Anyone 5+ years with liver mets and ER+ Her2-?
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Bump.
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Hello All,
Yesterday was the six-year anniversary of my diagnosis with mets to liver and bones. I have never been NED, and have had active disease for the past six years, but quality of life has generally been quite good. I just started Verzenio and I'm hoping for a good response. I've had much more time (and better quality of life) than I expected six years ago. Do keep hanging in there!! (Cliche, I know, but truly we do live life one day at a time.) Wishing you well!
Judy
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Thank you Judy. Some days, I just need to hear from folks like you; especially ER+ HER- liver mets fighters.
You made my day.
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Sounds good. Just today I talked with someone from my past that I hadn't seen in a long time. I told him of my diagnosis. He asked about prognosis and when I gave him the stats his eyes teared up. But only God knows our timeline on this earth.
Thanks SchnauzerMom for posting. I am mets to liver and bone also.
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SchnauzerMom, thank you so much for posting. It is encouraging to hear from a fellow ILC patient, and one who was not diagnosed with mets de novo, even starting out stage 1. Your diagnosis is the closest to mine so far.
I notice that you have alternated between hormonal therapies and chemotherapies. Was that your oncologist’s expressed strategy? Have you any thoughts to share on what may have helped you do so well?
Congrats on six years and may Verzenio be very good to you.
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Shetland Pony, I see that we do have some strong similarities in our diagnoses. I will try to answer your questions about my treatments in the hope that the information could be useful to you. (First, a disclaimer: I have had trouble entering/updating treatment info, so there are missing dates and a missing chemo on the list as it appears, so I will correct those below.
I guess I'll list meds and the strategy (as I perceive it) chronologically.
Here goes:
11/21/1987: 1st diagnosis ILC, 4mm. lumpectomy, radiation
12/11/1989: recurrence, regional involvement, CMF (cytoxan, methotrexate, 5-FU) Tamoxifen from 1990 - 2001
7/31/2012: 1st PET scan: metasasis to liver and bones , Faslodex, Xgeva, Femara [Oncologist thought that hormonals would be a good start]
1/2013: 2nd PET scan: progression in liver, added Taxol and Avastin and continued the Faslodex, Xgeva, Femara. Oncologist still held some hope for the hormonal, but wanted to zap the liver mets with chemo.
6/2013: 3rd PET scan: liver and bones showed regression, but blood developed a form of myelodysplastic syndrome, so stopped Taxol and Avastin, but continued Faslodex, Xgeva, Femara.
11/2013: 4th PET scan: progression to liver and bones. started Abraxane, stopped Faslodex and Femara.
4/2014: 5th PET scan: progression to liver and bones, started Navelbine
7/2014: 6th PET scan: progression to liver and bones, started Aromasin and Afinitor
11/2014: 7th PET scan: progression to liver and bones (not looking too promising) , started Doxil
5/2015: 8th PET scan: regression in bones and liver, continued Doxil, had EKG, Echo, MUGA to assess heart--okay
8/9/2015-8/16/2015: hospitalized with Ludwig's angina (jaw infection), osteonecrosis of jaw
6/2016: 9th PET scan: progression to bones (a great 19 month run on Doxil!!!!), stopped Doxil, started Xeloda
12/2016: 10th PET scan: progression to liver and bones, stopped Xeloda, started Halaven
6/2017: 11th PET scan: progression to liver and bones, oncologist thought it would be worth trying Tamoxifen again since I'd had a long disease-free period on it years ago, even though none of the newer hormonals had worked for me since metastasis. We all thought, "What can it hurt?" So I started Tamoxifen!
2/2018: 12th PET scan: regression in liver and bones--tumors smaller--best PET scan I've had, continued with Tamoxifen. (I told my oncologist he's a genius,and he grinned and said "I know." He is great!)
7/2018: 13th PET scan: progression in liver and bones. Started Verzenio.
If you have read this entire post, you must be exhausted. I will think about your other question about what might have helped me, and I'll collect my thoughts and post again (be forewarned!!!)
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A belated thank you for these details, SchnauzerMom. I see you are from NE, and looking it up I see that there is an NCCN center at Buffet UNMC. May I ask if this is where you found your genius oncologist?
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Bump, hopefully there are more out there!
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bump
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Shetlandpony, I am at 26 months..also would like to hear from long term liver folks who are ER+ and HER2 -.
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SandiBeach, I am at 6 years and 5 months with liver and bone mets. Latest treatment for me is Verzenio (5 months) and doing pretty well (frequent bathroom trips necessary). Good quality of life, really. Number of treatments have failed for me, but a few have been quite effective. Very grateful!
Shetland Pony, I am sending you a PM in answer to your earlier question about my oncologist. Sorry to have not done that sooner.
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Schnauzermom, you have given me the best two presents ever..Hope and Encouragement, even with multiple treatments.
I think Faslodex and Verzenio will be my next line up. Just have to convince MO of that!
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Hi. Shetlandpony started this topic and I was hoping to see if others would respond.
Hearing from those who have reached 5 years and beyond who had liver mets at the start and are also ER+, HER2- would provide hope that there can be a longer lasting future.
So I am "bumping" it!
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Hi!
Just want to say that on Sunday past, I celebrated four years with Stage 4. Initially, I had lung, liver and probably bone spread and it’s just recently spread to my peritoneum. Still living a good quality of life although the last couple of months have been a bit tougher. I’m turning the corner with Vinorebelline now, I hope now Im managing the the side effects better. And Ihope Im still here posting next year - fingers, toes and everything crossed!
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Hello Livetosing. 4 years! That is such good news and absolutely, I plus others, expect a post from you next year.
Glad that navelbine is helping you with "turning the corner" and glad that you have good quality of life.
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Thank you, SandiBeach, for helping to keep this thread going! It has been about nine months since I started it, and I am almost at five years now. Shall I count my years starting with mets symptoms (pain) in early spring 2014, or mets diagnosis in summer 2014?
Lovestosing, congrats and welcome. Peritoneum — is it ER+ Her2- ILC?
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Reading these posts give me hope! Diagnosed denovo in April last year with bone and liver mets, luminal a. Ac and taxol seemed to clear my liver met (it was 1cm) and showed no sign of activity in December's pet scan. Just finished targeted radiation on 3 spine mets and chest after November's mastectomy. Started tamoxifen in November and hoping it will keep me stable for a while. Has anyone had long term success with chemo and liver mets? As in I'm hoping it might stay gone!! Hope you're all having a lovely day ladies.
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Hi hilifllan. You have important questions.
The best starting point is to look under Stage IV discussions for topics that specifically address the area(s) of metastases, then find topics specifically for your treatment. Folks are so kind to help you with your concerns.Some of these topics (or threads) have thousands of posts..so maybe start a few months back to read.
I have linked, hopefully, the liver topic. There is another one for Bone Mets. I just didn't know how to link 2 at a time!
https://community.breastcancer.org/forum/8/topics/...
Edited to add Bone mets link:
https://community.breastcancer.org/forum/8/topics/...
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Hi everyone!
Thanks for the good wishes for my cancerversary! I remember the day I was told that my cancer was back and it was incurable. I think I must have cried every day for at least a month and I had myself dead and buried! I certainly didn’t think I’d still be bumbling along! But here I am! Some days have been harder lately than others. To answer your question, Shetlandpony, I am ER+ PR+ but HER2 negative. I’m not sure what ILC is? Sometimes I come on here and I’m not familiar with some of the terminology. I wonder if some terms are just used in America and I live in the UK. I often see people put FISH with regard to their diagnosis but again Imnot familiar withthis
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Hilijiflan, you had asked about long term success with chemo and liver mets. I've had liver and bone mets for 6 1/2 years, which is much longer than I had feared at time of diagnosis. I've had many lines of treatment, and more success with the chemo compared to the hormonals. Right now I'm taking 200 mg of Verzenio as a mono therapy. That dose is kicking my butt, but my scan last month showed some improvement, so it's worth it. (I poop and sleep a lot, but apart from that pretty good quality of life.)
Lovetosing, (Love your name) congratulations. Our anniversaries are important! You asked about ILC. That refers to invasive lobular carcinoma. More cancers are ductal, but I believe lobular is around 15%. Keep going! Looking forward to more anniversaries!
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Schnauzermom, thanks for sharing your history. It gives me hope. I am at 4 year point with liver and bone mets from beginning and am heavily pretreated, also with more success on chemo than hormonals. Am I reading you signature correctly that you took Tamoxifen many years into your diagnosis? How long did it work? I think about trying that at some point down the road.
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Hi Schmauzermom! I am pleased you like my name. It is the best way of summing me up - I live to sing and when I don't sing, I feel low. I'm a singer/songwriter for a hobby and I have sung in a few choirs and groups.
Thanks for clearing up the ILC thing. I had a ductalcarcinoma when I was first diagnosed in 2006 so I suppose I'm ductal
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JFL, I see that we have taken many of the same meds. You are heavily pretreated, too! Which have been most successful for you? For me, it was Doxil--almost 20 months. I'd taken Tamoxifen for nearly11 years after my first recurrence in 1989. (I know that was longer than typical for the time, but there really were not alternatives, and I was staying healthy.) After progression on Halaven in 2017, my oncologist (whom I truly respect) said he thought it would be worth trying Tamoxifen again (it had been about 17 years since I'd had it). I was running out of options. There was Gemzar yet to be tried, and Verzenio had not yet been approved. Well, It worked very well for a little more for more than a year and I felt great!!
If you do decide on Tamoxifen, I wish you good results, too. For me, it was a wonderful revisit! (And now on to Verzenio, which is rougher but I'm hopeful.)
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I am coming up for 5 years since stage 4 diagnosis. Lung lesions have stalled, bone lesions have stalled, liver lesions found 6 months ago. I am on Gemzar and I feel tired but still manage to get to the gym a few times a week.
My onc is awesome and always has a trick up her sleeve! We can do this girls.
Love you all
💘
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Shetland thank you for starting this thread and for all the "bumps" people have done to keep it being seen. Thank you also for telling me about it. While I am only recently diagnosed Stage IV lung and bone I needed to see some people can make it to 5 years with liver mets.
I am wondering though why my doctors went right to Ibrance/Letrozole/Faslodex when maybe they should have hit it with chemo first since I am seeing on here that chemo really gets the mets in the organs good....I guess they would rather try the less invasive first? Which I am glad about but I just want to get these suckers out!!! lol
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IT’S OFFICIAL! I have lived five years from the diagnosis of metastatic breast cancer, five years with liver mets. A recent biopsy still shows ER positive and Her2 negative (though apparently the cancer is resistant to endocrine therapy). I want this to give others hope!
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Shetland- fabulous news
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Yeah!! Shetland, I am so happy that you can now claim boasting rights on your own topic/thread.
I am close to having liver mets dx 3 years.. New goal:I will post here in Oct 2021.
Nicole..this is off topic, but wanted to answer your question. I had emergency chemo AC. When diagnosed, both lobes showed widespread and diffuse liver mets (too numerous to count). The tumor cells migrated to lung arterioles, so I was in medical crisis and had to be treated hard and quickly. Hospitalized 3 weeks. Once stable, about 3 months, I was moved to Ibrance- Letrozole.
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Shetland Pony, so happy for you!! Congratulations!
SandiBeach, I love your new goal!
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P,S. Nicole, I did address your question on the liver mets thread where we were also talking.The answer is similar to Sandi's: We needed something fast. When safe, they start with a less toxic treatment.
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