How are people with liver mets doing?
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Bossmom, first let me say I’m heartbroken for you. You are far too young to have to be dealing with an mbc diagnosis. At least you have found this forum, and I hope it offers you support and insight.
I don’t have liver mets. But please know there is hope. You’ve just started on this roller coaster ride and it will take a while to adjust. That’s normal. Allow yourself to feel all the emotions. For one thing, it’s like you’re now taking a crash course on learning everything about this disease. With so much new information being thrown at you while you deal with every day life, it’s easy to feel overwhelmed.
For me, I learned to stop projecting myself so far off into an unknown future. I started to learn how to live more in the present and try to take it one day at a time. I’m not a big fan of doctors rattling off life expectancy statistics. I’ve found the best approach is to be open minded.
As time goes on, you’ll learn different coping mechanisms. Hang in there. Take some deep breaths. I wish you all the best, and we are here for you.1 -
how do you do it everyday? Knowing your time is ticking away? I am really grieving the life I thought I would have. Growing old, being a grandmom, seeing my 1 year old grow up. It’s all just a nightmare. I can’t believe this is happening to me. I was gearing up. Getting ready to fight and beat this and now…it feels hopeless. I can’t even look at my kids without crying. How will my husband do this without me? I had so many more plans. I thought I had 50 more years to go….the liver is just so much worse than bone mets. And I have at least 6! How come they can’t do a liver transplant or something?? I just feel like I need to do more.
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Bossmom, I feel so, so sorry that you had to join the MBC forum. I have been diagnosed with extensive liver mets in Feb this year, so still a newbie. For what it’s worth, my oncologist told me not to get obsessed with the degree of liver involvement. Yes it kind of rules out surgery option for me (at least based on the current guidelines) but she has women in her practice still going strong after 7 years. The response to treatments is highly individual, new drugs are being developed and treatment guidelines do change.
As others said, the diagnosis is a HUGE shock, feel your feelings, rage and cry. Eventually you will get through the most difficult phase but be patient with yourself.
I am still learning to cope but so far being in nature, exercising as well as immersing myself in work helps to get out of dark place.
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Bossmom- I didn't mean to make it sound like I was making light of things. I do not have kids, so it has to be 100 times harder for you. Wanting to see your children grow up, looking forward to being a grandma, etc. But I did stop my career at the age of 49. I was not ready for that. I did not have the "retirement" like I had planned. I dream about my job frequently, last night even. I see a therapist and she said I am grieving my old life. It is a grief, a loss. And I lost my health and my finances (as I am living on disability now). And I lost friends in the process.
I too thought "why can't they do surgery"? Give me a liver transplant. But this is how it was explained to me… with MBC it is like blowing a dandelion, the seeds go everywhere. If they would remove your liver, give you a new one, the cancer cells are microscopic and they cannot get them all. Even 1 rogue cell can survive. Surgery is just not an option. Yes, they can do whack-a-mole procedures (if you have looked on the Thread about Y90 and ablation of the liver mets). They sometimes can ablate a lesion or 2, but that has limits too. And you could have that procedure but then more tumors grow elsewhere in the liver.
Give yourself some grace. This is all new to you. Grieve. Be angry. Come here to vent and cry. And to learn and have hope.
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bossmom,
The following is something I read (not sure where) that I found insightful:
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I heard a talk at one of the MBC conferences that really resonated with me.A gentleman was talking about grief and coping. In particular why if affects different people differently. He said that we all have a view of what our future looks like. . .work, kids, grandkids, you name it. When we get a diagnosis like metastatic breast cancer, that entire future-vision disappears in an instant. It takes time to build a new vision of the future.
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Bossmom, you are grieving right now. This diagnosis is a massive shock. My grandmother lived to be 102, so I, too, thought I had another 50 years ahead of me. I felt so many things when this happened to me that it took at least six months to sort some of my feelings out, and I realized I had severe anxiety. My pcp worked with me to find the right meds. It was a huge help. It doesn’t dull my feelings or make me a different person; it helps take the severity off of what I feel. Some women find help with antidepressants. It’s something for you to consider speaking to your doctor about.1 -
@bossmom24, I do not have a young family so I cannot know how you must be feeling. I was diagnosed de novo with innumerable bone mets 9 months ago. The best thing I did for myself, and my family was to learn how to take one day at a time and find something, no matter how small to enjoy each day. Yes, I have planned for the future and that offers a measure of peace as well. But you are very early in process and there are supports out there that can help. The trick is finding them. You will always find support in these boards. All of my very best thoughts for you and in your pocket.
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Sending you hugs, each and every one of you! 🤗
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@bossmom24 I’m so sorry you’re here but glad you found us. I was diagnosed a year ago at age 29, de novo. My liver was absolutely full of mets. So many they’ve never bothered counting, they say “innumerable” instead. My biggest liver met was over 10 cm, it was truly the biggest shock ever.
A year in and I’ve been having a great response. That 10cm tumor has shrunk down to 4cm and is continuing to shrink. I’m triple positive so on a different treatment plan than you but I am also on hormone therapy. I completely understand it not feeling like it’s aggressive enough. I’ve seen so many women here and other various groups have amazing responses to these drugs though.
The beginning is SO hard, especially being younger. I too went from feeling like I’ll get past this to feeling so defeated once we found out it was stage 4. As much as therapy and connecting with others in these groups did help, the main thing was time. It took months to not feel hopeless and obsessing over my diagnosis constantly. I sometimes can’t believe it but I’ve just been living my life lately. I’ve gone on many vacations, go out with friends often and spend so many “normal” fun days with my husband. A year ago I would have never imagined I would feel anything other than dread but that feeling has spread further and further apart. I’m not trying to downplay the severity of our situations though. It is truly devastating and life altering news. Your feelings are so valid and this group absolutely understands them. Please feel free to reach out whenever, sending love your way ♥️3 -
Dear bossmom24, I am sorry you have to be here… but then again I am so blessed I found this community 7 years ago, a bunch of very (VERY!) knowledgeable and kind people who in many cases became my "second opinion", ,,second MO", and even friends…
I am not a cancer patient myself but I try as much as I can to help my beautiful wife who was diagnosed de novo in 2017 being 33 years old, with our 2 year old baby on our hands. 7 cm tumor out of the blue, and uncountable liver mets, liver was about to fail, AST/ALT/ALP and other numbers in many hundreds, doctors looking at us kindly but even unable to give chemotherapy at that time as it could have happened that my Sandra would have simply… died instantly. But we took that risk as we had nothing else to do… after 3 relapses and 3 surgeries (mastectomy, lymph node removal, cyberknife to lymphnodes), whole breast radiation, she is NED, and liver is now 63 months NED. Future is not guaranteed, in fact, we still get these "oh you poor things" looks everywhere we go, but life is okay, our boy is 9. Yes, we gave up many dreams (oh, how much we'd like to have more children!) but we're moving on and being together brings us… happiness.
If you would ask, I believe most of the people who are in these stage IV forums, have experienced same shock as you do but have moved on and made their lives rule over cancer, not otherwise. And you… you are gifted… just think of these 4 beautiful human beings you are bringing up - your love to them will give you strength to march on, heal, and maybe even become someone who can be cured, however elusive it may sound. Science is miles ahead from where it was even in 2017, when we started. Treatments that were offered are state-of-the art and I believe you'll do well with them. Biopsy will help to confirm, what I believe, will be same histology in the liver. Please also remember that faster disease tends to react better to treatments. Hugs,
Saulius
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@rk2020 I popped in after being away for a month and was sad to hear your news. You’ve been so helpful these last 5 years. ((Hugs))
@bossmom24 , hang in there. You’re going through a terrible time. As others have said, it takes time to adjust to the shock. You’ve come to the right place to help you get through this!
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This is RK2020. I’m posting on behalf of my wife. She has been placed in hospice and is receiving excellent end of life care. She said don’t fear hospice. She thanks everyone for the support over the years. Love Regina
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rk2020- My support and prayers are with you.
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Dear Husband of rk2020; please let your beautiful wife know that she, and you, are in the hearts and minds of those of us on this forum. I thank you so much for letting us know how she is doing. Although it’s hard to hear the news that she’s receiving end of life care, I know that these were Regina’s wishes. I’m not sure I can express how much her presence on these boards has provided such wonderful, positive support to me and many others. Sending many hugs to both of you.
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@rk2020's husband and Regina,
Regina was a bright light to all of us on in the choppy waters of MBC. She was smart, funny and loves her family! Thank you for letting us know. I am sad she is in hospice but thankful they are taking great care of her. She will be in our hearts and will not be forgotten. Regina, say hello to Ms. RRabbit when you get to Heaven ❤️Love, hugs and prayers to Regina and all who love her.
XOXO Susan
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@rk2020, thinking of you and thankful for the help you have given. I am glad you are being well cared for.
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@rk2020 I have been here only a short time, but I followed Regina's story and thank her for it. I wish you a loving and easy passage.
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Thank you, Regina's husband, for letting us know this latest update. She is loved and being held in the hearts of so many. Let her know I will meet up with her and RRabbit in our snow sled in the sky one day, singing carols and laughing like hyenas. ❤️❤️
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Dearest Regina and family, Thank you for all the support, love and kindness you have shown not only me, but so many. Regina's husband, you are so appreciated for keeping us in the know, so we can keep sending love and prayers and comfort. It's so sweet that she wanted us to know not to be afraid of hospice. I know she is in loving arms.. She will be so sorely missed.
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Dear Regina and her family, I am so thankful for the kindness, good heart and smiles that you shared with us along the way. You all are amazing. Love, Saulius
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Dear Regina and husband, I'm sort of new here, but I wish you both some peaceful moment. I'm happy she is been taken good care.
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Letting you all know that tomorrow (Friday may 31) at 12noon, ET we're hosting a special meetup on Questions around Palliative Care with Dr. Joe Straton, a specialist. If you would like to join, register here:
https://breastcancer-org.zoom.us/meeting/register/tZAvc-CoqjwrHNL4jnVXMjOjAer-KDlYte1M
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Dear Regina and husband,
Praying for the peace that passes understanding for you both during this time. Regina, your kind support has meant so much to me.
Wendy
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Rk2020 and husband - This is the first time I've looked at this thread, and I just sadly read about RK's current situation. I don't think it has shown up elsewhere on the board, at least not where I read. Needless to say, I was very sorry to learn about her change in condition and decision to go on hospice. RK - I just want to say that I admire and respect your ability to make such a difficult decision, and want to thank you very much for all of your contributions to this board, and to me personally in your communications. I will always remember you and be grateful for having had the opportunity to know you, even if it was only "virtually" and not real well. I want to wish you and your husband nothing but peace. Sending a warm hug too!
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@rk2020 - Today was the first day I signed up to this site. I read a lot of your posts and found them to be very informative. I too live in sunny SWFL and I also went across the "alley" recently to get a second opinion on my treatment plan from a breast cancer oncologist… probably the same one as you! I see you as a strong woman and I hope I am as brave as you when I face that tough decision. Thank you for all that you've openly shared.
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I am a 46yo single woman. I was diagnosed with IDC of the right breast in July of 2023. They found 2 spots on my liver during the PET scan, but they couldn't do a biopsy on them because they were too small. I went through chemotherapy (AC and Taxol), then surgery (lumpectomy and reduction on both sides; also, dissection of lymph nodes during lumpectomy… found only one positive lymph node and it was removed), then radiation (external targeted for around 33 days with a boost the last 5 days).
In December, after chemo but before the surgery and radiation, they did an MRI and found no lesions in the liver. It was assumed that either the lesions were cancerous and the chemo got rid of them or the lesions were just regular "blemishes" and they healed on their own. In April, after surgery but before radiation, they did a follow up MRI and found 4 new lesions on my liver- this time, 2 of them were big enough to biopsy. They tried to biopsy both but were only able to access one of them. It was positive for the same cancer found in my breast (ER+ PR+ HER2-).
I am now on my first cycle of Kisqali (600mg) and Letrozole (200mg). They want to give me a Lupron injection monthly to be sure that my one ovary (the other was removed years ago) will no longer produce estrogen. I haven't had a period since September of last year— doctors say it was "chemo induced". I feel as though I may already be in menopause… I've had night sweats and daytime hot flashes over the past few months. I am hesitant to get the injection because it will be yet another chemical thing poked into my body, perhaps unnecessarily. I am supposed to see the local oncologist in about a week to discuss my concerns about the Lupron injection. Has anyone else on Kisqali and Letrozole (or anything similar) decided to not get the Lupron (ovary suppression) injection? If so, what were the results?
Also…
I am a middle school teacher. I took a leave of absence last August, the day before chemo started, and I haven't returned to work. They honored my leave for the remainder of the school year but expect me to return to work this August. The medicines I am taking are known to cause neutropenia. I worry about being around so many students and teachers at the risk of getting sick. Has anyone else on these medications (Kisqali and Letrozole) safely worked a job where they are around so many other people? Will my blood cell counts eventually normalize over time (and therefore I will only temporarily be at risk and maybe can ask for an alternative position for now)? I have considered going on disability but I live alone in a very expensive city and I don't think I can afford it. Also, I need the medical insurance that my current workplace provides.
Any insights or information would be very helpful. I'm accepting words of encouragement as well :)
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Dear @choosinghope,
We want to send you a big warm welcome to the community forums. We're sorry to hear about your circumstances, but we sincerely hope the support we can offer will be a great help to you.
Regarding your current treatment, we have a dedicated thread about Kisqali and Letrozol where you can connect with others who are undergoing similar experiences. We thought you might find valuable insights and support there too. You can join the conversation here: Ribociclib/Kisqali with Letrozole - Any one on this combo?
You might also be interested in reading about others' experiences with Lupron in this discussion called After first shot of Lupron.
Hope this helps! Please, come back to let us know how you're doing. We're wishing you all the best and sending you lots of positive energy.
Warm regards,
The Mods
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Hello, and I'm sorry you find yourself here. I have bone Mets, not liver, but thought I could speak to a few of your questions/concerns. I do not believe they would support your not receiving the Lupron shots. The letrozole is to stop as much estrogen production as possible from secondary sources in your body, but the ovaries are obviously the main source. For premenopausal women, this means ovarian suppression, or removal, is part of treatment. I was premenopausal at diagnosis and had one Lupron shot, then chemotherapy, which stopped my cycles, then I had my ovaries removed after completion of AC-T chemo.
I have been on letrozole and Kisqali since April of 2022. During that time I have continued to work at my local public library. I am frequently neutropenic, but it has not caused me any issues. I have not had an increased incidence of illness or infection. I also travel regularly, with no ill effects. I take good care of myself and am generally healthy, except for the cancer!
If you like your job, I would encourage you to keep at it :)
Maureen
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Thank you so much for sharing your story and information. I am leaning more and more towards the Lupron or ovary removal. I want to give my body the best chance as possible. I am just not sure I am ready for another surgery! They had to go back after my first surgery (lumpectomy) to clear the tumor margins. Ugh.
It is encouraging to hear that you are a librarian and have had little trouble with illness. I do want to go back to teaching. I told myself that, if I do go back, I promise to not work as hard (as before the C). I enjoy helping my students learn and trying to find ways to help them understand key pieces of information. I definitely still worry about getting sick… I used to get sick multiple times a year prior to the C, despite washing my hands all the time (I have sinks in the classroom) and not touching my face. I guess I can try teaching for a while and ask for accommodations, like installing an air sterilizer in the classroom and requesting breaks as needed.
Thanks again!
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