How are people with liver mets doing?
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Dear Members,
We are so very sad to hear about JFL. Our thoughts are with her family and all of you here in the community who cared for her.
The Mods
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Farewell to another brave warrior JFL. Praying for her family.
Tanya
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My heart goes out to JFL and her family.
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The news about JFL is so sad. Prayers for her family.
Dee
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Hello Liver Metsters.
I have completed my 5th Taxol infusion. My MRI of liver shows stable disease..no progression, but no regression either. My largest tumor, 10 cm, showed a centric necrosis. My MO said that was good. But is it?
Now that I am stable, I will have the Y90 after Taxol Washout, which I believe is one week. So my IR and RO are deciding when. My IR and MO both agreed that I was a candidate for both lobes at same time.
After Y90, will either go back to Taxol or try the antihormonals again. I asked about effectiveness with the FGFR1 amp mutation as I thought this mutation would not work with AIs or any antiestrogens and CK4/6. But my MO said no documented and validated proof to that. Except, I did progress quickly on Letrozole, Ibrance, I assumed it was from this mutation. I remember JFL cautioning me that no one really knows what drives the progression. She had the FGFR1 amp mutation, too. (I will miss this woman greatly who cared about all of us. She lived as normally as she could..would not give up so easily. Hard to accept JFL is gone..)
So, I am making my list:1. Aromasin/Afinitor, 2. Faslodex 3.Verzenio. I also have a liat of the antibody conjugates and CK7, plus trials that I qualify for now or later.
Of course, going back on chemo is a real possibility as my cancer goes from 0 to 100% quickly.
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Update from here-----
Met with RO and liver surgeon yesterday (per Zoom due to sisters condition and that way I didn't have to travel to the cancer center).
FYI--- RO talked about Y90 and SBRT, and liver surgeon talked about ablations and resection. That is how they differentiated it. Also, the RO said that she controls the "payload" and the IR would be the "pilot". I have not met with the IR yet. But I guess she works in tandem with him/her.
RO said Y90 is her first option for me. She discussed Y90, which I had some knowledge of already (from here). She said she reviewed my scans and said that Y90 thru the blood vessel should be good because my tumors shows a lot of vessels, I guess. She did say that we would target segments 3 and 4 where the 4 lesions are-- those "zip codes", as she put it. She did say that my stomach is close to the area and the lower right lung is too, so they would have to be careful about the Y90. She would do the mapping first, of course.
She then discussed SBRT and that would be 5 days in a row. She said it would be less precise due to my stomach border being so close and she would have to readjust the beam each day.
Liver surgeon said may be able to do resection laparoscopically, but if it didn't work then would do open procedure--- major surgery. Was talking about me being on a blood thinner and using another thinner to try to prevent another PE (had one in May). He barely touched on the ablations. Didn't really discuss ablations.
Now, I have an appointment for a PET next Wednesday the 18th. Have not had a PET in 2 years. The RO and surgeon thought we should check out the bone mets and see if they are getting more active, or is it just the liver being active.
I need to decide on if I am going to do the Y90.
So with the mapping and then the Y90 you are essentially doing the procedure twice??? 2 sedations?? 2 groin incisions?? The mapping a practice run before the Y90 is injected??
A lot to think about. Especially with my sister in Hospice now.
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Candy,
I’m glad you finally had a chance to hear directly from the RO and liver surgeon. Hopefully you can try to process what they each said and how you feel about it and the impressions you got from them. I’m sorry I can’t add any specifics on Y90, but I know you’ve been reading posts from folks here. I do think it makes sense to check for any bone activity while considering liver treatment. If there is activity with your bones, maybe a systemic treatment can knock things back in both areas? Sending you prayers for strength as you move ahead with decisions and also support and comfort your sister. 💕
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Candy678, Such a big decision to make, all the while with your sister in hospice, how overwhelming. So hard to come up for a breath. Will pray to the Good Lord that he guides and directs you with this decision and that he will be with your dear sister
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Sandi beach- I was told necrosis is good. And stable disease is a great accomplishment in this unpredictable world of cancer. I know many MOs including mine now recommend afinitor/ai after failing a cdk 4/6 combo. I did afinitor/faslodex since I have the ers1 mutation. It is a difficult decision given that you have er- Best wishes on the y-90. You know how it helped by me some time to find my trial. Hoping the PET has no bad surprises
Candy- it must feel good to finally talk to your doctors, but also overwhelming. you have some big decisions about your own care while caring for your sister in hospice. It must be so difficult, but you seem very strong. hopefully you find encouragement to help you carry on. 🦋🌸🙏🏻
Dee
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Candy, I can answer a few of your y90 questions.
No, mapping is not a practice run. The IR actually maps the areas he will target. From this procedure he will calculate exactly how much yittrium to order. It’s essential for the next procedure.
Depending on whether he is going to target tumors in one lobe or both lobes, you will have either one or two more procedures where they insert the tiny beads of yittrium.
I had tumors in both lobes but you never have both lobes done at one time because it’s too dangerous.
Yes, you want to be out for these procedures it’s up to the IR Sometimes they just use IV sedation But they need you to be very still, understandably it’s a delicate procedure
My IR went through my wrist So much easier on the patient it is only a tiny incision You will be out when they put it in Afterwards, I had no pain in my wrist at all
I had some discomfort in the liver area and some referred pain in my shoulder area But by two weeks I was good to go
If you have more questions, just ask
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Hi Dee,
Interesting comment on the Afinitor/AI combo. My MO had suggested I could try Exemestane (I got the sense he was placating me to be honest) but he didn't feel that it would be beneficial as he's pretty convinced I am endocrine resistant at this point. I asked him about Afinitor - his initial response was that it would be hard to get approval given that I had been on both Ibrance (didn't fail - had to stop due to anemia) and Verzenio. I decided to hold off on the Exemestane as I'm prepared to fight for Afinitor if I need to and know that I need to combine it with an AI (failed on Arimidex). At the moment we are in a "wait and see" approach which I'm okay with but if there is progression your comment has me thinking that would be the time to push.... Must admit that I am nervous about Afinitor though. I know it can be a tough one.
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candy, it sounds like your team is leaning to Y90 if your PET on Wed comes back otherwise clear?
the surgery certainly seems more onerous & with the blood thinner issues makes things more complicated. Livers bleed like crazy too....
I think one thing I'd want to know is if you do Y90, can you SBRT in same area after (if it didn't work for some reason)? And can you do ablation after? Or do certain procedures limit options later?
I'd be making flowcharts of outcomes and considering the options. Also what does your MO think? Will your MO keep you on the same systemic treatment for now if you have some locoregional treatment?
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Moth- Yes, they are leaning to Y90 if the PET is clear other than the liver tumor growth we know about. If the PET shows increased activity elsewhere (bones) then we would do a systemic treatment change versus the local liver therapy so we can hit all areas with the systemic treatment.
Good point about certain procedures limiting others later. I need to ask.
MO said if we do local therapy-- Y90-- then she would keep me on same first line therapy still. But..... I flipped ER+ to ER- with latest liver biopsy. So... would I/L still work?????? That is what I do not understand. Seems I need a systemic med change anyhow.
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Hello liver metsers. Just wanted to gjve you an update on my Y90 plan in case it helps others.
I have 3 liver tumors; 2 right lobe (10 cm, 3 cm) 1 left lobe (7 cm). They grew within 8 weeks as I recovered from SBRT for a different lesion. Xeloda had failed and we did not know that.
After 2 cycles of Taxol, my MRI showed no interval changes and the largest tumor had centric necrosis. So stable.
Now is the time to have Y90 radioembolization. Because of my fast growing mets, I will stay on low dose weekly Taxol. I will have Y90 (low dose) to each lobe 6 to 8 weeks apart. The prior mapping showed no coils needed for potential leakage to lungs, stomach, intestines. I am to start a PPI (like prilosac) 3 days before Y90.
As both my IR and RO have told me, Y90 is off label use for breast cancer. So a lot of unknowns with staying on chemo while doing Y90. The goals are to kill current liver mets while preventing new ones and not shut down my liver at the same time. Whew.
I will keep you posted. I feel like I am jumping off a high diving board not knowing if there is a pool underneath.
If I go into liver failure, my DH knows to contact this thread.
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Oh Sandibeach so many unknowns. I pray for you.
I am no closer to a decision for me. I will see what the PET shows-- doing next Wednesday. But I have no idea if I should do the Y90. Yes, there are risks. And I do not know if I want to accept the risks, especially with my sister's situation. I need to be up and around-- for her now and for when things get closer for her. And for her funeral when the time comes. Do I risk the procedure, the potential complications, the down time. Do I just agree to move to a PARP systemic treatment and forego the Y90. I have no clue.
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Sandibeach - the speed at which those new tumors grew is shocking. Your diving board analogy is very relatable. I think it takes great strength to keep moving forward- even if you feel you have no other choice but to do so. I hope the y90 zaps those buggers and you stay with us for quite awhile longer.
Candy - you have no easy decisions right now. Thinking of you.
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Candy, sorry you are still “clueless “, it’s a tough place to be.
I was on Ibrance/ femara during my first y90. No problems. I think I was on Xeloda during my second one. Also, I had active mets in my lung during both.
Different IRs say different things Maybe actually seeing an IR would clear up a few things for you.
Then there’s the unknown about your sister. I feel for you during this time of grief and indecision
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Grannax- Being on Ibrance for your first Y90 did you have to pause it for the white counts? Each IR/RO is different, I guess, on what they want the counts to be for the procedure. I know I will have to stop the Eliquis blood thinner for a period of time. I worry about clot formation while off the thinner. I had a PE in May. I think if I would say YES to the procedure I would then meet my IR. No use meeting him/her now and then I say NO to the procedure. I met with the RO and she summarized the procedure and answered my questions thus far. And she said if I came up with more questions to just call her.
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Sandibeach, do you know when you will have the procedure? I'm sorry that your fast moving mets have resulted in you having to take such risks. Sending positive vibes for a good outcome with few side effects.
Candy, really tough decisions for you as well. Hope you land in a good place.
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sandibeach & candy
I was on Doxil every 3 weeks and had my y-90 in between infusions. pre op bloodwork showed ANC was low day before my y-90 so I just got a nupegen shot that day. This was at MDACC. The MO was more concerned than the IR. I am immune compromised so I was glad to have the shot, but I got a migraine from it, ended up spending the night due to high BP. I was fine the next day and flew home.
I took Pepcid and prednisone afterward. Had a little fatigue and a little liver pain, but bounced back well.
FYI- I did it unsedated with a local shot at the groin and only a little short acting fentanyl during the procedure if I needed it. I’m weird about sedation.
Dee
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Thank you everyone for your kind input.
Sadieservant, my next Taxol is Aug 17th. Y90 is Aug 25th. Then Taxol again Aug 31..
Candy..you have so much on you. We are all expected to know our disease, the treatments choices, insurance policies, scheduling specialists...plus handling our day to day lives. I will be with you as you make the final decision and I will also be with you as you help your sister.
Sandi
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Well I guess everyone is busy here. I just finished day 4 of rads to T3 and C7...I am wiped out....my goodness...I guess part of that could be the ER Oxy though.... am still also on the steroid once a day.
I am suppose to re-do the mapping for the Y90 on Monday.
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Candy, no I didn't have to stop the Ibrance prior to the y90. It was in 2017, honestly, I don't remember if my counts were low. I do remember for all of my procedures my IR did labs the morning of each y90.
I can just imagine how concerning the blood thinners would be for you. I'm pretty sure you will need to go off of it for a few days prior.
Dee, you are WAY more brave/ tough than I am about sedation. I wanted to be OUT. Lol
Nicole,praying for Monday. After what you went through with the first one, I think you are brave going into this one.
Sandi, sounds like a good plan.
I hope for each of you ,who decides on y90 , that it will give you the time it gave me. I got 1 1/2 years from the first one. One year from the second one. Of course, there's no guarantee. I'm only trying to tell my experience. There are tons of questions I would not try to answer
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Nicole- I missed something. When did you go to the er? I hate that you have to map again. Hope it is free! Hang in there sister. 🙏🏻
Dee
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Thank you Grannax..I don't know if I am Brave..or dumb...lol
Dee...I didn't mean the ER (hosptial) im sorry lol I meant EXTENDED RELEASE OXYCOTIN...lol
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Dear Sandi, Candy, and Nicole,
I'm holding all of you in my heart and sending well wishes and warm blankets of comfort and peace to wrap each of you in.
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I love you Katty thank You!!!!!
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I just learned what SUV values mean on the Pet scan. Mine are very high and I am devastated. From what I am reading, high SUV's are associated with a higher mortality rate. The 10cm liver tumor has a peak SUV of 16.1. An enlarged portacaval lympth node that is 2.1 cm has an SUV of 16.8. The 1.6 lesion on the right iliac crest has an SUV of 12.7.
I assumed because the histology was over 95 percent ER+ meant that this was a slow growing cancer. I am shocked and wondering if I should get my affairs in order. I have animals that need to be rehomed. I wish my oncologist would have gone over this with me. 7 weeks ago I was making plans for the next 5 years and now my world is crashing down.
I have to schedule a Cat scan in 2 weeks and I just don't think that the Verenzio is working. Dr Melisko said that I would feel better once the tumor load was debulked but I feel a lot worse with the vomiting, diarrhea and dizziness. I can't stand for very long. I haven't been able to eat fruits or vegetables in 4 weeks so I'm probably malnourished. In five weeks, I have turned into an invalid.
I've done a search of SUV values on this site and could only find 2 members that had numbers close to mine. It looks like this high is an anomalily.
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Kabuki, many of us don't have PET done - I never have - so we have no idea what our SUVs are. My dr uses CTs and occasionally an MRI.
Usually we look at the Grade to tell us how aggressive the tumor is - it has nothing to do with the ER or other hormone markers. Grade is wha tells us how fast the cells are replicating. What did your pathology say? Can you fill out your profile and make it public so we can see?
You just need to wait and see how your scan goes and go from there. Sometimes it takes a bit of trial and error to find the right drug / dose to get things stabilized and get you feeling good but you're too early in to be thinking the worst.
I have Grade 3 triple negative, super aggressive, with extremely poor outcomes and I'm still here 18 mos after dx. Aggressively growing cancers can sometimes be tricked because they gobble up everything and so they take up a lot of the anti cancer meds. One of my tumors was so rapidly growing that it outgrew its blood supply - I call him a very stupid tumor, because normally tumors take time to lay down a blood supply as they're growing. This one totally forgot about that and starved himself - that met was dead before I even started treatment.
Keep the hope. The future is not what we planned but we're still here for a bit longer
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Moth,
Thanks for responding. I had filled out my profile but did not realize that I needed to make it public. Oddly, the pathology report did not state the grade. It was grade 2 with my initial breast cancer.
This recent report states:
ER+ >95% strong
PR-
Her2 Equivocal 2+ Pending FISH study
Comment: The tumor cells are arranged in nests and show moderate pleomorphism with enlarged irregular hyperchomatic nuclei.
I don't know if this is grade 2 or 3.
I'll schedule the Cat scan today. Waiting is the hardest part.
Moth, may all of your cancer cells be stupid and outgrow their blood supply.
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