How are people with liver mets doing?
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Kabuki my mum seems to be in a similar boat. She has two lesions that are 5cm in size and a lot of smaller ones. How are you feeling? How are your liver enzymes?
My mum has no symptoms and her liver function seems to be very good at the moment.
They now want to put her on AI and Ibrance and do cyber knife and something called thomo therapy which is, from my understanding, radiation through the whole body.
I'm not sure if the oncologists here are any good but they're trying to avoid chemo for as long as possible but want to diminish her liver lesions with radiation. Her metastatic breast cancer is also PgR+/Her2- and her primary tumor was strongly Er and PgR +, Her2-.
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Kabuki, while the first treatment for ER/PR+ Her2- is often an anti-estrogen such as letrozole plus a cdk 4/6 inhibitor such as Ibrance, you are correct that chemo may be used first if there are extensive liver mets. Typically this would be a taxane. What treatments you had in the past and the results of a current biopsy can also inform the plan. Don't panic. You are ok right now. Soon you will start treatment and most people feel calmer once there is a plan. In my case I started with taxol, which was very doable and effective.
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Edited, because I was a day ahead of myself - today is Thursday
Kabuki, I had large (11.8cm, 4.7cm) +numerous tumors, all in the right lobe. My liver enzymes were elevated, but not through the roof, and I was started on Verzenio (CDK 4/6 inhibitor) + anastrozole (AI). I responded very well and I'm currently NED. I know not everyone responds the same to every treatment, but my point is that there may still be multiple options. Is it tomorrow that you get the biopsy results, or next Friday? Waiting is so hard.
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My MO says when I come back in October, after my 3 month break, she wants me to take Ixempra with Xeloda. Has anyone heard of it or taken it? I haven’t been able to find a thread here for it.
I’m also wondering about Trodelvy. Although it’s for Triple Negative I think someone on here said there’s a way to get it for ERPR +. I know it’s in clinical trials for +. Can anyone here explain it to me, again? It also sounds horribly expensive and I’ve heard it’s not covered by Medicare?
Although my body is getting a break from chemo, my brain won’t shut down. UGH. So, I guess I’ll just give-in and post an occasional question.
I’m trying to get my iron saturation up. It’s only 14%. My doc said to take Slow FE. I’m on an off- brand of it. 45 mg of slow release iron, 2 pills a day. I’ll have labs on August 18 to see if it’s helping.
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Kabuki,
Like SeeQ, I was diagnosed a year ago, but, with mets to the liver, sternum and lymph nodes. My MO put me on Ibrance and Faslodex. I was NEAD in my liver until my pet scan last week showed that it’s reared its ugly head again in my liver. My sternum lesion has also grown. So now I am off to start keytruda and taxol. There are so many lines of treatment, so hang in there! I know this is a scary time -took me awhile to adjust to being metastatic, it’s overwhelming. Stop, breathe, know that there are lots of treatments out there. You will find that this group will offer so much information and support.
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Hi Grannax,
I found this thread: https://community.breastcancer.org/forum/8/topics/866942?page=2#post_5566365 but it doesn't seem very active. I don't think many are on it.
Kabuki/Daughter, just want to send my support. I'm relatively new to this thread as my liver mets appeared on a scan in January but Xeloda knocked them almost completely back. There is hope that treatments can get things under control.
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Nicole- I am chiming in late--- just catching up with the posts. I think you getting a biopsy sounds like a good plan. I am following your situation, as you had Y90 not too long ago, had all that trouble with it, and now have 3 new tumors. I am contemplating Y90 or such local treatment and wonder if it is worth all the problems to just have more tumors pop up later. But that is what I am struggling with, and I should not compare you with me, I know. I pray for you and that you could get a handle on your cancer and get to stable. Hug
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Grannax – Your posts are always welcome! I'm ER+/PR+/HER2- and my oncologist was able to get Trodelvy approved by my insurance (Anthem Blue Cross PPO, not Medicare). She estimated that she had a 50% chance of getting it approved. Unfortunately, it did not work for me, but I had already been on 12 months of Enhertu which delivers a similar chemo. I don't know anything about the combination of Ixempra and Xeloda. I was on Xeloda as a monotherapy for about 6 months before progression a few years ago. I hope that you are feeling well enough to enjoy your beautiful family!
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Thank you all for your information and support. I stopped by the lab today and got the results. It’s metastatic breast cancer. ER+ PR-, HER 2 unclear do pending FISH study. GATA 3 Positive, diffuse and strong.
it doesn’t mention cell grade but does state moderate pleomorphism. I wonder if that means grade 2. That’s what they were in the primary.I see the oncologist tomorrow. I previously had ACT, mastectomy and radiation. I have heart failure from the red devil so I don’t know if that will limit treatment choices.
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Daughterof, I have been feeling really tired for a year and a half with no energy. Sometimes I would have stabbing pains in my right side but I thought it was from lifting or pulled muscle. I had a pain for about 9 days that wouldn’t go away and kept getting worse. I finally went to urgent care and the PA sent me for a CAT Scan. My liver enzymes and the rest of the blood work was normal. The Emergency Room physician said there was nothing wrong with me because my blood work and urinalysis were normal. If the PA did not order the scan I would have been sent home
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grannax2, I'm going to send you a pm about Trodelvy
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All - my mom was just diagnosed with Liver mets with innumberable lesions on the liver. I was curious if there are any of you who has had the CTC test done and what your numbers are and what exactly does it mean?
My mom just had one and her numbers came back at 39 per sample. She has a PET Scan tomorrow but this number seems alarmingly high from an older post I saw where people had ZERO. We do not see her oncologist until after the PET next week so I am pretty anxious. These results showing to portals before the dr is able to explain is pretty much killing my anxiety let alone my moms.
Thanks in advance for any help or direction here.
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Hi Faroutstar,
I understand how you're feeling because I'm in a similar situation as you. How's your mom handling it? Has it spread anywhere else? Do they know histopathology details or have a treatment plan?
I wish I had answers about CTC but unfortunately I'm only learning about this test now. How important is it to have this done? Should I push for my mum's doctors to do this?
Stay safe and remember to take care of yourself too. I've lost so much weight already from stress alone.
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Kabuki, Sorry for your news but think years not months. My story -liver Mets in 2002 and I’m still around! There are many new drugs that you could respond to- shrink the damn tumors systematically. Many possibilities out there. A good book to read is Radical Remission- surviving cancer against all odds, by Kelly Turner
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NinaCA- Your profile says just 3 meds in all this time? Is your profile correct? Any local therapy on the liver mets? Wow if the profile is correct. Since 2003 to liver no less.
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well the results of the pathology posted to my portal late last night. The biopsy shows a cyst that has hurtle cells that don’t look normal but can’t be confirmed to be cancerous. So I have a weird looking cyst that may or may not be thyroid cancer. Some hurtle cells thyroid cancers are benign others are not. My biopsy could not determine which this was. I already had the right line of my thyroid resented in 2003 so if I take this out, I won’t have any thyroid left and will need to take meds to replace it. I’m fine with that. I will wait to see what my MO says.
It’s always something.
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Nina your story is so inspiring. I am happy that there's someone out there who's beating all the odds of this horrible disease.
Does anyone know of a forum where I can find posts of women who are Er-, PgR+ and Her2-? It seems this type is not very common and I'd like to see what my mum's odds are with hormone and targeted therapy.
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lff, just a bit before bc I had 1/2 my thyroid resected for the same reason- those damned hurtle cells. Sorry you're having to go through this again. Hope your mo has good advice.
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Daughterof- I just became that--- ER- PR+ HER2-. I was ER+ and flipped with my latest liver biopsy. I have read it is rare. And my MO says she thinks the PR+ still makes me hormone receptor + with the hormone pathway still working to drive the cancer. I have not changed meds yet. I do not know if there is a Thread on here for ER-/PR+. I have read of 1 other poster on here that has it. Cannot remember who right now.
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Well appointment with RO and liver surgeon next Tuesday the 20th. Hear what they have to say and ask my questions. I will post after.
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Candy,
I am still confused why you are seeing the RO if you are considering local liver treatments -- such as ablation or Y90 -- to my knowledge, those are usually done by an interventional radiologist (IR)??
Good luck gathering your information. We'll all be anxious to hear.
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BevJen- When my MO mentioned Y90 or ablation or radiation (SBRT) as my next option she then consulted RO. I don't know if RO will discuss all these options or what she will discuss. Then my MO also recommended liver resection and so consulted a liver surgeon.
I have all my notes and questions written in a notebook I will take to both appointments and see who does what. Maybe good the 2 appointments are back to back---RO first, then surgeon. But, they are 20 miles apart at separate satellite locations (my cancer center has 5 locations with specialties at each one). You need ____, you go ____.
FYI---- when I looked online at my cancer center website at all the docs listed, the surgeons listed their specialties and a couple of the liver surgeons did mention "ablation procedures" when telling what they specialize in.
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candy- glad you are getting appointments with specialists. Hope you get the info you need to make the right decision for you.
Interventional Radiologist(IR) is usually the one who performs procedures such as y90/radioembolization, microwave ablation, cryoablation.
If you are interested/eligible for these procedures then you may need another referral.
We're here for you!
Dee
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Candy, You may be thinking about me. I diagnosed with ER+, PR-, HER2- bone mets. After 18 cycles of Ibrance and letrozole, an enlarging ovarian mass was determined to be ER-, moderately PR+, HER2-. I hear it's not very common. I wish I knew of a thread or good source of information for Daughterof, you, and myself. Excuse me if I'm intruding as I don't have liver mets.
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candy 678, I had the usual chemo when first diagnosed, stage 3, adrymyacin cytoxin and taxotere . When I metastasized to the liver changing from tamoxifen to the new aromatase inhibitor femara put me in remission within 6 months and it lasted 14 years. When it reappeared in the liver Ibrance had just been put on the market so I started with targeted therapy. While it was reducing in size I finally decided on ablation. I went to a liver surgeon who said he would try ablation once he went in laparoscopically. Not sure what was actually done, but I was all clear, continuing on Ibrance (total 3.5 years) until it went to small intestine, colon and liver. After intestinal surgery Xeloda put me in NED again for the past 14 months. I’m strongly ER+ which is why hormonals have worked really well for me. Take care, Nin
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dutchiris- Thank you for reminding me. My brain anymore, haha. I know there are not many of us on here that post ER-/PR+/HER2-.
NinaCA- Thank you for your post. Interesting. Your longevity was mainly from the hormonals. Yes, the liver ablation helped some of course, but then it came back to your liver (and elsewhere).
That is what I am thinking about. The ones on here that have had ablation or Y90 have had recurrences in the liver at some point after the procedure. So the procedures help for a bit, but then another met somewhere else in the liver occurs.
Wonder what the average time frame is from zapping the liver buggers to new ones cropping up???
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Candy, I can answer that question, at least my experience. My first y-90 gave me 18 months before mets that were microscopic started getting big enough to do another y-90. My second one gave me a year before I had progression in liver. I don’t know what the average is but an IR would know.
My microwave ablations are hard to interpret for me. I think the four he got are smaller but not gone completely.
But, now chemo is my only option left and all of them are failing. I just found out about a clinical trial, thanks Dee, that’s here in Dallas at my CC. So, I’m going to talk to my MO about it. It’s for a SERD, I think. Not so toxic as chemo. Of course I have tried Faslodex and it worked on my lungs but not my liver. Grrrr
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Grannax- Average progression time after the local therapies-- that is on my list of questions for the consults this week. You got, at most, 18months and Nicole had 6 months before her liver progression post procedure. Something to think about.
I hope your clinical trial is an option for you. My prayers are with you.
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Candy,
I had my first liver ablation in July 2019. That held me until Sept 2020 (but I only had one lesion removed in 2019 with the theory being that that would tamp down the other little buggers in there -- and it did.)Second liver ablation incomplete so they went back in Dec. 2020.
Yes, liver ablations, to my understanding, are buying time to further progression (although there are people on these boards for whom the procedures eliminated the problem -- another question to ask: how often does that happen? But buying time is not necessarily a bad thing. You might want to take a look at Memorial Sloan Kettering -- they have really good information about liver procedures (including for metastasis) and that might prompt more questions that you want to ask.
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NinaCA,
You said that xeloda put you into remission for the last 14 months. Are you still taking it? And what is your doc's expectation for how long you will take it? Asking bc I just finished one cycle of xeloda so wondering if it does its thing, do you ever get a break?
Thanks
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