How are people with liver mets doing?
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Dear Regina, I wish you strength and want to tell you that we respect every decision of yours. It is a blessing to have you with us. Saulius
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rk2020, Regina- I respect your decision. My prayers are with you. 🙏
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Regina - I am so sorry to hear of further progression. You and I have been in many of the same threads and as others have shared, I also found your posts both supportive and informative. I hope that palliative care can bring you some relief from your pain and more good days than bad and may you be able enjoy the birds and your gardens.
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emac877, candy-678, bsandra, irishlove, exbrnxgrl, divinemrsm, aprilgirl1, sf-cakes, cblaurenceauthor
Too often we underestimate the power of a kind word, a listening ear, a walk down memory lane or an honest compliment - all of which have the power to change a person’s day for the better. A smile is so valuable and I’m blessed to have you all put one on my face. Thank you for caring. Thank you for your encouraging words. Thank you for being you.
You all amaze me. There is power in numbers. Together we are stronger and all you wonderful ladies have proven that over and over again.
Love, Regina
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Hello all. I recently rejoined after 8 years NED. I now have lesions on my liver. Onc is prescribing fulvestrant injection and ribociclib pill. Can anyone give a rundown on experiences, side effects, results, etc. Still new to this so looking for any info out there. Tha ks much!
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@rk2020, I have not posted often but have been reading. Your grace in adversity is inspiring. I greatly respect your decision. Thinking good thoughts your way. Kathryn
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Dear Regina, you inspire us all… to be better, to smile, to love and to appreciate every moment. Thank you. Saulius
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Dear Regina,
I've been laying low for a while and just saw your message. I'm so sorry. You've been so helpful to me through different treatments. I hope palliative care gives you some relief and you find inner peace - so needed. You'll be in my thoughts and prayers…no longer as rk2020, but as Regina.
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Dear Regina
I'm so sorry that you are at this point, but awed by the courage and grace with which you are handling it. I second every wonderful word that the other women have said about you. Your posts were knowledgeable, compassionate and very helpful to me. I understand and respect your choices and thank you for setting such a wonderful example of how to deal with decisions we will all need to make at some point.
I don't know whether you have ruled out radiation to the clivus. I had that in June, 2022 and would be happy to give you the details if you are considering it.
Love and positive energy sent your way.
Eleanora
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@eleanora Thank you for your kind words. 🩷
I would really appreciate hearing your experience with radiation to the clivus. I need the raw truth because I’m most concerned about collateral damage. I’ve already had rads to my cervical spine so I’m familiar with the mask and know I can handle that (although I sure do like it when it gets unsnapped!). I would be getting 15 sessions.1 -
Regina
I had 10 sessions over a two week period. Yes, the ugly mask is required. There were multiple things that were not explained to me, and I hope that by making you aware of them, you can avoid them. Neither my MO or RO prescribed steroids or anti-nausea meds for me and I needed both. Got those starting on Day 2. Make sure you get them on Day 1.
Radiation to the skull increases pressure that may make you dizzy, lightheaded and queasy, as well as give you double vision. I held on with both hands on stairs and did not feel that I could drive safely. These effects will all gradually diminish and eventually go away within a few weeks. None of them were at an intense level - for example I took zofran 1 hour before each treatment and again before bed, but didn't need it all of the time. The steroids continued for two weeks after the end of treatment with a one week taper at the end. The effects I can attribute to them were an increased appetite, heartburn and sleepless nights. I was given several different prescriptions for sleep and nothing worked until the steroids were done. Prevacid worked on the heartburn.
They also did not explain that, while the most intense level of the radiation beam is focused on the clivus, there is a "bounce back" effect of decreasing rings of intensity from the center out. I learned this when I developed what looked and felt like an intense sunburn on my nose and spreading onto my cheeks. When I brought this to the attention of my RO, he immediately went to the treatment area and had them cut away the section of the mask covering that area, which helped tremendously. Apparently, the mask was intensifying the effect on my face. The same bounce back will irritate your throat and it will feel burned from just above the uvula down to where it will meet the heartburn from the steroids. Milkshakes, smoothies, ice cream and ice water will be your best choices, but avoid any citrus or tomato flavors. A lemon ice pop brought me to tears. I mixed whey protein powder into the shakes and smoothies for some nutrition.
I had bald spots on either side of the back of my skull, where I assume 2 other beams entered, but the hair mostly grew back. I don't think I have any permanent negative effects from this treatment.
Sorry for the long and potentially scary description, but I wanted to give you an accurate accounting of my experience. If I were told that I needed this again, I would agree without a moment's hesitation.
Please ask any questions you like. I will be rooting for you.
Eleanora
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Hello Ladies,
I have had quite a hiatus from this site but back with the discovery of liver Mets. Right now I seem to have 3 spots about 1.5cm in diameter. I start Xeloda as soon as the drug arrives. I was originally diagnosed in late 2016 with a large brain met (which has been stable since original surgery and radiation) and bone Mets (Ibrance for 6yrs and clinical trial Ipatisertib for almost 2years). Two recent clinical trials had no response and the. The discovery of liver Mets. My bone Mets have been very painful since thanksgiving and on a lot of oxy to manage that. I would love some encouragement both about liver and Xeloda if you can as I am really stressed out.
Also I can’t figure out how to update my signature if anyone can tell me. I am having a liver biopsy scheduled currently Er/Pr+ HER2-
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@josgirl I found xeloda quite tolerable and wish I had been able to take it longer. I did baby my feet so I had to stop Aquasize for a few months but was eventually able to join class again while still taking xeloda. If you look at my signature, you will see what I’ve taken and I found Xeloda and Everolimus to be my easiest drugs.
Speaking of signatures, reach out to MODERATORS. Signatures are very helpful to me when I’m responding to posts but I don’t remember how to do it. 🤦♀️ I just know that I make my own format rather then use the signature automatically spit out by answering a few questions.1 -
Regina,
I just wanted to say that I'm thinking about you. You were one of the first people to respond to me here, and I have been touched by your kindness and support. Sending warm wishes for strength and peace to you.
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Hi everybody, I have a quesion about liver mets.
In September 23 I had 3 liver mets of 5/6 cm, and 4 small of 2,5 cm.
Now the three big on shrinked and one actually disappeared. Some of the small one got a little bigger, like 4 cm (MRI scan).
I'm on xeloda and don't feel like to give it up. Did it happen to anybody that liver mets get a little bigger and than smaller? Or it may mean that the smaller one didn't respond at all to chemo? I know everybody is different, but just checking other people experience...
I will have a PET scan to see activity before med change, and I'm so worried...
I was on ribociclib plus letrozole for 14 months, than 8 month xeloda, and despite been 90% ER+ (with no mutations at all, and HER2 score 0) MO want to do a strong chemo next line. I will look for second opinion off course...
Anybody with similar situation, with many smaller mets, had a different treatment on liver? Like surgery, radiations, ultrasounds, chemo directly in the liver...I'm disperate for any suggestion!
Thank you, and as always good luck to everybody, and in particular to Regina, wish you all the best in this difficult moment ❤
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Dear amel_83, well, could you talk to your MO about continuing on capecitabine (which is good for you, right?) and try to zap the mets that are still there with SBRT. There's chance that you are oligometastatic (from your description) and zapping them could really make things very different. What do you think? I always advertise for local treatments if they are possible…
Saulius
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hi everyone, I posted on the verzenio but thought I’d post here too- I’m not sure if it’s the verzenio or liver but do any of you have a rash on your face that looks like blemishes/ patchy/ yuck? I can’t get rid of it, it flares up and almost goes away but it’s really bothering me at the moment.
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@margesimpson, Verzenio can cause a rash as a side effect. Have you tried having it looked at by a dermatologist (potentially even one specializing in working with cancer patients)? They likely will have some idea on how to resolve it since it's their area of specialty. Palliative care is another option, since they focus on managing the side effects of treatment and improving quality of life.
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moderators, thanks for reaching out, I’m in Australia so we have to be referred to a specialist which adds a few months to the wait. Unfortunately because it fluctuates in the past I haven’t asked for one but I will at my next appointment. This last flare up has been awful.
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I am posting because I am super scared and looking for any glimmer of hope…
A month ago I discovered a lump in my breast and armpit. I had a port scheduled for this Friday to start chemo. But to everyone’s surprise a ct scan showed the cancer spread to my liver. So now I am stage IV de novo. There are at least 6 lesions. A couple are around 1.5cm and the rest are sub centimeter.
I am 39 years old. I have 4 young children. This is my worst nightmare. I went from thinking I could beat this to think I have a few years with my babies at best. I need to hear positive stories.Other than this cancer I am healthy, I have no symptoms. The cancer in my breast is HR+ and HER2- (technically low). I will be having a liver biopsy to see what the receptors are there. This is just unbelievable. I’m so scared. So far the oncologist said the plan is tamoxifen, Lupron and Kisquali. No surgery, no iv chemo, no radiation? NOTHING? She told me my diagnosis an average of 66 months of survival. this is not enough. I have a baby. She needs her mom. I want to see my kids grow up. Is this true?? Are there any other liver Mets that have made it 10 years? I’m so sad and depressed I can’t get out of bed. I know I need to live my life now, but all I think about is everything I’m going to miss, and how my kids will be without me.
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@bossmom24. I am so sorry you are here writing on these boards. This is not an easy diagnosis to digest for sure. Personally, I am only eight months into this journey so can't speak to anything beyond that. There are some women on here who have done quite well with liver mets. The medications I am taking were not easy to get used to, but they have done a fantastic job of wacking everything back (I have it elsewhere too).
I know exactly how you feel getting this diagnosis. I remember those first dark days. Since then, I have stayed on the positive side (getting the good news on a recent PET scan helps) but I also have some very bad days. The bad days are becoming fewer and fewer. The best thing for me was to get out of bed and carry on just like I had been doing. I continue to work and that has life saver for me. It kept/keeps me distracted from thinking about cancer 24/7. So get out of bed and take care of your babies and clean the house and do the laundry. Those babies need you now too. I know it's easier said than done but I hope you get there soon.
I am sending you hugs and strength to navigate these first few days.
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thank you. I have yet to find someone who is de novo with just liver Mets to see how they are doing. There is nothing in my bones or lungs, but my liver is covered in spots! I dont get it. I have IDC. It’s not supposed to spread this easily and this fast. I don’t know if these meds will work or anything about them. I want chemo, surgery, radiation, immunotherapy all the things, but all they are only offering hormone therapy basically. I feel they aren’t doing enough to help me.
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Bossmom- I hope I can give you some hope. I was diagnosed in 2017 with what we thought was Stage 2. I had a mastectomy, port placed, and started chemo. Then, 3 months later we found the liver tumors- - the largest the size of a baseball at 8cm- - and the bone mets on a CT for something not cancer related. I was then called Stage 4- - I call it de novo, as that tumor did not grow in the liver and bones that quick!!! It was there 3 months prior, but we did not do a CT for any reason. I was 47 years old and otherwise healthy.
Anyway, I am now going on 7 years as Stage 4. I am only on my 2nd line of therapy- - Ibrance/ Letrozole/ Lupron/ Xgeva first line, and now Lynparza/ Lupron/ Xgeva. My latest scans show stable.
I am sorry you are going thru this, so young and with small kids. But I wanted to tell you there is hope. Your plan of the liver biopsy to check for mutations (genomic testing) and to check the hormone receptor status, and your treatment plan of meds sounds spot on.
I hope this helped.
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Bossmom- I think we posted at the same time. I hope you saw my above post.
I too felt weird, is that the word, when they stopped my chemo (I had had 2 treatments before the Stage 4 diagnosis). I thought why are they stopping chemo? But, after reading and learning about Stage 4 I now know the hormone therapy and targeted therapy (Ibrance or Kisquali) is the normal standard of care. They shift gears and hold the chemo options until later. They want to treat the cancer, but more of a marathon versus a sprint. I hope that makes sense. And surgery after Stage 4 is found to not have any better survival ratings, as the cancer has already spread outside of the breast. The horse out of the barn thought. I repeat, your treatment plan sounds totally normal.
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Hi Bossmom ~
I agree with Candy - I'm no expert, but your treatment sounds right to me. I would suggest though maybe considering a second opinion to put your mind at ease. The initial diagnosis is such a gut punch, but you will get through it and once you get started on treatment, things get a little more 'normal' and you'll absorb it into your life. I had the best response to Kisqali, almost two years, and many women get a ton more time that that. Best of luck to you.
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