How are people with liver mets doing?
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Dear Karpc, yes, from what I know SBRT could be considered, as well as ultrasound/CT guided cryoablation or brachytherapy. Lesion could be too big for high frequency thermoablation but who knows. It might be that the lesion has some "in situ" properties, i.e. grows alone, so it'd be good to do something locally asap without changing the treatment that has been so effective for you. It is great that there are options, now it is important that you'd have access to them. Hugs,
Saulius
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Karpc- by the other liver forum, do you mean the local treatments thread? That's where you will probably get the best first hand information
https://community.breastcancer.org/forum/8/topics/...
My mets were way too big to consider local treatment in the beginning, and Verzenio/anastrozole has them knocked out for now.
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Thank you Saulius for the helpful feedback.
Yes seeq - thanks. That thread is wonderful and full of experiencesbut it is a bit sleepy.
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My stage 4 diagosis was done from fluid taken off my lungs (thoracentisis = ER+, PR-, HER2-). SE on eribulin are getting troublesome. MO said she might need biopsy on liver mets to test for HER2 low, now that enhertu is available. I asked what that might entail & she was vague, sorta "let's talk when we get there." Ideas on what this is? needle biopsy thru skin? insert thru ureter? Just calming building fears....and prepping in case it comes up in visit next week.
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nopink- my stage 4 dx was by liver biopsy. I think mind, was typical. It was a simple outpatient procedure, u/s-guided core needle biopsy under twighlight sedation. The IR that did mine used an injected surgical foam to help apply pressure after the biopsy, and I had to lay on my right side for awhile ( 2 hours, I think) - both to mitigate the risk of bleeding. Then, I was just on light duty for a few days. The pain wasn't bad once they gave me meds for it (they weren't expecting it, and had not prescribed any in advance).
I hope this helps calm your fears.
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nopink, I had a recent biopsy (April) and they used a fine needle which meant no need for sedation and no need to lie down for two hours. Just local anaesthetic. Easy, peasy. I was a little bit sore but that went away reasonably quickly. The pathologist was in the room while the procedure was taking place to make sure they had tumour cells.
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*** Updated to reflect HER 2 + ***
Hello, posting first time on this thread. After 1 year on HP, new scans reveled some progression in liver (multiple 3-4mm lesions). Our med onc has give us an option to stay on HP for two more cycles and redoing the scans OR switching to Enhertu. How does folks feel about making the switch to 2nd line therapy? Had minimum side effects on HP and life was very close to normal. Want to stay on to HP as long as possible.
Also, assuming we switch to Enhertu now, can we come back to HP?
Thanks
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seeq &sadiesservant, thanks for the details. I thought it was something of that nature. Reassuring
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My mets are only in liver so far (for 1-1/2 yrs) and with treatment of taxol last year and herceptin, perjeta and letrozol the lesions have shrunk. Having a lot of hip pain and upper leg muscle in left side so my MO took me off the letrozol to see if that was causing the problem. Then he referred me to a liver expert at Cleveland Clinic who did MRI which concurred with past tests that I have 2 that have shrunk but would be big enough to do a liver ablation. My question is why would I do surgery when they have been shrinking? He said data shows people live longer after ablation. What have been your experiences? Im already 76. Thanks.
Bev
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karpc,
So sorry to hear about your one liver met growing. I have something similar. My two largest tumors are right next to each other but one is subcapsular. The subcapsular one in segment 7 has been growing but the other one in Segment 4 shrank and then stayed stable. I also have new lesions near segment 7. I wonder if they are of different oncotypes. I had one of them biopsied but don't know which one.
My MO is against any kind of local treatment in my liver. She believes that the treatment might damage my liver and that studies have not shown an increase in OS following local liver treatment.
Wishing you the best!
Hugs, Susan
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Well damn…. It seems like there is a trend in our group. My CT scan from Wednesday came back with some liver Mets improving and others a bit worse. TMs have also plateaued at a higher level than is typical for me. So, I’m off the Xeloda as it’s clearly no longer working and is negatively impacting my bone marrow. Must admit that I’m getting nervous as my options are getting extremely limited. My slow moving disease doesn’t respond well to chemo. So far only Xeloda has been effective and I am now estrogen resistant. Hope a clinical trial appears in my region soon!
With regards to local treatment, the Cancer Clinic is also not supportive. There are some trials looking at individuals who are oligometastatic and they may consider local treatment if all other options fail in terms of systemic treatment but otherwise it’s not something they do here. As Susan indicated, there is no evidence that it increases survival and the potential for damage to the liver is high. Ohionana, it’s a very individual choice but I wouldn’t be jumping to ablation if you are responding to systemic treatment. I would ask to see the evidence.
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kris, thanks for sharing the links Wednesday. Moth will be missed, she was a wealth of information..and I was glad to read your article. Hope you have a good weekend. Be
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Thank you so much, Bev. It was so good to see you. Hope you have a good weekend as well.
sadiesservant, I’m sorry you’ve had some progression.0 -
hey everyone.
Just checking in. I started lynparza today and hoping my body agrees with it. Being in and out of hospital has got me nervous but my MO says she puts frail men with prostate cancer on it and they tolerate it well. So here’s to hoping this is an option that agrees with me and works. My brother flies in tmr and I am nOt missing this visit. Last year he was visiting me in the hospital the whole time he was there. Is a good easy time so hard to ask for ?
Sorry to everyone who’s hearing about their own progressions. It’s so very hard especially when options are low
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b-a-p-- Come join us on the Lynparza Thread. There are a handful of us--- me, Sondra, Star. I have been on Lynparza for 1 year now. Scans remain stable. My main side effects are nausea and fatigue. They lowered my dose 3 months in due to the side effects, and that helped. But I still have the side effects and I don't want to lower the dose again, if I can help it. I hope you get a long run from Lynparza. PM me if you have any questions I can help with.
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hi candy , I was just looking at that thread and it looked a bit quiet. But I’ll make my way back over. I’m on the middle dose of 200mg/2x a da
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b-a-p-- I started on the highest dose of 300mg twice a day. Lowered to 250mg twice a day after 3 months. My MO did not ask what dose I wanted when we started it. When I told her I needed to lower the dose, she was totally ok with it. Yes, the Lynparza Thread is pretty quiet. You would think more would be on the drug. I am on a Facebook group that is on Lynparza, and it seems most are ovarian cancer patients.
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Dear All, for those who new Margaret (Moth), there's a site with many beautiful photos of her life (if you click to enlarge on the right), and you can also write a tribute: https://www.forevermissed.com/margaret-kinga-young.... I am honored to have known her. Hugs to everyone and let's continue marching on.
Your Saulius
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Thanks for sharing the link, Saulius!
So many bco people posted on the site! It's a testament to how much we value these relationships even though we are oftentimes thousands of miles apart.
Hugs, Susan
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Bsandra-Thank you for sharing this link. What a beautiful tribute to a beautiful lady. I’m so grateful to have met so many wonderful ladies on BCO but am sad that it was breast cancer that brought us together and even more sad when one of us is taken. Hugs and ❤️ to all.
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Susan - thanks for sharing about what your MO is saying since she is so well respected. My liver ablation in 2018 kept my liver clear for a few years, so I was a fan of localized treatment. But then last year I had Sbrt to one of my lung nodules that wasn’t responding to treatment and was triple negative. I ended up with a major case of pneumonia from the sbrt.
I think I’m facing the mixed tumor profiles too and it is making decisions tough. I will get a biopsy of my liver Met in a few weeks since we don’t know if it switched from er positive to triple negative. I quickly failed gem/carbo (like you, right)? I was on it for the past two months and it was a disaster and was the only treatment that did not work at all for me. I started taxol and keytruda this week. Thanks! Kar
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Had CT scans -- measurable liver tumors had shrunk, also spotty areas were fading. Rt lung looked clear & left just has leftover scarring from plural effusion which will never go away. Yay! Eribulin is working. But...neuropathy is progressing from feet up to knees. Fatigue increased from 3-4 days after infusion to 8-9.. I was spending up to 15 hrs in bed/day, some sleeping, some just laying there as I couldn't think of a reason to get up...so depression mixed with fatigue. MO recommended a break from treatment and a liver biopsy to check for HER2 low. Drum Roll, please.....MO reviewed details of biopsy from thorasentisis when MBC was 1st diagnosed (different hosp than where I now go) and found I'm HER2 low. No biopsy needed. I'll start Enhertu early Oct. She likes that drug and thinks the side effects will be more tolerable. As she said, quality of life issues are important and if eribulin causes me numbness now, it will again. That will give me 6 weeks since last treatment and hopefully the neuropathy will resolve. It has already helped my depression. And my sister comes for a visit next week (DH & I are both happy to have her). I'm going to go to the Enhertu forum and read all about it, but later, for now I'm just enjoying a few weeks reprieve.
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nopink- So glad you didn't have to get a biopsy and old info was available. Several of us are now considering Enhertu. My doc says I have to wait until there is activity on my PET before I can change Chemos- I changed from Xeloda to Taxol 10 months ago- and I can either take a vacation from chemo now even though markers are rising, or stay on the Taxol until SE get too bad and wait for increased PET activity. While everything is currently "resolved" on my PET, I have Lobular Cancer and it doesn't always show up easily. Hope you do well on this new drug that is an almost instant gold standard of care in the metastatic setting for ER+ tumors and Her2 low.
I was originally diagnosed before Herceptin had been developed and people were wondering why they got tested for Her2 if there was nothing that could be done for it, then it became VERY important to be tested so you could have this new life saving drug, Herceptin. Being tested for Her2 low never meant anything until NOW and I'm glad I have a history of it. It makes me hopeful and optimistic about new treatments.
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ninaca,
I'm with you about my excitement over HER2+ low. I was ready to throw in the towel late last year but now have more options because of the plethora of new HER2+ low and ADC trials.
Hugs, Susan
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Hello ladies, I mostly read everything written here but rarely post. Life gets busy and stressful.
I'm beyond sad to hear that some of the wonderful women I've interacted with here have passed away. May they rest in peace..
Has anyone here had stomach pain and nausea with occasional vomiting from ibrance and Letrazole? Stomach pain as in upper abdomen, not bowels. My mum has extreme pain, burping, reflux. It's horrid. She wants to quit Ibrance for it. I'm wondering can she still take proton pump inhibitors occasionally or is that a big no no? Any advice is welcome.
Sincerely, a daughter
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Im not a lady of the liver, but I felt a lot better when I had lansoprazole added to my Ibrance + letrozole regimen after surgery. I must have had some low grade acid happening. It is a PPI and there wasn't a problem with the oncologist in taking that. That being said, I think there was research somewhere about PPI use inhibiting Ibrance and how it works. So... its a bit of a tradeoff. Her extreme pain and all sounds like what I had when my gallbladder went off the rails in April. It was just awful and they got me back on lansoprazole to help deal with it (and Gaviscon, painkillers and anti-wind meds before that while waiting for the lansoprazole to kick in, about two days). I threw up a few times due to acid when on Ibrance too, usually after eating cheese. Has she tried bland diet like white rice, white crackers, banana?
Call her MO or hotline (if she has one?) in order to help deal with this. She could also potentially go down a dosage step if she isn't already on 75. There is no need to suffer like this!
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Hi Daughterof, I’m sorry that your mom is having difficulty with SEs. I had awful nausea, burping and some vomiting with Ibrance (I’m also on Letrozole). My MO prescribed Compazine and I feel much better. I hope they can get your mom’s SEs under control soon
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My Sept 1 CT scan shows more progression in my liver and lungs are acting up too. I started Erubilin on Monday; so far I have had a fever (38.1 yesterday afternoon), fatigue, mild nausea..I’m hoping things settle down. I have a week off next week to go see/meet my new granddaughter and then another infusion Oct 3 followed by a week off. Then two weeks on, one week off. How many cycles have people been getting? Has anyone had mouth sores? Fevers? I feel like I go into each new drug with cautious optimism balanced with the reality that there are less drug/treatment choices available. My MO didn’t want to wait for Enhertu approvals or a clinical trial here in Canada which tells me we had to get on it asap.
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Ann, I’m sorry you’re facing progression. It’s always daunting to start a new treatment as we’re never quite sure what to expect. For me Eribulin was very tolerable. I didn’t have mouth sores or any other major issues, just the typical fatigue. Unfortunately, it didn’t work for me so I can’t speak to the number of cycles but I do remember others being on it until it stopped working. I’m hopeful that your experience with side effects means it’s doing it’s job of beating back the mets.
I’m still in a holding pattern waiting for my MO to return from vacation. Xeloda failed and, like you, the list of treatments is getting woefully short. He should be back in a few days so I should know where he wants to go soon. Thank goodness as I’m not good at being in limbo. Bit too type A for that!
Sending hugs. Enjoy the grandchild!
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pots,
There is an Eribulin thread if you want more info. I used to be on it. For me, Eribulin was tolerable but I had mixed progression from the start so was only on it for a short time.
Hugs, Susan
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