How are people with liver mets doing?
Comments
-
Dear Pbsoup, I'd go for option 1 (capecitabine) with some local treatments. Local treatments to liver could be SBRT radiation, brachi-therapy (insertion of radiating elements into tumors), like Y90, or even cryo-ablation. I know here in Lithuania, cryoablation is very popular and pretty effective. If liver sites are accessible, I'd go for cryoablation or SBRT (quicker to plan and easier to implement than Y90), what do you think?
Dear daughterof - many people are always afraid of chemotherapy but you should not be. Any drugs that we use for many diseases (bacterial, fungal, etc.) are chemotherapy by definition and have side effects. There are many people in these threads who took AC and maybe they could chime in on SE specifics but if your mom is still of good health, something must be done quickly and maybe AC could be that magic bullet?
Dear Nicole, how are you - you have been recently more active in clinical trials' thread but... how are you?
Hugs to everyone,
Saulius
0 -
pbsoup - I agree with others that #1 sounds like a decent option. I'll also chime in on #3, as I'm currently on Elacestrant (ORSERDU). I would say it is the easiest drug I've been on thus far - one daily pill and minimal side effects. I've been on it for about 2 months. I'm not sure about effectiveness for my liver based on scans yet, but my usual bone marker of alk phos has dropped to normal and tumor markers have stabilized. Unfortunately, I am probably going to have to add another drug or change my regimen because I now have skin/breast spots that are triple neg (these were present before I started ORSERDU but we wanted to see if possibly the receptor status test was incorrect and they would respond to ORSERDU - they have not).
0 -
pbsoup,
I have some new interventions for HFS symptoms due to Xeloda that I've been trying, but will wait to elaborate on the All About Xeloda thread after you x-post there.
0 -
Just realized that I could've added an update to my situation described here a few weeks ago. The March MRI showed more/larger lesions compared to November imaging although I didn't begin effective treatment until January.
Both my local oncologist and 2nd opinion doctor agreed with me staying on alpelisib (I explained this on the PIQRAY thread). I'm taking 200mg daily. My tumor marker fell from 80 last fall to 44 recently. New scans are set for early May.
In the same way that I'm reluctant to change therapy which is probably working, I'd suggest keeping PBSoup's current regimen “saving" others for down the road.
0 -
Looks like my wife is going to get the tips procedure, where they install a shunt in the liver, diverting some blood flow, to reduce hepatic hypertension that is driving her ascites. Anyone here have it done?
Might take a couple of months to get it done. If in the meantime her ascites stops on its own, we can always call it off. Apparently it is a day surgery, where they enter through the jugular vein, and install a stent that connects two blood vessels in the liver, bypassing some of the blood flow, to relieve the hypertension caused by high resistance of the liver to blood flow. This can relieve ascites, and also remove the risk of varices caused by the hepatic hypertension.
0 -
Husband I pray all goes well with your wifes procedure.
0 -
Dear all, has this site (thread part at least) already moved? Sorry, I thought it had to move in the end of March? Thanks,
Saulius
0 -
bsandra- I got this message yesterday:
We are one step closer to launching the new community discussion forums. Our team continues to make steady progress, but we wanted to let you know that the data migration is taking longer than anticipated.
For the next phase of work, we'll be carrying out a careful review of the extensive 20 years of data being migrated from the current site and testing the site functionality to bring you the best experience possible when we go live.
Some community members have asked us how you'll know when the new site is ready and available for you to use. We are going to email you right after it's live, plus when you log in, you'll notice our upgraded platform has a new look and more features than the current site.
Until the new discussion forums are live, please remember that your private messages sent and received before March 12 will all automatically carry over to the new forums, but private messages sent and received after that date through the launch of the new forums can not be moved over. And the threads you favorite during the migration period will not be bookmarked as favorites in the new forums. Please copy and paste any private messages sent and received after March 12 that you'd like to save for yourself in a separate document, and write down any favorites you want to bookmark in the new forums if you selected them as favorites during the migration period which began on March 12.
Thank you for your patience and support as we work to upgrade the technology that allows our incredible community to come together. If you have any questions, you can email us at community@breastcancer.org.
Many thanks,
The team at Breastcancer.org0 -
Ok ladies and Gents... this was my off week after 2nd treatment and my bilirubin went from 2.0 to 1.7!!!!! Praise GOD He is so merciful!!!!! I am praying this means the treatment is starting to work!!!!
I have other news... I spoke to my oncologist about what treatment would be next based on the Travera results AND based on the regular testing they did from the biopsy.... GUESS WHAT..... look at this:
The receptor testing came back on the liver biopsy and it is ER and PR negative but HER2 1+ - which means HER2 LOW.
Therefore I would like to consider doing Enhertu BEFORE doing vinorelbine - but happy to discuss with you. And that is clearly standard of care so no isssue getting it approved.
Bili levels can also be high for all of those:
------ Vinorelbine can be given full dose if Tbili is 2 or less. 50% dose if bili is 2.1 - 3. 25% dose if bili is > 3. Advised if extensive liver mets to always give 50% of dose regardless of bili. Dosing is weekly --- super annoying.
----- Enhertu can be given full dose up to 3 x ULN of bili (3.6 or less). Dosing if every 21 days.
----- Abraxane can be given up to 3.6 bili as well but dose reduced. Dosing is 3 weeks on, 1 week off or 2 weeks on, 1 week off.
Waiting on Tempus still but the results won't change our plan for next line of therapy.
Can you guys believe it I am HER2 1+ !!!!!!!!!!!!!!!!! I am writing her back to ask why she would pick Enhertu over the Vineorlibine bc according to the Travera I came up 100% to the Vine... and even though they didn't have Enhertu to test against they had something similar and that showed a 68% response....
Anyway thoughts?
0 -
nicolerod, we're so hopeful with you!!! Yes! Yes!
0 -
Dear rk2020, thank you so much! All the forums that I visit got a bit quieter, so I thought everyone moved out and I was left alone:)P
Dear Nicole - yes, you made my day! Regarding TDXd vs Vinorelbine... TDXd is more targeted (because it is an ADC!), has bystander effect to kill adjacent cells, and also has proved to be pretty effective within CNS. One of questions to care providers would be whether vinorelbine crosses BBB well? As far as I know, vinorelbine has pretty short mPFS but if it works on your tumors then it works and that is it. In the meantime, let's hope you continue on current treatment indefinitely, break all clinical trial records and outlive clinical trial investigators - this is my wish for you!:)
Hugs,
Saulius
0 -
Thanks Saulius... I am confused were you comparing the TDXd vs Vinorelbine? What is TDXd??? I was asking about Enhertu vs Vinorelbine? Is TDXd - Enhertu? Cureious did reply in the clinical trial thread and said PFS for Vinorelbine is only a few months where as Enhertu is 17 months... So disappointed about Vinorelbine...
0 -
Nicolerod - Something to keep in mind about Vinorelbine PFS is that those numbers are for trials where patients and investigators did not have the knowledge that Travera results give you. That is, if the trials had been screened for high Travera scores for Vinorelbine, then I'd assume the PFS would be much higher. Of course, this is just an assumption. As Saulius said, if it works, it works, right?
So happy to hear that you continue to have multiple options. I'm not sure why your doc picked Enhertu over Vinorelbine, but I think more and more docs are jumping on the ADC (antibody-drug-conjugate) bandwagon.
0 -
Nicole, that news makes my day!
0 -
I love hearing all these positive stories!
I was diagnosed in Feb of this year with TNBC and my lumpectomy is scheduled for this Friday (2 days). I’m in this thread because last summer I had back issues and they did a CT scan. The dr. at that time mentioned some spots on my liver but I was so preoccupied with dealing with my back that I forgot all about the liver spots. I just remembered last week and my surgeon is going to schedule a test to look closer at those spots.
I feel in my heart that it’s nothing but I’m also a realist. I’m glad you are all here to share your story and your journey. I’m not investing a lot time or energy on this until I know for certain. I’m trying to just stick to the facts.
Thanks again!
0 -
jsniffs - I’m with you regarding Nicole’s post. I’m not sure I would be able to ignore Vinorelbine‘s high Travera score.
0 -
Great news Nicole. Take anything that works! As someone who has run out of options, even a short PFS is something and as Saulius so aptly put it, i it works it works!
Wishing you continued success!
0 -
Justagal.... I am stunned that you "just forgot about the spots in your liver" obviously you or your doctors are not concerned and do not think you have Stage 4 /liver mets. You are not confirmed Stage 4...so you are not suppose to be posting in the Stage 4 ONLY group. Please read the rules and be considerate. Thanks.
0 -
Hey Jsniffs and Sadie and RK... thanks for the post. J- the trial I am in right now is an ADC.... I know what you mean about that "bandwagon" I really felt the who community oncologists etc felt this way with Trodelvy and it is literally FAILING for a LOT of people
. (myself included) but I know a lot on FB that are failing it. I think they hype up the ADC and especially did for those of us that are TNBC... Sadie that is something to consider about the PFS and the people in the trials I didn't think of that I hope Cure- will chime in here. 0 -
nicolerod while you don’t know any surrounding circumstances of of why I forgot or why there has been no follow up, I apologize that I posted in the wrong thread. It will never happen again.
0 -
Dear Nicole, sorry, my bad - if I use brand names, then brand names like Enhertu-Navelbine, if drug names, then TDXd-Vinorelbine. It is confusing, I know:/ And a very strong point has been made here - if clinical trial would be conducted for high Travera-like score population, PFS would be much much longer! Anyway, I am very happy that both these two drugs are available and possibly a magic bullet for you!
Saulius
0 -
Much like pbsoup, I am looking at my next treatment. Thank you for sharing your thoughts and insight!!
Dx metastatic 1/2017
ER+ PR-, HER2 low
5 yrs on I/F......yay that was a good run!
6mo afinator/Aromasin
6mo afinator/tamoxofin
In nov onc and I theorized i am likely endocrine resistant and the afinator never really worked as my markers and PET results continued to climb modestly. So I went off treatment as the next would have been xeloda and she thought my disease burden was too low for such a strong drug. 4 mo later PET shows many new bone sites, progression in existing sites as well as new mets to the liver....ugh, guess we were wrong about Afinator.
Options seem to be:
1. Xeloda
2. Elacestrant and maybe Ribociclib?
3. Verzenio alone or with Elacestrant?
4. A trial?
Wondering if Xeloda could reduce the efficacy of the CDKs or if it would be better to put more time between that last SERD and Elacestrant?
Also wonder about
FES PE
Trravera
With much gratitude for the generous sharing, study and translation of this path we are on.
Cross posting on the trials group.
Hugs, Allison
*Really trying to live each day as it is new and can bring miracles!
0 -
perky2020,
After progressing on Affinitor and Fulvestrant (got no benefit), I started on Xeloda in Dec. I also have the ESR1 mutation based on a liver biopsy last Aug. My MO initially talked about Elacestrant as a possible treatment option once it got FDA approval, but she has never brought it up again. I have scans early May and will see my MO so, depending on the outcome of the scans, I will ask about the possibility of dual treatment with Xeloda plus Elacestrant. I also have a second opinion MO from Mayo and will ask her about dual treatment with Elacestrant and any other drug.
0 -
perky2020 - I am currently in a similar situation (trying to figure out the next treatment). I am doing the Travera test to see if I can gain insight about what to choose next. I should have my results tomorrow. Among other things, the Travera test does include testing for Verzenio, Ribociclib, and a drug similar to Enhertu (Enhertu might also be an option for you since you are HER2-low).
I am currently on Elacestrant, and it might be working for some of my mets. However, I found out that I have skin mets that are triple neg, so Elacestrant would not be expected to work for those. While it might be possible for me to add another drug to Elacestrant, both my MO and I are very hesitant about this because of the lack of trial data. There is a trial studying Elacestrant in combo with other drugs (https://clinicaltrials.gov/ct2/show/NCT05563220). I'm no longer eligible for this trial because I already start Elacestrant. However, maybe this is also an option for you?
0 -
Jsniffs - thank you for your thoughtful reply! I am so sorry about all of it but especially the double whammy of the skin mets. I remember reading somewhere on this site that when a cancer changes to triple negative that is different from starting there.
Travera - good luck with the results! Hope it comes back with many options!! Do you know if one needs a tumor sample or is a blood biopsy adequate?
How is your daughter doing? I always held the days when my kids were little were some of the best...and hardest!! ♥️
Interesting study combining drugs with Elacestrant. Thank You for posting! I am not sure if I can get a biopsy but if so, that could be a good option.
My questions if anyone has thoughts please chime in!
1. Does taking Xeloda reduce the efficacy of other treatments? I know it may eliminate a potentially interesting trial.
2. Should I give more time between SERDs so my cancer would be more sensitive?
Anything else I should consider?
Thanks again everyone!
0 -
Hello Everyone!
A reminder as we are getting ready to launch the new forums:The forums will be going into maintenance mode tomorrow for approximately 24 - 48 hours. This means that the forums will not be accessible while our team works to complete the implementation of the new site.While we regret having to briefly pause the conversation in the forums, this approach is necessary to ensure the best technical experience upon launch for our members.To connect with other members while the site is in maintenance mode, please join us for one of our virtual meetups. The full schedule can be found here.
And you can always reach our moderators at community@breastcancer.org.When the new site is live and ready for our members, we will email you to let you know. You can also check back at community.breastcancer.org for updates.
We look forward to welcoming you there soon!
The BCO Team
0 -
Trying to message here - does anyone hear me?:) Saulius
0 -
Hi Saulius, I am here. I have liver mets and am getting Enhertu. I had progression in my liver on Trodlevy. I will have scans in mid May to see if it's working on them. It's been 6 months since my last scan, when I started Enhertu, but that's my choice.
0 -
Dear Denny, welcome back! Threads are still quiet but they will come into life soon, let's hope… Saulius
0 -
@bsandra and @denny10, we're so happy to see you back! If you experience any technical issues or have suggestions for a new feature or improvement to the user experience, please share them in our feedback form. Thank you!
The Mods
0
