How are people with liver mets doing?
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arolsson - excellent news!
JFL - sorry to hear this. Agree with Cure-ious that we need the "Ascites-Be-Gone chemo" to work asap and then give you some breathing space to come up with a plan. Glad you have your parents to help with your son.
elderberry - I'll be thinking of you on Oct 17. Mine is going to be about a week after that - no date yet but it's every 8 weeks for my trial, like clockwork.
LFF - nice to hear from you! what a topsy turvy september it is!
Annamaria - tell us more about what treatments you've had and maybe update your profile diagnosis? When did you get mets to the liver? Was it a conventional surgery or interventional radiology? Have you been on any systemic treatments since? It's discouraging when things grow quickly but such quick growth also makes tumors susceptible to chemo so that might be an exploitable weakness...
I've been away camping & offline for a week, pretending I didn't have cancer at all. For a while, when driving the boat and doing my bestest to dump my adult kids off the water couch/tube thing I was pulling them on, I almost managed to forget all of this
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moth- glad you enjoyed your time away. Sounds like fun having playtime with your adult kids.
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Update from here---
I posted a long post on the Ibrance Thread about my new MO visit and latest CT scan results from yesterday's visit. You can read it there. Long story short-- possibly see a new liver tumor (small-7mm) on the CT. Going to do a liver MRI in couple of weeks to get a better look. Then repeat CT and MRI in Dec to monitor growth. No change in treatment for now.
I know so many on here are really struggling. I pause to post about a 'possible' 'small' tumor. I told my sister and she said "well it is only 7mm". So true. But the 8cm original tumor had to start out small too. Just never know.
Prayers for all of you and the struggles you are going thru.
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just want to share a story about an acquaintance.
8 years ago she fought breast cancer(Er/Pr+ Her2-) at the end of treatment she had her ovaries out and they found stage 1 Fallopian tube cancer. Back on chemo. Fast forward 2 years- Metastatic breast cancer to the liver. She had Ibrance & letrazole, Xeloda, then the cancer spread to several bones and more liver.
She was turned down at a major research hospital to move forward in a trial or novel treatment, so her home MO contacted the pharm for Keytruda to get her compassionate use (paid for) since her cancer was pdl1 positive. She took keytruda plus taxol for a year and achieved NED!!!
unfortunately this summer she got the severe lung infection SE and had to come off everything for 90 days and go on high doses of prednisone. She just got back on taxol and will have a follow up scan (1 lymph node near the portal vein of the liver lit up when she went off keytruda)
She is hoping to move over to opdivo/yervoy and get off the taxol because of neuropathy, plus she is diabetic.
This case shows that Immunotherapy can help in certain HR+ cases with PDL1! Thank goodness for her MO who didn’t give up and went the extra mile.
Dee
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candy - its always a blow to see "something new" no matter how small or large. We all go through the same fears and emotions and struggles. That's why we are here for each other. Sending prayers your way that whatever this is, your docs find the best way to deal with it.
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thanks for the story Dee. Shows how important it is for us to be our own advocates, to have MOs who understand the disease, the treatments and are willing to take a chance. Happy to have this thread to share these stories and important information.
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HopeandGratitude- You have scans tomorrow, right?
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Dee, these kinds of stories are so heart warming and encouraging for the group. We may have another treatment to try. Thank you for sharing this. So far they have data only for TNBC and not for HR+ patients.
I hope your friend continues on immunotherapy since this seems to have helped her in the past.
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Candy!!! you are super sweet to remember. It's very kind. I was supposed to but since insurance denied me a PET scan (I just had to go onto medicare advantage plan since I have been on disability and they nixed the PET). I had to go for CT scan and bone scan instead and earlier. They had to compare to CT from Sept 2019 for direct comparison. Looks like liver tumors are still shrinking and bone mets now look like they have been successfully treated so stable for now! Was a relief because I have been having strange and persistent pain under right rib cage. MO thinks gall bladder spasms....hmmm. Anyway, nothing showed up. Its a good thing so going to try to enjoy next couple months before the worry creeps in.
Of course my MO who I LOVE is leaving her practice. Sad days, but she is leaving Jan so hopefully will figure something before that. And I still have my consultant in PA who is a breast cancer specialist through and through, so I am sure things will work out.0 -
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I just noticed I have my CT scan on Sunday. Hoping that goes well. first I have to get through my kadcyla treatment Wednesday with the anemia treatment as well.
I’ll keep you poste
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HopeandGratitude- Woohoo on the good scans-- shrinking liver tumors and stable bone mets. Interesting that several of us with liver mets complain about pain under right rib cage and they say it is constipation or gallbladder. Quite a coincidence that we have pain there. I too have had discomfort in the right ribcage/under breast area.
LFF- In your pocket for Sunday's CT and your kadcyla treatment.
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Candy sorry there was some growth
Hope WHOOO HOO!!
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LFF You are amazing. I don't know how you manage to do all that. If I had had to suddenly become a teacher back when I had school age kids, it would have been a disaster.
So, I went to my first in person visit with my PCP since January. She said my mitral valve murmur is worse. She ordered an Echocardiogram, I go in next Tuesday. I actually have two murmurs, mitral and aortic . One more thing. She called it mitral valve insufficiency. 💞
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just diagnosed with liver Mets after a year with bone Mets was on Ibrance for a year will be switched to afintor. My doctor told me not to be discouraged. I have no pain from the bone or liver Mets. Still work full time it is encouraging to know some can live for many year
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Hi Smokey, welcome. Glad to hear you're not in pain and able to work. Are you ER+?
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Hi Smokey. Sorry to hear of the liver mets, but “welcome". Please know there is great group of very knowledgeable and supportive people on this thread.
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Hi Smokey, welcome. Sorry to hear you've developed liver mets. Glad you have no pain and are able to still work. You will find lots of information and support from all here, so throw out any questions you have. I had bone mets only for 4.5 yrs., but was dx in December with liver mets.
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Grannax, I have a mitral value murmur, too. Mine they call mitral value regurgitation. I'm due for another echo soon. My doctor says mine is a "two," and still pretty mild. Hope things haven't changed for the worse. Good luck with your echo.
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hi, I am Er positive and the doctor tells me there are a lot of medicine for this but it seems like every year I have progression. I was diagnosed with stage 2 breast cancer in 2018 metastic bone cancer in 2019 now metastic liver cancers week ago. I have hope because I feel so good not too many side effects and I continue to work. I hope there is a lot of medicin
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Leftfootforward, I hope your treatment went well today. If I could I would literally send you all the strength and stamina I could muster. Thinking of you and your family and hoping the rest of the week is kind to you as you await your Sunday scan.
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LFF, I can't imagine doing all you are. Hope your anemia improves and wishing you good luck on your scan.
My CT on Monday shows liver mets are stable, but progression in lung nodules suspicious for mets. MO taking me off Xeloda + Herceptin + Tucatinib and moving me to Piqray + Faslodex. A little nervous about SEs from this new treatment, but I'll take what comes if it knocks back this BC. This will be my 3rd tx change since December. And so it goes....
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Bliss- Sorry to hear of your progression and change in treatment. Hope the side effects are mild for you. Keep us informed. When do you think you will start the new regime?
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Candy, thanks. We're thinking I'll start within the next two weeks depending on how quickly my insurance approves. They approved Xeloda within a week of Rx, so I imagine they may be fairly quick with this one, too. Fingers crossed!
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Bliss- I can only imaging what you are feeling. We have hope for the next treatment giving you a lasting result and work wonders with minimal side effects.
Dee
Trying to keep up with everyone here! Scans,new plans and victories!
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Bliss: Sorry to hear news on the progression. Praying this one beats it back and gives you some peace for awhile.
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Hi all. Cross-posting this from the clinical trials thread. Update on my situation. I went to second opinion Wed, had paracentesis today and start Enhertu for HER2- low tomorrow. I am still planning to appeal my insurance and send a compassionate use request to Daichi. However, I am starting tomorrow paying out of pocket. Insanely expensive of course and I am fortunate to even have the option to at least get started with a few rounds. My alk phosphatase, liver enzymes and bilirubin are continuing to increase. No time to give metronomic oral cyclophosphamide a chance to work. This is my last best chance. If Enhertu cannot start to improve things in 1-2 cycles, I don't know. There is at least one other treatment I can try but I have no confidence it will work given I don't seem to respond to hormone therapy and targeted therapy anymore. Verzenio + testosterone. Anyway, will keep you posted on my solo HER2-low "trial" of Enhertu. 2nd opinion MO thought that if it seems to be working, Daichi may grant compassionate use. However, she doesn't think they would grant it otherwise since they have a Phase 3 trial (DESTINY-04) underway right now to test Enhertu in HER2-low. 2nd opinion MO has patients in the DESTINY-04 trial and has been seeing good, durable responses, like the Phase 1 trial reported
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Bliss - ugh, sucky news about the lung nodules. I'm curious if you had these new suckers biopsied? I'm not suggesting you should - I'm just increasingly curious about the how many people / MOs follow a strategy of testing everything new vs assuming it's same. I hope your approval comes through asap! May the bureaucracy move quickly for a change.
JFL - I hope you're recovering well from the paracentesis and that it is helping you feel better. Also fingers double crossed your compassionate access or the insurance appeal is approved and that Enhertu treats you well & quickly.Are you guys eating and sleeping ok with all this stress?
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Thanks all for the support.
Moth, I'm doing ok, but probably eating too much comfort food. Lol. Just thinking this will be a next step. The lung nodules are 3-4mm. MO didn't say, but I'm assuming they're too small to biopsy?
JFL, I so hope you're recovering well and feeling more comfortable after the paracentesis. My fingers are double crossed too that your insurance appeal is approved for the Enhertu or it kicks butt so you get the compassionate clearance. Big hugs!
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Dear Bliss, your courage and attitude when you face difficult times are extraordinary. I pray these "lung things" are just things and nothing else. I know this was probably not tried but could they leave Herceptin in place with Piqray+Faslodex? 2-4 mm are very small... are they not excluding some lung infection or side effects from some treatments?
Dear JFL, my family is with you. Enhertu must work if you are IHC+2 (that is not even considered "low" by HER2 standards). And when it works, you'll find a way to fix all these financial issues. I am so happy you are able to try this option, and that finally HER2 drugs come to Her2low people. Hopefully some of these new drugs will get EMA approval soon - for sure we would not be able to buy them but at least they could be accessed, and then maybe in a few years my country's healthcare system would start to compensate for them and give them to patients:/
Hugs to everyone, Saulius
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JFL- Hugs and prayers from here.
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