How are people with liver mets doing?
Comments
-
For the newbies or those who are scared, just keep in mind, you only need 10% of your liver to function. I have posted this stat before but wanted to post it again as it always makes me feel better when I am scared. One of my doctors told me this early on in my journey.
It is amazing how many new treatments come out each year. There are many promising therapies in the pipeline, including various immunotherapies and new mechanisms to deliver current drugs more effectively and in ways that combat previous resistance. I feel very hopeful and am just trying to make it through on the therapies out there now until the next one comes out.
Despite having a staggering proportion of my liver replaced by mets right now, my quality of life is amazing. I am working full time, plan to run 4 miles tonight and then eat dinner with my husband and little baby. Very little has changed day to day since my diagnosis, despite my recent liver mets progression (aka explosion. I am going to continue to "live big" until my body tells me otherwise. I feel great.
Please don't give up hope!
0 -
Welcome, Mattie. To me the important things are to go to the best cancer center you can, and to find an oncologist you like and trust.
Also set up the support you need. This can include an online group like this one, an in-person group, a therapist or social worker with oncology experience, kind and helpful friends, family, and neighbors, a house cleaner, a restorative yoga class, an exercise buddy. Be realistic in your expectations of yourself if you are tired, and be kind to yourself.
For the visit with the onc, have your list of questions written down, and consider taking someone with you to help process the information. Ask how to contact the onc if you think of a question after the visit.
0 -
welcome Mattie,
I am about 2 weeks ahead of you. I had/have strong pain in my liver. Is that what got you started ?
I had been preparing mentally & emotionally since I had my lumpectomy, that stage 4 was in my near future. They were looking for mets then. My nodes were matted, burst open, Cancer growing on the outside. It's called extranodal extension.
My MO told me about the pathology, same as before. She talked about trying this chemo, decide after 2-3 treatments if we should continue. All my tests, ultrasound, CT scan, liver biopsy & blood are online. That makes it easier.
I wish I had asked more, but it's a wait & see nightmare.....
I read some of my texts, they ramble, hop around. I feel like I lost another chunk of IQ pts. The chemo the first go around took plenty...... So please excuse my poor writing
0 -
Thanks guys!
Shetland, excellent points! I've got most of my support team left from the first go, but it looks like this will be a marathon and not a sprint.
Holeinone, that was me exactly! Pain in my abdomen for 2 weeks, meeting with my excellent GP, ultrasound, X-rays, trip to ER with what I was sure was gall bladder attack.
Then CTs and a PET scan later and it looks like it is back. 😱
Last time it felt manageable because there were a set number of treatments. Now, I'm just trying to think of it as any other chronic condition like diabetes or high blood pressure. And I feel silly because my biggest worry SHOULD be survival, but I find myself thinking "Man, I really like having eyebrows and eyelashes again" "Chemo made food taste so bad last time. Does this mean I'll never really enjoy another meal again?"
And I feel like I failed my survival. And sentinel node was clean, darn it! How did those little boogers get all the way down to the liver.
And I hurt. I just want to wake up and this all be a horrible nightmare
0 -
JFL,You are my new hero! Thanks so much. I needed this
0 -
hi ladies, well my mom just had her first chemo today. Benadryl got her drowsy, I am hoping she will tolerate it better than taxotere.
It has brought back so much memories, having gone through treatments myself. I feel this fear, of all the side effects. Of course I can't share that with her. I want to focus on positive outcome, praying that the side effects won't be as bad.
0 -
Mary, Mattie and Holeinone
I very close friend of mine was told that he had 3-6 mos at most to live about 17+ years ago. (yes, it was a different kind of cancer but this story applies to any and all cancers) None of us have a crystal ball. We could get hit by a car tomorrow. But, being stage iv makes us way more aware of our mortality. So, live and enjoy your life. Try not to get bogged down with what's going on with you. Find what you love and make sure to do/enjoy it. For me, spending time with those I love is what brings me the most joy. To that end, I moved closer to my DD and visit my parents in Fla more often. I try to live my life as "normally" as I can. I'm working f/t and enjoying living in NYC now. Years ago, stage iv was a death sentence-it no longer is. Now, with all the therapies and treatments out there we can live our lives. Some txts will work and others won't. A good friend who's in ca research tells me that every year new treatments come out and because of this hopefully, I'll live long enough to get the txtment that will knock my mets to NED for a very long time.
Make sure you have a great support system. You'll find the women here a great source of support and information. There will be those who say stupid things to you- mainly out of fear (Mary K I think that's why your love said what he did) You need to educate them and to tell them how what they said makes you feel because the last thing anyone really wants to do is to hurt or to upset you.
You will have times when your mind goes to that "dark" place-it does with all of us. But, let it out and then get into your fight mode to deal with the next situation that comes up.
I wish your treatments bring you to to NED sooner rather than later!
Babs
0 -
Mattiefang-
I would want to know what the specific type of my new metastatic tumor was( they can change type some to Her2+ allowing for different treatment options)
If they found a met in my lymph and liver, I would have them check my brain as well. And if I hadn't had a full body CT to check my bones and lungs I would ask for that as well.
I would want to know what their first choice of treatment was. And then I would ask what the alternatives were. I would ask them why they chose the first line vs. the second line of treatment. I like to know my options and the reasons behind their recommendations
I would ask about the side effects of the proposed treatments and the best ways to deal with them
I would ask about any clinical trials that might be available for my treatment and if so what they entail.
I would ask about nutrition and dietary restrictions. And would ask about any supplementation that might be beneficial. Ask if they have a recommendation for a nutritionist.
I would ask if there were any restrictions while taking the treatment they recommended.
I would ask about how tired I will be while undergoing treatment and if I need to get help
those are the first things that come to mind. I am sure others will have some things to add to the list.
Good luck
0 -
So big bummer of a day for me. Went to get my Herceptin treatment today. Once I was there, I was told that I couldn't get one. My heart function was too low. I wasn't quite expecting that. The nurse found my oncologist to double check and the oncologist hadn't realized I was due for treatment today. She said that I had to skip this dose and get a repeat echo in 3 weeks. She is hopeful my heart will bounce back after missing only one dose. so it was no go for me today. bummer. Here is to hoping she is right
0 -
leftfootforward , I'm sure you will bounce right back.
0 -
Welcome to the newbies, sorry to meet you here, but this is a good group, I have found lots of support here.
JFL, thank you for that statistic, I really needed that!
Left, so sorry to hear this, I know you must be disappointed, but I bet missing one will get you right back to ready for next treatment!
love and hugs to all, Alissa
0 -
hi all!
I can't reply to all posts because if I do there wont be any place for others (lol). But I want to say Thank You to all my heroes..yes! You all are my heroes.
I was hurt so much but could not hate him though I feel I should have...some of you so rightfully commented that not all people around us can understand the physical and psychological battle we are fighting. I came to this site because i had no support nothing from my family because they are in a total denial that I have incurable cancer now. I have no history of any type of cancer in my family...that might be the reason they ate behaving like that. one of my friend is a survivor of BC but as soon as she heard about my diagnosis, she started crying like nuts saying "how God could do that to you?" and I had to crack some nonsense jokes to make her smile. Huh! Enough drama
the support I found here has literally saved me from dying mentally before physics death. ❤❤❤ praying you all achieve a never ending NED
mattie and holeinone! I never had pain or any other symptom from my liver mets but after two rounds of chemo and duh! My liver hurts like hell. How are you doing on chemo? Has your pain subsided or lessened?
0 -
leftfootforward!
I m sure your heart is as strong as your will to fight this disease..so it Will bounce back for sure. Hugs
0 -
Left,
I am sorry you did not get your herceptin today, but your heart is also important and it will bounce back if you skip one infusion. Mine did. Enjoy the break and get your heart healthy and going.
)0 -
left
I get your disappointment. I haven had my chemo for 4 weeks b/c of pneumonia. I understand why b/c don't want to cause another problem. But missing treatment scares me b/c I can just imagine cancer cells saying. ". Oh. Great. No chemo. "Let's go after Diana's liver. " ha. I'm sure it doesn't happen that fast but in my mind I hate delays like this. Boo.
Our heart and lungs need to work for us. Complications can take your life but once you get cleared you'll be back at it. It takes more then missing a treatment to bring us down. So hang in. 💪
0 -
MaryK87, I'm so sorry the folks closest to you in real life are having such a hard time giving you what you need right now. I hope they quickly find a way to support you. One thing that has been working for me is to just tell me peeps how i need them to respond. The other night I was feeling the need to just vent about how I felt and I really just needed my mom to validate my feelings and not try to be encouraging. So I told her and she was great about saying "Yes, this is rotten. I think I would feel the same way if it were me." instead of pointing out that there is quite a bit of hope. That is just what I needed at that time. But, she has had the benefit of walking this road with me before, so it may just take your folks some time.
And surgeon sweetie, deserved a "Really?" with the most massive side eye ever. However, as previously mentioned, fear makes people totally lose their filter sometimes.
Leftfoot, sending strong heart vibes your way. "2, 4, 6, 8! Who do we appreciate? Leftfoot heart! Leftfoot heart! Go Leftfoot heart! Pump that blood! Push those meds! Kick that cancer in the head!"
Coni, I can imagine that being back in the chemo room must bring back a lot of unpleasant memories. Sometimes, just the smell of rubbing alcohol is enough to make me wince. You are very brave and strong to walk this road with your mom. big hugs!
0 -
Leftfoot. I understand your disappointment but sometimes taking a pass is best for the total outcome!
Babs
0 -
It looks like we all get worried when we have to take extra time off. But we have to stay as healthy as we can. Mattie, great cheer for leftfoot!
Regarding what you said in an earlier post, Mattie, yes exactly, a marathon not a sprint. When the extensive liver mets were diagnosed and I needed taxol, my family and I went into dealing-with-a-crisis mode. It was after that chemo was over that it got really difficult to deal with emotionally, when it sank in that I would always be on some sort of treatment and had lost the future I thought I would have. With the help of my therapist and this group I got a handle on that. The difficult thing now is that hubby and I are both tired from the marathon, so neither of us can step in and take up the slack like we would do under normal circumstances. This is supposed to be called the new normal but it is the new weird. You did not fail anything; the treatment failed you. I really get that wth feeling. I was stage 1 grade 1, did everything recommended and all the other healthy things too, yet here I am. Everyone thought it must be my gallbladder. And yes, we want not just life, but quality of life, including having hair and enjoying food if possible. I look for whatever happiness or enjoyment is available to me, and grab it, and that is how I thumb my nose at cancer.
That's a good list, leftfoot.
0 -
To all newbies welcome, and i am sorry we meet here. I hope you all find comfort and support in our group who is a wonderful one filled with care , compassion and wonderful advice.
I just want to give you hope with good news of my own. Today i had my CT/PET scan results are still NED . i would have passed 1 year and 5 months of NED and pray and hope for more.
Keep in mind with this disease everything is possible, it is not easy but doable to have a good quality of life . Even when you are TNBC still NED is possible and i wish it for you all.
Leftfoot, very good questions and list
Mattiefang and Maryk , people react differently to cancer news , give them some time to assimilate the news and to learn how to deal and live with and become supportive. Sometimes you will have people around you act like there is nothing wrong with you and it will infuriate you and others will think this is the end and depress you. Speak your mind kindly, because they simply don't get it.
Wishing you all the best results and hopefully NED .
Loads of love to all of you
0 -
YES!!! Great news, Woody! Happy!
Wise words about people's reactions. I suspect they think we are either cured or dying, and don't understand that so many of us are simply living with cancer. Emphasis on the word "living".
0 -
Excellent news Woody! That does give me hope
0 -
Woody
Love the good news, thanks for sharing.
0 -
Woody-such great news- so happy to hear it!!!!!
Happy dance time!
Babs
0 -
Great News Woody!!!!!!!!!!!! Enjoy the day!
0 -
Woody, that is fantastic! Makes my heart happy! Enjoy a wonderful Spring beginning....WhoopWhoop! Thanks JFL, I never get tired of the good news for sure. And babs, I love your outlook. leftfoot, I know how disappointing that is and now more waiting. When I was taken of the Femara/Ibrance combo I had to wait almost 8 weeks to restart something and I was soooo nervous. But I guess I had residual in my system as my TM's continued down and my scans showed improvement anyway. So try not to get too worried. I think it will be a good thing like what happened with Woody. Diana, Just repeat your motto to your liver, "Not today cancer, nope."
0 -
Shetland, Mattiefang, oriole, holeinone, babs thank you all for your happy dance ! Hoping i will dance it very soon to each and everyone of you . ((HUGS)).
0 -
great news Woody. Happy dancing from down under too!
0 -
Woodylb......I am so happy to see your good news! Celebrating with you and for you!
judy
0 -
Thank you dear Isy I specially like the dance from down under lolll! It is special:) i hope you are doing well . Hugs.
0 -
Ya Woody!
0
