beginning of Feb (so about 2 weeks after those scans) if the IR is able to get a biopsy then we will see what it shows...if we dont get one (for whatever reason) OR or if we get one and my status is still the same ER+PR- HER2- she wants to circle back and try endocrine therapy since at that point my liver will have had all the Y90 and if there are no new leisons there we can give endocrine therapy a try on the bone mets.
Oh i forgot to say it would be verzenio...or affinitor...
Thank you all for listening would love your thoughts
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Yes, I showed progression in the liver on my recent scan after being on Taxotere & Xeloda.
3 mo ago nothing lit up on the PET so this is disappointing
Taxol, Afinitor, Ibrance, Faslodex didn’t work at all for me.
xLee
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Well Leeee you kind of sound like me.... Ask for what I am now on...Eribulin...its an easy chemo and really targets liver mets.
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Leee, All those treatments eventually failed me, too. I began Adriamycin in March, and I have done well although nowthere are signs that it is beginning to fail. There are still a few other chemos that my MO will consider when Adriamycin fails. If you have any questions for me, feel free to send me a PM.
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Leee, All those treatments eventually failed me, too. I began Adriamycin in March, and I have done well although nowthere are signs that it is beginning to fail. There are still a few other chemos that my MO will consider when Adriamycin fails. If you have any questions for me, feel free to send me a PM.
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Leee-I am sorry for your report. Cancer just stinks! I progressed on Xeloda. If you haven’t already, A good next step would be to get a biopsy to see if you have any tumor changes or targetable mutations. Are you ESR1? Is it possible to try a clinical trial before another chemo? Hope you get a new TX that knocks down the cancer.
Kattysmith- you are so sweetly sensitive to point out Nicole’s bites and our not validating it as a true marker of her progression. I appreciate your willingness to point this out. It helped me.
Nicole- I am sorry that I did not validate your bites as a sign of progression. I was hoping for you that was not the case, but you truly know your body. Praying for a complete response to Y-90 and good direction forward. I was thinking about how even though you lost your hair on Erubulin, you tolerated it well and enjoyed your son’s lovely wedding. That ride was your first to respond-Yay!! Hoping the next TX is much longer response.
FYI- There is some interest and evidence on a triplet regimen. Afinitor, cdk4/6 and Estrogen therapy for those with resistance.
https://www.healio.com/news/hematology-oncology/20190613/triplet-therapy-confers-benefit-among-certain-patients-with-advanced-breast-cancer maybe it is a possibility but I don’t think it is standard of care yet. You could talk to your MO.
Dee
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NR, I am very much interested that your MO is considering cycling back to endocrine treatments.
Did your MO ever suspect what was driving your progression when on Ibrance/Letrozole? My MO suspects that my mutation FGFR1 amp drove progression. But she cannot say 100%. certainty.
So no antihormonal for me or CK2,4. But maybe looking at Afinitor/Aromasin down the road. Afinitor in a Mtor and shows promise with my specific mutation and will help the partner antihormonal.
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Sandi...My MO and I didn't discuss at length what caused me to fail Ibrance/Let/Faslodex. she did mention something that my ovaries may not have been supressed enough...I wound up having them out after that failed.....I do suspect part of it is that I have PDL1 10%...and I believe that is why Eribulin now worked for a bit bc it does target PDL1...
I have FGFR1 as well.... I would hate to think that my MO missed that in suggesting to cycle back to endocrine therapy?....but now you got me thinking maybe her and I both didn't think of that...hrmmm does endocrine therapy not work for anyone that has FGFR1??
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Nicole, funny you should mention PDL1. I have been thinking that maybe a completely different sort of treatment is what you need. I have been thinking that it would be good to bring up the idea of immunotherapy with your onc. The way this cancer behaves, how quickly it becomes resistant, makes me think it might be hot enough to respond to immunotherapy. I can't remember right now if liquid biopsies check TMB (tumor mutational burden) and PDL1, but if so maybe you can check it even without a tissue biopsy. High TMB is an indication for immunotherapy.
Leee, I agree with Dee that a biopsy and sequencing could be helpful at this point.
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SP ...my bad.. you just reminded me we did speak about immunotherapy a little... i thought we were going to go to Abraxane + Tecentriq next...so we discussed that... she said it is hard to get approved right now for any immunotherapy without being TNBC...however...if /when we go to abraxane she will try to get the tecentriq or Keytruda approved based on the fact that I am failing everything that works for ER+....and also because I do have 10% PDL1...and I told her about a friend that only had 5% PDL1 and she got approved...so I know she will try.
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SP-
That's a really good point. And I do think that a liquid biopsy can test for those things if they are indicated on the order slip. I only say this bc my F1 liquid biopsy did not indicate TMB, but it wasn't re-done for me because I had already had it established on my F1 tissue biopsy. But there was a place on the report where it could have been indicated. Don't know about PDL1.
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NR, I think endocrine treatment will work if paired with an Mtor if you have the FGFR1 amp mutation.
I will try to find that article that addressed it.
I am PDL1 neg, plus neg for Pk3 and Esr1 mutations..
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Nicole- Praying for your scans on Jan 19th. I am sorry I questioned your knowledge of your own body.
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Sandi...I know I do not or did not have PKi3 either....
So i would need to ask her to also combine with a Mtor inhibitor....right?
gosh now I remember she mentioned that I don't have Pk...and she said something about Mtor...hrmmm I cant remember what she said though...
I know affinitor is usually paired with exemestane> spelling... so then I would need something else with it right Mtor?
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My MO said afinitor plus aromasin would be considered in the future. Right now, my mets are in my liver and I am on Xeloda and holding stable.
I found the article from a thread I started last year re FGFR.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC68255...
I guess I can't assume the mutation drove the progression to my liver. I seem to recall JFL cautioned about making the conclusion as you really don't know specifically what causes progression.
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Nicole, I was told all.the PD-L1 assays use samples of the tumor. Also, when I was getting ready to apply for the trial, my MO and I were advised that liver samples tended to show lower levels of PD-L1 and that if we could, it would be better to get a different tissue sample. We tried for lung but couldn't get it (back then it was all necrotic) and ended up using my original breast tumor from 2017. So all this to say, you.might be more than 10%
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Very interesting Moth!!! Either way if I do get the abraxane I desperately hope she goes for the tecentriq or Keytruda approval....
Sandi...Afinitor is an Mtor inhibitor (I didn't realize that)...
Chemo brain...I forgot to tell you all the other tell tale sign for me...my bilirubin....it was all thr way down to 0.7 3 weeks ago...then last week 1.1 and now Monday 1.4
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Today's Liver MRI: No new lesions, slight shrinkage of the others since March. Slow going. Bone Scan. no mets
Fixed myself a nice cup of coffee with mocha peppermint flavoring.
Been reading about that Oral taxane (tesetaxel) plus low dose capecitabine. Wonder when it will be approved..suppose to increase PFS for those on Capecitabine. Thoughts?
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Sandi,
Yay! stable +! Great report.
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Sandi, WOOHOO for the liver MRI and bone scan results! I am doing my happy dance for you. Enjoy that cup of mocha peppermint coffee. It sounds delicious.
Hugs and prayers from, Lynne
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Nice one Sandi!
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Sandi!!! WHOOOO HOOOOO !!!!!! YES!!!!! So happy for you lady!!
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Nicole, to sum up: Abraxane + tecentriq or keytruda?? OR Afinitor (an mTOR inhibitor) + hormonal therapy, traditionally Aromasin/exemestane but can use Faslodex/fulvestrant instead (good option if the cancer is resistant to aromatase inhibitors, right?)
SandiBeach, that is good scan news! My (layman's) thoughts on a taxane + Xeloda/capecitabine for you...probably would be overdoing it since Xeloda is working. Save the taxane for when you need to call in the cavalry.
You guys (go ahead and laugh at the phrase, my British friends), I am so used to this game and in a pretty good place, so I haven't even posted when I have scans. They scan me every 9 weeks in this trial. Since I started the trial meds in February, the PETs have shown no uptake, and the CTs have shown shrinkage of liver mets. This week's CT shows them same size (why?) but still no uptake. But there is an odd note saying my heart is at the upper limits of normal size. I sent a message to my onc asking how the radiologist determined “normal" as I am a very small pony, and whether this could be a herceptin thing. I get echocardiograms but did not see the report last time. Also, the radiologist noted that my bones look demineralized and spine shows degeneration. I feel like we are holding the cancer back but my poor battered body is starting to fall apart. I just got my adrenal glands back online. I decided to start bone health supplements, adding magnesium, K2, and omega 3 fish oil (for DHA) to my D3, based on the COMB protocol for bone health. Also I need to get back to adequate exercise. Cancelled dance classes and too many days with no energy have deconditioned me. In other news, I may have mentioned, after 1 1/2 years with 7 ERCP biliary stent procedures (ILC caused a stricture), I am stentless. Last week the endoscopy guru determined that the duct was functioning well enough, having been stretched by the stents, so he removed the old stents and did not replace them. Best part of this? I do not have to have another horrid covid test in twelve weeks as I would if I were having another ERCP stent procedure.
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SP... Yes my MO said if NO new tumors at scan Jan 19th...I will then 1st or 2nd week of Feb get the remaining 1 tumor and the cryoblated area (from Oct 2019) both Y90'd.... Then yes, we will go to either Verzenio or Afinitor/Exemestane and maybe add in Faslodex (I think)... BUT if at that scan I have a bit of growth and progression (more liver mets) then we will go to Abraxane and she will try to get the Keytruda or Tecentriq with it. We will also try to get a biopsy when the Y90 is done in Feb. BTW...thank you for contributing and giving your thoughts etc I really appreciate it.
Glad your stents are out and you don't have to get the COVID test.
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Sandi- Woohoo !!!!! Happy for ya !!!!
Shetland- Hope the "upper limits of normal size" of your heart is still ok. And Woohoo on being "stentless". These treatments can sure beat up the body.
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Sandibeach, about the oral taxol + xeloda - yes, heard about it during sabcs. The xeloda was 1/2 normal dose. Median pfs benefit was 3 mos on combo
There are some slide on Twitter like here https://twitter.com/naborala/status/13374120668277...
61% experienced diarrhea. If not manageable, that's a big qol issue.
The study is called CONTESSA for anyone wanting to goog around
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So next treatment is Ixempra.
As much as I research this one was new to me.Any info and experiences appreciated!
X Lee
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Lee,
Did you read this info on BCO?
https://www.breastcancer.org/treatment/druglist/ix...
It might be a starting place for you.
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NR..I am glad you have a plan for each situation. We learn from each other in our real world treatments. I truly appreciate you sharing your knowledge. You seem to take charge of your health, gather your research and ask the questions.
SP..no stents..wow..I missed reading that. That is really good news. Also PET with no uptake and Ct with liver met shrinkage, also good news.
The heart issue..is your heart enlarged or not fully functioning? Seemed like it was a surprise for everyone. Are they considering changing or reducing meds?
I am back to walking and I even did a 20 second plank tonight. Got to start somewhere..sometime. ha
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