How are people with liver mets doing?
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Most likely a biopsy will be conducted to determine if this is liver mets. You can talk with your MO about which treatment he/she suggests, and it my be Verzenio. You can also look into the possibility of local liver treatments such as y90 or microwave ablation, so you may want to ask your MO about these treatments.
Good luck.
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masonsmawmaw, well that is sucky news. I think whether you biopsy or not seems to vary with MOs and care plans. Some oncologists just treat based on scans but the advantages of a repeat biopsy would be to
a) confirm it's metastatis from breast ca
b) confirm hormone markers. It is possible to change (usually lose) markers and that would change treatment. We have several people here who have flipped to triple negative.
c) consider next generation sequencing testing (Foundation, Caris, Tempus) etc to look for actionable somatic mutations like P13KCA or somatic BRCA. which would open up other treatment options.
It will partly depend too on how accessible the target sites in the liver are. Sometimes they're in a place where it's just too hard to get at them easily.
Fwiw, I've never had a liver biopsy but I've had 2 lung ones...
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masonsmawmaw,
I’m sorry to hear this know how tough this is. While I started with pleural effusion, I was primarily bone mets for four years and used to chant “no liver, no brain” before each scan. It’s a gut punch when it progresses to the liver.
I can’t help in terms of a biopsy. Like Moth, I have not had a liver biopsy. My regular MO is generally on the conservative side and isn’t wild about punching a hole in the liver given the potential complications. It seems to be highly variable whether a biopsy is recommended or not.
Just a follow up to my earlier post, I seem to be in my own personal Groundhog Day. I was able to access my scan results and the liver mets that Xeloda beat back have returned. It will be interesting to see what the temporary MO recommends.
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ugh, sadiesservant, sorry to hear that the liver mets are back. that sucks
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Dear masonsmawmaw, yes, a biopsy should come next and then maybe change of treatment? You have many options... I wonder what "innumerable" is... If you have will and power, I think you can hit it hard and be good for many years to come.
Dear Katty, wow, MD Anderson... leading clinical/research center in the world. Yes, you have all the world's available options there. Time to use them!
Dear Saddiesservant, uh, when do you have your meeting with another MO? Please keep us updated...
Saulius
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Masonsmawmaw- So sorry to hear of your news. Yes, progression is a gut punch. I have had a liver biopsy. 2 in fact. You will have to talk with your MO to see if they think there is a tumor they can go after-- in a good spot to take a sample and large enough for a good sample. I had an extra ultrasound of the specific one they wanted to go after to see about blood vessels, etc. But, as Moth said, that way they can confirm metastatic breast cancer ( though with your report it sounds pretty sure that it is MBC to the liver). Also, they can check ER/PR/HER2 status to check for a change. And for actionable mutations--- PIC3CA or BRCA. That could determine the next treatment. I am now on a PARP for my BRCA mutation seen on my liver biopsy.
The liver biopsy is an outpatient procedure. Mine was just under a local, but some have "twilight sedation". Sore for a few days after. Have to be off any blood thinners for a few days before.
Keep us informed.
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Sadiesservant, damn I hate to hear that your liver mets are back and I hope your next treatment knocks them out again!
Masonsmawmaw, I'm so sorry to hear about your potential liver mets too, if that's what they turn out to be. I have had three liver biopsies, all with twilight sleep.
Wishing you both best of luck and great care!
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Thanks all. In the grand scheme of things, it could have been worse. The biggest issue is the subcapsular met that causes pain. Nothing over the top but it's a constant reminder that the little wretch is there and growing.
Saulius, my appointment with the temporary MO is on September 24th. I know it won't matter in the grand scheme of things but.. seems like a long time to wait. Sigh.. A friend is pushing me to get in touch with my regular MO but I'm not sure. He deserves a break after what has been a pretty challenging time for all health care professionals. But, at the same time I trust him. Still pondering.. :-) I may have missed the results but didn't you and Sandra meet with her MO? Any news? Holding positive thoughts that it's just the vulnerability of the scar tissue or something else benign.
Katy, you are in a good place for treatment. Sending hope for a treatment to knock things back.
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so the news is this :
Monday I can start a reduced chemo. They warned me it could set me back like it did the first time in icu. I might be the 10% that it actually benefits and I get through it. But they remind me 80-90% it’s risky considering all my problems. They know I want to go home and maximize the time with my family. But I feel like I’ve come through so much they never thought I would , that I should Atleast try. I’m not a quitter. And we won’t know if I don’t try. However I could be cutting what time I have left short and spending more time in hospital.
I just don’t think I can’t try.
They said ibrance would take too long to kick in which is why they don’t recommend.
My bili is down to 28 which is awesome. A lot of my numbers are good. But my hemoglobin has dipped a smidge.
The fact I have clots as well is such a big factor. They did mention that it seemed like I’ve come through a lot unexpectedly so they want to honour my wishes.
I am stuck though. It’s a huge scary decision 🥺🥺🥺
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B-A-P, I'm so sorry you have such a tough decision to make. I'm no help at all, but I hear you, and I care. Sending hugs.
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Oh B-A-P.
Thank you for so vivid description of how the end is approaching like a train. I guess we all wonder how exactly it develops in the end.
Let this time be good. Let is know what you decide. I would go for it - if not you would stay in the hospital/care sector till the end so you may as well try.
It must be very scary when it becomes clear it is the end of the road. I am sending you all the warmth and support you can imagine xx
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B-A-P, ugh what a tough decision. Are they saying reduced dose or can you talk them into metronomic chemo by any chance?
There is no right answer here, just what feels right to you. Just wanted to say I'm thinking of you
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Dear BAP, you have to try. You are young, strong and determined. A suggestion for metronomic chemo is a great one. If I could choose my MO, "dr. moth" would be the one!
Now our news (thanks Sadiesservant for reminding me to post): we visited our MO yesterday, she had a look at the wound, and said "does not look like metastases" but then, like they always do, added "but who knows, we have to make sure". She's the second doctor to say same words (after our surgeon). So now today Sandra's having a full body CT (a planned one), and on the 29th - a meeting with dermatologist/skin-surgeon. I hope until we meet him, the wound heals, and that would be it. I am not entirely sure but I think I already see signs of improvement. Skin infections are not so easy to heal for HER2+ patients, as HER2 drugs block epidermis growth. We'll see, if she improves. If yes, I am relieved...
Saulius
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thanks everyone. What’s metronomic chemo? Just so I can ask them? I do think I’m going to try at the reduced dose and see how my numbers trend (as in will they drop dangerously low again). I don’t think I can’t not try. It’s either I do nothing and die, or do something and it might work (but might not agree with my body)
We know the chemo worked for me the first dose , it’s just that it also almost killed me too. But I came out of it. I have to believe that I can come out of complications again
I have a large clot too which my body isn’t handling the thinners well so we have to hold off a bit.
it’s scary. There’s a lot to consider but I think trying has to be the option.Please keep me in your minds . They are going to see how my blood work trends over the weekend. My hemoglobin was so so good , and all of a sudden started fluctuating again.
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BAP, people have no idea what scary, untenable choices we have to make on a regular basis. I often say that we are on some sort of perverse game show and we have three doors from which to choose, but all doors have tigers behind them; there's no trip to Hawaii. Some of the tigers may eat us immediately, but some are fat, happy and just want to take a nap. But they are still all tigers.
I wish you fortitude and peace in your difficult decision. I hope that your family is able to visit you in the hospital in the meantime. ❤
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I got my iron infusion on Wednesday. Turns out that most patients get worse before they feel better. The nurse explained that my body is trying to make red blood cells, now that it has the resources it needs. Yesterday I was was super tired and slept most of the day.
At least I’m on the road to feeling better. I get the next infusion next Thursday
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BAP, is the clot blocking flow of blood through the liver? Can they do a shunt, where they bypass the flow through the liver?
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B-A-P, metronimic chemo is very very low dose given continuously. Some people get a fanny pack to wear but I heard there's concerns with cytotoxic drugs being outside a hospital setting blah blah.
I will send you a PM with a pdf of a 2016 Euorpean literature review of metronomic therapy for metastatic breast cancer. If anyone else wants it, lmk and give me an email by pm
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thanks moth .
husband, the clot is blocking flow. That’s the main cause of my ascites . They have not mentioned a shunt. When I asked about anything else we can do for the clot they said no. I think they think I’m not stable enough for it . But I might ask today anywa0 -
and Katty, you’re absolutely right . There’s no right door. I think as long as my numbers are good on Monday I’m gonna give it a shot. I don’t think I can not try after being here for over three weeks getting strong enough to try. Then hopefully it’ll work for me and I may be able to go home in 8 days after the infusion.
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does anyone have any tips for getting rid of oral thrush?? I have 1 Diflucan that the MO told me to take and she also said to use a nyststin mouth wash.....my esphogitis has come back so I am in pain eating anything anything besides mashed potatoes which I think are also bad for thrush rigbt??
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well, as always check with your dr but an old standby remedy in lactation for both oral thrush of the baby and thrush on the nipple is gentian violet.
if you do try it, be warned it stains everything. It stains skin but skin staining eventually gets sloughed off. If you get it on fabric you will not get it off ever. But it's a pretty effective remedy. https://www.mayoclinic.org/drugs-supplements/genti... there are instructions for use in that article
In HIV+ pts it works the same as oral nystatin but is cheaper and easier to access https://www.ncbi.nlm.nih.gov/pmc/articles/PMC51277...
in lactation we don't recommend using nystatin and GV at the same time. But if you get no response to one treatment, we will sometimes suggest switching to the other...
you don't need to worry about what you eat - just eat what you can. breastmilk is full of sugars that feed yeasts - we still feed the baby. Rinse the mouth after eating.
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NicoleRod, you have my sympathy oral thrush is horrid. When I get it, I have been given nystatin, but it takes a while to cure it. I was told to swallow the recommended dose. Use diflucan every time you have something to eat or drink ,other than water, gargling and spitting [sorry] after a few minutes.
I now use diflucan all the time as a preventative. I hope you find relief quickly.
B.A.P. you are in a place none of wants to be. Posting here shows you have the strength to continue, sending you a virtual hug.
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oh my so much going on. I’ve been a little quiet but still checking in.
I’m hoping for good reports, SE to be resolved, time with loved ones, and wisdom for decisions. 🙏🏻
Dee
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Thank you all for your feedback! I'm honestly scared sh$$less, but I see my MO on Tuesday so hopefully she will have a good action plan. I'm afraid that I'm very limited on treatment options....to date, I dont qualify for any trials and probably never will. Red devil back in 2001 caused me to develop cardiomyapathy in 2010, and pretty much all trials exclude anyone with a heart condition. I also have only 1 kidney (had wilms tumor cancer at 6 years old). And just to add a little more fuel to the fire, I had thyroid cancer in 2011. All of this severely limits treatment options at least according to my MO. I have been so blessed throughout my life but I'm not ready to leave this earth yet! Will keep yall informed after I meet with my MO. After seeing what some of you have been through with your liver mets, my spirits have been lifted. Thank you again!
Masons mawmaw (Angie
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When I meet with my doctor after my tests in a couple of weeks I want to ask him if he's presented my case to the other doctors in the group to see if they have any insight. I know that my former MO who left MD Anderson did that a couple of times. I can't remember what those weekly meetings are called where they get together and discuss their cases and I'd like to use the correct terminology. Does anyone know?
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Katty,
Tumor boards. That's when the experts come together to discuss cases and come up with suggestions.
Hope this helps.
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Yes, that's it, thank you!
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So my tongue is REALLY WHITE and hurts on the sides.......I think its thrush? has anyone had this?
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Nicole, it sounds like thrush. Did you call your doctor ?
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