How are people with liver mets doing?
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hello,
Thank-you for the supportive responces the first & second time. I thought I would be on here 3 times a day, but the Taxatere is kicking me down, and I am dealing with telling friends family.
I have lots of ?, hopefully tomorrow I will feel up to being nosy, asking "what if"......
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I did ask, we live in Canada. They don't "believe" pet scan makes a big difference. The feeling we got was, well once is stage 4 there really isn't much left, but only treat it. Where is the hope? I mean yeah I know it's stage 4, but there have been miracles. She said people can live with it for a long time, but at the same time I got the feeling of well there is not much we can do.
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coni- Ive been stage for for over 3 years. I have seen people post of being stage for for over 10. don't give up hope. Take it one day at a time. There are lots of options (some with better SE than others) but you can live with stage 4 for a long time.
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leftfootforward, thank your for you words of encouragement. I want to ask. Is 1.4cm and 1.0 and 8mm big? The doctors seems calm, but everyone one else tells me that's big.
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No, that is not big. I had 2 liver mets that were 11 cm and 4 cm. it is almost 6 years later and I am doing well.0
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coni
My liver was full of small ones and one larger lesion 4.5 X 4.9. Five months of gemzar brought it down 50%. The thing is we will respond to one treatment and then maybe not another one. Or stuff will shrink then over time get bigger then with new treatment shrink again. I think that is the hard part. I don't get " too happy " on good news and I don't allow myself to be "devastated " on not good news. Stay stable and now things can change depending on response to Tx.
I'm 3 years and 8 months out. You can live with cancer for a long time. That's my plan for myself.
Best
Diana
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thank you Diana. This means so much to me and my family. I will let my mom know
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came to this discussion after a long time (yes to me, its a long time) with tears in my eyes and ache in my heart. a loved one of mine (yes, love of my life) who is a surgeon told me today that I should ENJOY my SHORT life because I don't have much time left and he has never seen any stage 4 who survived. OK, I mean I know I am going to die but hearing that from someone I love was a punch in stomach. I have been to TNBC boards as well but never find a woman in my situation.
what a bad day today. I was having stomach issues and a little bit liver pain and I was freaking out if its mets growing or chemo working. it made me bang my head against the wall. 3rd chemo on March 25..desperately need support and words from you ladies.
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I don't post on this thread Maryk, so first of all nice to "meet you". I've had liver mets for seven years. I was originally diagnosed stage 3 in 1996 and mets to bone in 2006...liver 2009 and many more since then. There IS lots of hope. I just had to jump in and say that's a helluva way for someone to show their love making a comment like that. Not for me to judge, but I certainly would disregard that comment. A surgeon, of all people, should know better. If you read the Stage IV boards thoroughly, you'll see there are many, many more who've been living with bone/liver mets for years.
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Also, your signature line is no way to live this soon after your diagnosis. I hope you don't believe it. For all anyone knows, you could go into remission for years. I'm really quite angry that a loved one said that to you. I can't even imagine what the motive could be, but it sucks.
How 'bout you change it to "I'm going to live so dying will have to wait". Just a friendly suggestion. Attitude plays a big part in this disease.
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thank you so much leggo for jumping in...I so desperately needed to see someone who has actually survived stage four and im counting the years you survived and smiling and wiping my tears
. THANKS indeed for your comforting words. he wanted to go for movie with me but I was not feeling well due to these darn stomach issues. plus I was thinking about my 3rd chemo coming march 25 and 5 days of constant pain after that. with a stage 4 diagnosis, every pain, every ache feels like cancer is progressing so ignoring that and enjoying life is really hard. but again Im glad I posted it here though I was thinking it is not the right place I should post something like that. don't know much about the site 0 -
Maryk, liver mets hurt, no doubt about it. Just also want to make you aware they hurt when they're healing too. I'd like to think that's the reason you're pain has increased....treatment killing off those cells. Could be, right? Go with that, until you find out differently. Hugs.
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MaryK, I hope he didn't say that because he was miffed that you weren't up to doing what he wanted you to do. Perhaps he meant well, but you shouldn't be pressured into feeling any particular way. You are newly diagnosed and going through the grief and trauma of that. Here is a thread you may want to read:
Tips for fighting the dark clouds
https://community.breastcancer.org/forum/8/topics/...
And leggo is right. The chemo working could cause pain.
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MaryK87- we are all here for you. my liver was full of mets and then medicine got me to NED. I had a single liver tumor resected in July. since then doing great. 3+ years and still around. I also had brain mets so a combination most people are afraid of. I just keep living life. Sorry that the treatment has you not feeling well. I might talk to your doctor about it, as there might be something they can do for you.
come here anytime for support
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Yes, yes. We are here for you, MaryK. I gave you a link to a helpful thread but I hope you didn't take it to mean you were in the wrong place here on the liver mets thread!
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MaryK,
I cannot believe someone who care about you is able to be so mean at a time when you need his support the most. I hope you do not let this comment get to you. You are newly diagnosed and this is overwhelming for you it is understandable. But you may to relate to him, that MANY ladies are living with a stage IV and many other have lived with it for years. I am stage IV since 2014. I had more than 15 tumors in my liver both lobes and multiple bone mets on most of my skeleton , i have been with no evidence of disease since a year and a half. Two treatments before failed and one worked. Also it is true that sometimes mets hurt but others like Shetland said they hurt when they are healing and the cells are dying , they hurt just as much. Think about it this way . Please, do not listen to anyone , learn to listen to your body and do not think that every pain is cancer just because you have cancer. Other things hurt too and treatments hurt also. Keep in mind there are some ladies who have been living with the disease for 25 years other for 15 and other and others. Positive thinking is part of the treatment and so is faith and belief in yourself unless you have a reason to believe otherwise do not be afraid.
I am really insulted by your friends words and it made me angry but I hope you rise above this and beat the disease , this way you make him swallow his words.
We are here for you anytime. Hugs
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Well said Diana , i always loved your spunk. Not today cancer
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Holeinone- sorry that you had to join us here and that so many of us missed your original post. You will find the women here a wonderful group-they are so very supportive and helpful!. Just hang in with us!
Babs
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"tell the loved one" to take a hike.. I was dx'd in Dec of 13 with stage 4. Not really that long but there was metastasis to bone and in the interim to the liver. not just a little bit either..The astonishing thing is that I am still going strong. I am going to my 10th session of IV taxol and IV her cep tin tomorrow. I travel and work and stay up to date on many things. I am not in denial but I would state that no one knows how long each person has to live. My life is currently full of joy; however, I know that time will change that level of wellness/. Who knows maybe there will be a treatment that pushes the old expectancies out further. Seek out hope and seek out the best you can make out of a reality that none of us volunteered for. Carolyn from Music City
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I was diagnosed with Stage IV, mets to liver and bones, given 11/2 to 3 years to live. That was over 9 years ago.
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Cnanthia- love to hear that!!!!! Hope you're here for many many more years!
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Holeinone, I do hope you feel better and my thoughts are with you as you navigate communicating to friend and family, one of the first and toughest things we must do. You take me back as I remember puzzling over that one. Please do ask away with your questions when the time is right. There is not nosy here.
MaryK, that comment is a wow! A big downer when hope is such a better choice. But I also think our loved ones go through their own kind of shock and don't always say the best things. My husband made a killer off color joke to me and b/c I love him dearly I won't repeat lest you think wrongly ill of him. I was hurt and livid but forgive him.
For me and I think for you too being trip/neg adds extra worry. I hear great stories of women living many years and I am glad to hear it but always checking for the three negs in their signature. I also, like you, try to find people in the most similar situation to compare myself to and for you and me trip/neg with extensive liver mets is a big part. My cancer also spread so quickly (just one year after stage 1a dx) that it adds to my fear. All this leads up to my telling you (and hopefully not scaring you) that I am okay and I am hopeful AND I did find a gal whose liver mets weren't as extensive and who is BRC1 pos. (unlike me) BUT she was 7 years out from her stage iv dx in November. I think of her a lot. We all respond differently and you have no reason to believe your response won't be fantastic.
Coni, I think those liver mets are small given I felt just swell with no idea of the cancer growing in my dear liver until I had two 10 cm tumors and too many others to count. Chemo is still doing its job to shrink, shrink, shrink...8 months later.
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maryK87- I'm sorry for that comment that was made to you; however no one knows when our time in this earth will end. Dont pay attention to comments like that. negative people like to make everyone else feels down, you cannot allow that. I know is hard, I'm also a survivor I was 31 and I remember my onc radiologist telling me I only had 50% of 5 year survivor, I remember going home and crying. I told my onc, he was so sweet and told me not to pay attention to that, I need to concentrate on being healthy, on doing everything I can, because I was not a number. That gave me hope. So, seeing all this wonderful women fighting and being here for years, you will be just the same. Faith moves mountains!! you will be in prayers, you stay with a positive attitude, and stay away from all the negative. Everyone's life is too short to pay attention to people like that. If he was trying to make you feel guilty or if he wanted to movitivate you to go out, that was the wrong approach SPECIALLY coming from a surgeon. He, must have though that coming from him, you would believe it. Show him wrong!
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Maryk,
I've been stage IV for almot 7 years now. I was stable for 5 and last year got a pituitary tumor & lots of liver mets. Had to go back to chemo. Originally, I was given upto 2 years.
Best wishes on your treatment.
Terri
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Mary, I concur with all these women. I am only 8 months out with liver mets but my treatment right now is working. I have shown small steady improvement after 2 1/2 months on it. And yes, like leggo said, I still get twinges and little stabbing sensations in my ribs. Dying tumors sounds very logical to me! There are women on here who have are in a way worse situation right now than me that are doing well. I find a lot of hope in that. After reading kaayborg's post maybe you should tell your Love of Life how crushed you were by that and if he cannot support you in a positive way to keep it to himself. (and direct him to this site) kaayborg also had a point about your triple neg adding extra worry, but we ARE all unique in our response to treatment. I too feel extra worry because of ILC so hunt for other Dx lines with the same for encouragement. Woody and Shetland, the small issue my Onc mentioned is inflammation of my thyroid, possibly Hashimoto's thyroiditis. Otherwise the news was good, a lot of decreased SUV uptake. Thanks ibc, leftfoot and cnanthia for the good news! Diana, sounds like you are feeling better?
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Nice to have all of your support.
I learned in the last page, liver mets hurt, growing & shrinking. Whew, I already was hoping I was hypochondriac. That seemed much more appealing.I am in a fair amount of pain & I am taking OxyContin. Hate pain meds, but I need them now.
For those that were dx straight out the gate, Sorry.
I am on Taxatere, by itself, every 21 days. Not real thrilled with week 1. Hair loss ?
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Holeinone and MaryK, you are at the start of a massive learning journey. In a few weeks you will know almost as much as your docs about stage four. When I was first diagnosed I was all over the Internet trying to learn as much as I could and only ended up confused, overwhelmed and in despair at some of the (very out of date) statistics. However your best advocates are the ones on here that are going through it and that you can relate to you. I'm sure like me you will learn so much and feel energised at the positive stories and support you'll get. It's. It's not easy but I promise you it will get better over the next few weeks and months. Life goes on just in a different direction. All the best to you,
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Hi ladies, just wanted to pop in and check on everyone. Mary, I was so mad reading what was said to you. But I think everyone reacts to this dx differently. I don't know about you ladies, but I have seen an interesting shift in my support group. My sister has been my best friend for years, ,my cheerleader during IVF treatments and by my side through babies, but recently, no where to be seen, hard to get a hold of, as is my dad. My mom says they just can't deal, don't know what to say or how to react. Then I have had casual friends step forth and be my biggest support. The hubby is in total denial, won't even discuss the what if's. I would talk to your loved one and explain the hurtful comment and be honest with how it made you feel, if he loves you, he won't want to be the person causing you pain. But be clear, mean comments are unacceptable! Holeinone, welcome and sorry to meet like this lol. I am only 7 months in from dx, so I don't have much to offer but that things have a way of making themselves feel like a new normal and things seem to calm down a bit, for longer periods of time. Love and hugs to all you ladies!!
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Hi Mary K.,
Your loved one is scared and has limited life experience of what's possible with mets. He's projected that on you (you're going to die on him) and infected you with his fear. Only love can overcome fear. Sometimes there's a long distance between the two, sometimes they are close enough to touch.
Mary, I hope you'll take strength from our stories (I've been living with liver mets for over 2 years, pleural mets for 8, lung for over 16 and regional for 25).
May we strengthen you, so you can respond with love to the love of your life! May you return from fear to love together!
Mary, I'm reminded of this great article...maybe it could encourage him to be more conscious of what he says and its negative impact on your ability to survive and thrive).
How not to say the wrong thing: It works in all kinds of crises -- medical, legal, even existential. It's the 'Ring Theory' of kvetching. The first rule is comfort in, dump out.
Nobody knows for certain how long anyone has to live or how well they'll do with any life challenge. For him to give you a death sentence is as uncertain as for us to tell you that you'll live a long, long time.
Living with uncertainty may be among life's greatest challenges - and cancer certainly multiplies uncertainty.
>came to this discussion after a long time (yes to me, its a long time) with tears in my eyes and ache in my heart. a loved one of mine (yes, love of my life) who is a surgeon told me today that I should ENJOY my SHORT life because I don't have much time left and he has never seen any stage 4 who survived. OK, I mean I know I am going to die but hearing that from someone I love was a punch in stomach. I have been to TNBC boards as well but never find a woman in my situation.<
warmest healing wishes, Stephanie
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*waves* Hi there. I'm new here.
I'm still trying to figure out the signature goodies, but I'm triple negative with what looks to be mets to my liver. Just biopsied the one hot spot lymph node bunch they could reach under my left collarbone this morning. I'm glad it was there, because the other stuff is in the middle of my liver and they didn't seem too excited to try and sample that.
I have lots of questions, but mostly I just like seeing that you guys are hanging in and fighting. I'm young (for breast cancer
) and I'm a single parent to a lovely 12 year old daughter I fully intend to see grow up.My first question is: if you were just starting at the beginning of the journey, what are the most important things to know?
I meet with my MO Thursday and I want to be prepared!
Thanks!
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