How are people with liver mets doing?
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lasunshine,
It sounds like you are following a good path with all of your testing. The liver MRI will show the liver in greater detail than the other tests you have had, so then they will be able to get a handle on what's going on with that. Since you've been on arimidex and it failed you, my guess is that the Ibrance/faslodex combo might be the better choice, if you're going the Ibrance route.
I was on an aromatase inhibitor from 2006-2019 (letrozole, aka femur, until it failed, and so when I developed liver mets, my doc put me on faslodex (aka fulvestrant) and Ibrance. As ledascout said, faslodex works differently than the other aromatase inhibitors. I agree with her about side effects from aromatase inhibitors versus faslodex/fulvestrant -- I was always sore while on letrozole, but I've found faslodex to be much easier to deal with. Ibrance has its own side effects, including fatigue.
I hope the liver MRI goes smoothly, and then your docs will have a better picture of your liver.
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lafsunsshine- Glad you had your liver biopsied. You are on the right road to get a molecular study. Good news about the clear scans. How much is the tumor burden in the liver? Is it in both lobes? There are wonderful new studies out there on SBRT as a non-invasive radiation therapy to “kill the tumors” Also y-90 or cryoablation may be options for you if surgery is not. You may want to ask your MO to get you an appointment with a interventional radiation dr and a radiation oncologist To see what your options are.
Faripari - My MDACC MO is at the League city clinic. She is fantastic about responding in my chart. Usually within a day. But that being said, some of my other Specialist docs are not so responsive. My suggestion is to call your doctor’s nurse and leave a message to at least have the PA call you back.
FYI- My ca15-3 tumor markers went down another point!
Dee0 -
LFF so glad to hear that! my whole last summer was taken up with suspected brain mets which left me with new respect for sisters going through that...
As for me, to recap I was told a month ago that the Doxil had failed (no big surprise after 7 lines...) and that now my choices were continue on Doxil because who knows, it might add time, or give up and await a "rapid decline"
Luckily for me I had privately financed a Foundation One test which revelealed a PALB2 mutuation, leading to options for Palp inhibitors. And suddenly they are actually listening to the fact that being a DES daughter probably played a role since I have ZERO family history of breast cancer and I have DES based infertility (so I will NEVER NEVER NEVER take a medicine produced by Eli Lilly,). Anyhow on to something called Lynparza.
Meanwhile not giving up on Y90, trying to seek some sort of compassionate care in the USA (am a citizen) and Playing Mass General's expensive and ridiculous "remote second opinion " game which involves sending information to las vegas and hopefully getting a reply from a doctor at MGH--ifshe has time--there went another thousand bucks, more than half my disability income. Ramen noodles all around!
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Dear Aroisson,
Glad that you got an F1 test -- not so glad that you had to pay for it, though. And glad that you found another drug to use. Hope you feel well on it.
Also hope that the second opinion comes back with more info that is useful to you. And please don't give up on local liver treatments!
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Hi all,
I have been so confused by the Y90 option. I have IR docs willing to do it, but my MO keeps strongly discouraging. And I'm nervous I'll miss my window. But people keep mentioning it here!
Anyone on this list who did Y90 with quite a large tumor burden?
Thanks,
L
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Leda,
Many MOs are afraid of local treatments such as Y90. They only know and trust systemic treatments.
A couple of thoughts:
1. are you being treated at a large cancer center? If so perhaps they could have the tumor board or, as happened at my center, the liver board look at your slides and tell you what is possible. Then your MO might be more on board.
2. I'm sorry, but I don't remember seeing how large your liver tumor(s) are. If you will go to this link on BCO, and look at the listing by kc, you will see that she started out with 13-14 cm tumors that halved after y90.
https://community.breastcancer.org/forum/8/topics/...
That thread, if you haven't been on it, talks about all sorts of local treatment for the liver, including cryo ablation, microwave ablation, Y90, SBRT, TACE, etc.
3. You had mentioned before that your MO was worried that the Y90 would "fry" your tumor and prevent other treatments. I did not have Y90 but I had microwave ablation. When I decided that was the way I wanted to go (had it about a year ago) my IR told me that it didn't preclude any other IR treatments. He says this to today. I still have some smaller lesions on my liver (both lobes) but we don't know if they are cancerous or not. We just keep watching them on abdominal MRIs, and since they are stable, we are leaving them alone. So as far as other treatments go, I think that your MO may not be that well informed.
Recently, a couple of BCO posters were talking about a recent article that appeared in the Journal of interventional Radiology that showed that IR intervention prolongs survival. If you google around a bit or search this site, you might be able to find it and show it to your MO. There are earlier articles positing the same thing, but this one was very recent. I find that when I supply my MO with some actual studies, she calms down. This is a technique that a lot of people on these boards use.
Of course, you have to be comfortable with whatever you do. I would just do your research to get to that comfort level.
Good luck!
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Thank you BevJen for this detailed response!
My onco is open to info -- I got an IR opinion at Stanford and at Kaiser Permanente (where I'm treated). She was open. But the truth is that while the IR docs are confident to proceed, they do acknowledge the risk. Especially as there is almost no data in BC. I will look for that article! My burden is quite high -- left lobe kinda covered. A couple of lesions in right. But I probably have cancer activity in 75% of my liver (not all tumors, but definitely activity).
I get scanned again in 2 weeks and plan to send slides to Northwestern, where the have the most experience treating women with BC. The one bummer is that after having totally stable billirubin since diagnosis, it literally just started trending up -- only 1.2 now, but was .6 a month ago. The IR docs will be scared of that. Might be treatment related, or maybe disease. Do another liver panel in a week... fingers crossed.
When I was in transition after Affinitor/Fluvestrant 2 months ago, I told my doc I was done and wanted Y90. She really heard me, but also made her case that y90 also a gamble and she was sincerely nervous that if we did it, systemic treatments would be off the future table. She's seen people die after the procedure... this is the fine line territory we all travel! So we decided to try Doxil + Carbo. Fingers crossed.
And again, thank you for all the info here and via PM.
L
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Look, my own IR is a very cautious individual. Doing the microwave ablation wasn't his first choice. But the Northwestern folks recommended that as a first step -- they said to only ablate the largest lesion (which was just over 2cm). As I said, I have more there (they are all pretty small) and no one really knows if they are cancerous or not bc they haven't been biopsied -- only the largest. I wanted my IR to go back in and obliterate them all, but he wouldn't do it. He said that there IS a risk in doing this stuff, and the risk is liver failure, and that since I'm stable, he doesn't want to take that chance (he was a bit more graphic than I am being). So your MO is correct that there is a risk. I'm not sure where she's conflating that risk with the systemic treatment, though.
As I said, you have to be comfortable with it.
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hello all
she had petscan 5 days back and showed progression , ibrance failed , 3 days back she was given fuslodex and xgeva injections , biopsy was done and doctor had said to wait for genetic tests and hormone status tests to come to start an actual targeted therapy.
NOW my mother is complaining of swollen abdomen , weakness and mild fevers .
i then spoke to her doctor in india and said him my concern about my mother and suggested him that if there is any way she can be given iv chemo to shrink tumors and then give her maintnance therapy like ant targeted therapy or stuff because her biospy results ER PR results will come in 5 days and the fooundation one genetic testing will come in 4 weeks , that is amoth and i am afraid things might go worse which i why i asked him about iv chemo . He said he could start ERUBULIN(HALAVEN) or vincritin or any PLANTINS .
also i spoke to the consulate of india in chicago and there are good chances she can come here soon .
EVERYONE , i need suggestions here .
should i start chemo in india ? if so then which drugs are better working among the three VINS ? PLATINS ( as in carboplatins) or halaven (erubulin) ?
halaven worked for anyone ?
wait for her to come here ?
need advice
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This sounds so complicated, faripari. Can you consult one of the oncologists you are hoping to have your mom see in the US? Call and explain that you need to get some input right away. I hope they will help you!
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arolsson
I am sorry that you are going through this tough time of financial burden and doxil failure. I am hoping you get some clues with your F1. Keep being your own best advocate! Hugs.
Ledascout
My MO was open to Y90 to reduce the tumor burden since at the time I was on my 3rd line and none of them were getting me shrinkage or control. I had 3 large tumors that were treated But also many small ones that were not treated. The big ones are shrinking and nothing lit up in my liver on the last PET. My AST and alk phos have been a little high ever since the y-90 but my bili is fine. I hope you can find resolution on how to proceed
Faripari
It’s hard to tell you what to do about your mother. Everyone responds differently to the chemos. we can offer support and tell you our stories
I often feel like this cancer journey is an emergency but in reality it’s my fears that are playing with mymind. Your sense of urgency is understandable. My advice is to guide your mother to into a treatment that gives you peace and helps her stay healthy enough to travel here if that is possible
If your mother is having ascite issues, maybe she can have that drained for comfort.
Dee
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I just read on the Ixempra thread that Jaylea is now in hospice. My thoughts go out to her and her loved ones.
Hugs and prayers from, Lynne
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50sgirl. Thank you so much for the update on Jaylea. I and others have been wondering about her.
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Monday is my 8 week CT for the clinical trial to see if we're shrinking anything. It's not too early for scanxiety is it?
There was a period of time a couple weeks ago where my fevers stopped and the MO thought that was a positive sign. Now they're back - ugh. So is that a negative sign?
Well, we'll know Wednesday. The written report is usually not avail yet but the MO gets a verbal in the morning and she's good at reading CTs on her own.
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I hate to hear that about Jaylea. May God bless her.
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Moth...unfortunately it is never too early for Scanxiety. I have my scans the 13th & 14th results 16th..and I started just today thinking..."ughhh scans are coming...I don't want to know
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Thank you for letting us know that Jaylea is on hospice, 50sgirl. I posted a note to her and Cormac on the Ixempra thread.
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BevJen- thank you for your response! It's encouraging to hear that you and Ledascout had fewer side effects on fulvestrant as opposed to the aromatase inhibitor's. I have read that fulvestrant can cause bone loss in the jaw which can lead to loss of teeth,(that kinda freaks me out),and that the shot has to be warmed 20 or 30 minutes before you get the injection and that your butt can get really swollen and be in pain for 2-3 days afterwards because of the injection.
AlabamaDee- The nodule they found was in the left lobe. The doctors haven't decided as of yet if surgery is an option. Congratulations on the downtick of the tumor marker! That is so good to hear!
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LaSunshine,
At my center, the nurse who gives the shot puts the fulvestrant into one of those warming paks (like a cold pan but only it gets warm) for literally 5 minutes and it works great. I don't think you need 20-30 minutes? If the shot stings when they are injecting it, tell the nurse to slow down until you don't feel the sting. My nurse injects each side in a little over a minute, which works for me. In a year, only one time did she speed it up just a bit, and I got a bump and some pain for a couple of days after. If you walk after you get the shot, and try to massage it a bit, you really shouldn't have too much pain. Also, as with a lot of these drugs, I take an allergy pill the day before, the day of, and the day after and that seems to help.
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50’s Girl- thanks for telling us about Jaylea - I’ve been so worried about her. So sad- such a sweet soul.
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hello everyone ,
Reaching out to hear maybe some positive information , have any one of you ladies experienced negative effects such as ascites, but when they did the scans there was no progression ?Only reason why I’m asking is because my mom is experiencing ascite and I’m wondering if it’s from her new chemotherapy Tucatinib since it does have liver damage as a side effect
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Dear Arolsson,
I am relieved to hear you have a new treatment lined up and I hope your aim of coming to the US for comapssionate care works out.
Thinking of you,
Katty
I have long-suspected that my mother was given DES, too, but was never able to confirm it. My sister was born in 1947, then my mother had two stillbirths before I was born in 1952. She would have been a prime candidate for it.
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Holyhope, how are her liver function blood tests? Low albumin? Does.she take any other medications? Tylenol? Tylenol is very bad for the liver in higher doses.
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I had a 3-month PET scan today and within a few hours the doctor called to tell me that there is considerable progression in my liver mets along with bone mets. So she is planning to add Piqray to the Femara I am already taking. Not looking forward to starting Piqray! I'll have to check that forum to learn about the side effects of this targeted drug.
A New journey begins! It is such a roller coaster!
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S3K5, so sorry to hear about your progression. Praying the new meds works wonders!
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S3K5. So so sad you had progression. I scan next week and fear the same news as I am still have pain in sacrum and liver...
Glad you sound really good though.0 -
S3K5, I am sorry you have experienced progression. I know it is not easy to hear such news. It is good that your MO already has a plan in place for you and that you are reading the Piqray thread to arm yourself with knowledge about possible side effects. I do hope that you experience few or no SEs and that the combo knocks down those mets.
Hugs and prayers from, Lynne
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BevJen- Thanks for the helpful tips, I will keep them in mind!
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S3K3
Progression stinks but you have a plan and a great attitude. Keep up the fight and prayers for good results on Pikra
Dee
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S3K5 - progression. The word we never want to hear but one we all have to face. I am.sorry to hear the news, but so good your MO is on it with plan in place. Learn all you can on your new therapy. Will be sending prayers your way that this works for you!!!
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