How are people with liver mets doing?
Comments
-
Artist and Sonya,
I feel the same way. My kids are 9 and 12 and I really want to see the off to college. Grand babies seem like a microscopic possibility to me. Also, I've been married to the love of my life fo 15 years in June and I really want to be those two old folks sitting in rocking chairs on the front porch, holding hands.
As for God's plan... I know he has a plan for me life. It may not be what I want (is it ever?), but He see's the big picture and I am going to play my part. I really feel like I am here so my children will do something spectacular with their lives.
Just my two cents. I am hoping for miracles, too. For all of us.
•Erica•
0 -
Hi Woody,
Email and forums are so difficult for conveying both information and support.
Tone is lost and it's sometimes close to impossible to tell how we come across to others or their reactions to us.
I'm guessing from your response, but don't know, that you took my reply personally?
And that I came across as a know-it-all by spouting informational math and science?
That from your perspective you feel criticized because I interrupted and corrected your conversation?
See, there's so much I don't know about how my reply affected you.
I do know that I feel saddened about possibly hurting your feelings and want to apologize.
To offer, I've participated in health online support groups for many years, have done much medical, mathematic and scientific research to understand how "they, the medical folks" think, so I can find the best possible medical and holistic care for myself and those I love. Accuracy and medical factuality are very important to me. And I really, really try not to offer medical advice or engage in medical fortune telling.
One of my personal "hot buttons" is inaccurate medical information being shared online that may lead to improper care or choices.
bco members have an amazingly high level of informational understanding along with supportive caring for one another. And even when members are having a written conversation between themselves, dozens more are reading and taking it in. I've grown to appreciate everyone I've met here, whether we're similar or different.
Striking the balance between factual information and conversational support is difficult.
Woody, I want to apologize for anything I said that pushed your "hot button". Please forgive me. I want to continue our conversations and connections.
I hold only good intentions in my heart.
and offer warmest healing wishes for all, Stephanie
0 -
Stephanie,
Thank you for your post. No i am not offended and hurt in anyway. I am also very careful in not posting things which may effect the path people will choose for their care.
All your posts are appreciated, welcome ,very informative and supportive. You are kind, gentle and helpful.So no offense and none taken.
Love and comfort always.
0 -
Thank you, dear Woody.
Your message has lifted a burden from my heart.
I so treasure you and everyone here and want to offer only support, not dis-ease.
warm healing wishes for all, Stephanie
0 -
Sonya, Artist, Erica ~ Geez, your posts tugged big at my heart and you can count me in on feeling just the same...those thoughts that keep circling back around and the tears that well up along with them. Then, you push it all back, get out of the car or walk out of the bathroom and just keep moving. I've taken a few times when no one was around to let them loose well and good, but am also surprised that that's over pretty quickly. It's more a quiet drip, than a waterfall...which is strange to me because I've cried rivers over lesser challenges for sure. I like to be honest and I don't feel like I'm faking around other people so much as I am deliberate with my thoughts because, for the love of Pete, I can't walk around all the time thinking about this and getting all drippy. I also still kind of feel like the reality of the whole thing has still yet to fully hit me. Grandchildren...another stage iv gal I know locally just had her first grandbaby. I expressed my lack of hope for this. She said, "Don't give up on grandkids. Just don't." She and I both know there is plenty of reason to think that impossible but I'll accept her "just don't" and try my best to go with it. A little less of stretch, but still a mighty one, I hope to see all three of my girls graduate from high school. Most times, that is my goal, which is so pathetic given I, too, planned on shuffling through to the end with my old fart. One of my shared waterfall moments came in bed when I noted wrinkles at the corner of my DH's eyes...because that caused this thought to pop, "I was supposed to see you older than this, so, much, much older than this."
As for God, I was born and raised as a big time believer but my faith has turned out to be more of something I've chosen in the midst of doubt. Some know for sure that heaven awaits us, that God is with us and looking out for us. I don't know for sure but choose to believe it and feel my life is better for it. I can't accept that cancer is God's plan for anyone's life but tend to think of it as part of this imperfect world, something sad and dark but from which God will wring as much good as he can. It's that goodness which I can feel for certain that keeps my faith alive. I was reading to my girls tonight, the Tale of Despereaux. Kate DiCamillo wrote, "And hope is like love...a ridiculous, wonderful, powerful thing." That speaks volumes, doesn't it?
0 -
Oh kaayborg, I like that quote a lot, it does speak volumes! I too was raised with a lot of religious background but somewhere along the way grew a little cynical. I know there is some force greater than all of us, I'm just not sure what...I am trying to do things that will help bring some faith back into my consciousness. I just can't "make" myself believe. A few people have been trying to encourage me to quit working but I feel it helps keep my mind occupied and the tearful times in check. And I try and remind myself that at least my kids are grown and on their own, I m grateful for that!
0 -
Hi ladies, just wanted to drop in and see how everyone was. I just had my PET scan and am now impatiently waiting for the results. I have been on Ibrance for 6 full cycles now. Last PET I had gone from 12 spots in my liver down to 3!! I had to have my gallbladder out 2 months ago, and one of the spots had started spreading from liver to gallbladder, so the surgeon cut it out. I was relieved to here another one down. My tumor markers went down, but by only a point this month. The ups and downs of this new world are sure hard. Like you ladies above, I have young children I want so much to be here for. My kids are 6, 4,4, and my baby will be 3 next week. My daughter lost her first tooth this week, it was strangely very emotional for me. I think for the most part, I live in daily denial. I feel good, still working, raising 4 kids, with twins and kids so close together I have been really tired for years, so used to fatigue. But then one of my babies hits a milestone, and it really throws me. They are too little to really understand what is going on, so I try really hard to make our days as normal as possible, which in turn helps me I think. Hopefully get scan results today or tomorrow. Wishing all of you ladies a beautiful day!!
Alissa
0 -
Alissa good to hear from you. I know the anxiety of waiting for PET results is unpleasant to say the least. But i hope you will get stable and good results. I hope you are feeling better after your gullbladder removal. As long as your tumor markers are down , even if by one is good as long as it is not going up.
You are not in denial , it is the love for your children which drives and makes you deal with your disease as normally as possible. Moms are tough when it comes to protecting their children , they are resilient even when they get sick. It is very heartbreaking specially when your children are so young.
I wish you clear results and pray you will be around for each and every milestone your children hit. Keep us informed. Hugs.
0 -
Alissa, I hope you receive good scan results. I know what you mean about living in denial. I am the same way. I continue to barrel through everything as usual. Sometimes, I question what I am doing and then realize I prefer to live like I am for now rather than "checking out" of life. There may be a day I need to slow down but not yet.
0 -
Hello ladies,
I was dx with innumerable liver mets 2 weeks ago. Also a spot on the hilar node & trachea. So, I have been reading this thread, bits at a time.
Kaayborg, enjoyed the quote, I will need to reread it, twice a day.
I got an infusion of Taxatere yesterday. Low dose, see how I do. Feeling weak, but know it could be much worse. Will get a Neulasta shot in a few hours. Ugh......
0 -
Holeinone,
I am sorry you find yourself on this thread. I remember you few years back on a different thread and i am really sorry for your liver mets. Taxotere is an effective drug and i hope you respond very well to it. I hope you find here the support and the help you need. The ladies are wonderful and extremely supportive. Wishing you a good response and healing lights.
0 -
I don't even know what to write and I'm having trouble seeing through my tears. I have been NEAD but I think something is going on. I have been feeling slight pain in the right liver area, and increased reflux which was a symptom I had before I was diagnosed. I just read my March PET-CT report and it shows an area of "mildly increased activity" and a corresponding lesion which "has increased slightly in size" in the right lobe. Along with this my CA 27-29, while in "normal range" is double what is normal for me. My onc agrees it is "worrisome" but not enough to change treatment. So they won't give me an appointment for next week, but expect me to wait until next month. And I'm the one who had to say, hey did you actually read the report, after she said things were unchanged. I wonder if I should be looking into interventions for the liver or getting a second opinion. I am at a well-respected cancer center. I'm kind of freaked out right now.
I just feel like this is the beginning of the end. After a complete response to taxol, I really thought letrozole would hold me for a long time. I'm on Ibrance, too, and I expected at least the 20 months average from it. But now after about one year on it, if the cancer is already back, I think I'm really in trouble. That I won't be one of those who lives five or ten years. That has been my hope until now. I just booked a long-overdue vacation for me and my husband, and my dance classes (both teaching and taking) are going so well and I'm enjoying them so much because I have been healthy and not disabled by cancer or treatment. Now it will all be snatched from me. My kid has so many things coming up, has good things happening and also has struggles and needs a mom. My poor husband. My poor parents.
0 -
Oh Shetland, my heart breaks for the pain I can hear in your writing. I am so sorry. But the fact that your onc is not concerned might be a good thing, plus the word "mild". I have heard that little movements up or down happen all of the time. I see my onc and like her, but am in the process of seeking 2nd opinions for a liver specialists, so I know somewhat how you might be feeling. As my mom tells me, sit down, have a good cry, let it out, then put on your game face for battle. A silly thing to say, but for some reason it works. Just know I am thinking of you and sending big hugs.
ALissa
0 -
Shetland,
I am so sorry and i can feel your anguish and panic. I feel with you very much as my symptoms before diagnosis were the same as yours. I also like you have been NED for a year and five months. But lately like you , i have a little pain on the right side, reflux and indigestion. I , like you feel that something is going on. My last PET/CT showed fatty changes in the liver but no activity , lesions on bones but also with no activity.
When i told my onc about the right side pain , she ordered an xray. It showed nothing. What i want to tell you is that there may be mild changes and your markers have doubled but still in the normal range, even if not for your usual normal. This does not mean your treatment will not work whether your onc waits one month before changing or not. I know talking is easier than doing. But like Alissa said , have a good cry and then sit and think. Do not make rash decisions out of panic. If you trust your onc , then you wait this month. If you do not feel comfortable with her decision then look for a new one. From what i know liver mets are not resectable except in rare cases . If you have only one lesion you maybe be candidate , you can always check it out.
Please do not think it is the beginning of the end even if there is a mild activity. There are options and resection may be one of them. Your symptoms maybe be something else. If God forbids it is a progression , then you prepare yourself for a fight, don't let cancer beat you and most importantly don't let it ruin what you have with your family and your life.
My prayers are with you and i hope you soon get to put your mind at ease. I will be thinking of you , please keep us informed. Hugs
0 -
I hope that someone on this thread could help shed some light. This past week has been full of appointments and TONS of scans. I've been having right rib pain and pain under my ribcage. My stomach bloats like crazy after I eat anything and I am extremely nauseous. I've lost two pounds in the last week. My CT and sono show what is believed to be 3 liver cysts and 1 hemangioma. All three cysts are over 1.5cm and the hemangioma is 1.7cm. I had X-rays of the ribs and that came back fine. They are scheduling me a PET scan. I can not have a MRI due to my expanders. Anyone with liver mets have anything like this happen? I'm trying to decide if I need to get a second opinion. The pain is insane.
0 -
Mama2twinsplus2 and Woody. Thank you. Your kind words are helping me feel a little better. Yes, panic is a word that describes some of what I feel right now. You're right, I need to have my cry and then carry on. I need to enjoy today and do the things I need to do. But I keep crying again. I'm having trouble focusing on getting anything done. It's like I was too happy lately, so let's knock her down again. I feel like this is partly my fault for exercising less, eating more sweets, staying up too late. In other words, for living like a normal person. And for stressful things that I just recently got fixed. I think it's back and my onc needs to listen to me.
My onc is out of town, but says she will call me tomorrow. I really want to meet in person, with my husband there to help think things through. In the past my onc said we might consult her liver guy if something popped up, and I want to get that ball rolling. I want to talk about Aromasin/Afinitor (which she said several months ago would be next if there was progression) vs. some chemo or a clinical trial. I want to know if there is a treatment that will not prevent me from dancing or cause the kind of depression I had during my six-week trial of Aromasin before I started letrozole + Ibrance.
Woody, I'm sorry you are worried, too. It is a terrible, nagging thing. It's good your PET showed no activity. Stotamom, the PET scan sounds like the right next step. It should help clarify things.
0 -
Hi Ladies
Regarding ports. Does anyone have the problem that the nurse cannot get a blood draw from my port. It works fine for getting the chemo but they can't get any blood out of it.
Any ideas
Thanks Rosieo
0 -
Shetland,
You are not the reason it is back (if it is back). I smoke, stay up most of the night . No one is ever the reason why this stupid disease keeps popping all over us. So please d not add guilt to the stress of alleged progression. It is good that you will be able to talk with your onc soon and maybe convince her to see you. Here i can see mine whenever i want, it is not restricted and frankly , i think she should see you and listen to what you have to say and also check on your new symptoms.
A/A is a good option if prigression is confirmed and her liver guy is also another one. Aromasin was not good for me in controlling the disease and the SEs were terrible. Have you taken faslodex? Since you responded very well to taxol another chemo maybe a good option , like abraxane. I hope you are able to talk about all this with your doctor.
Thank you for your kind words , my symptoms are very mild , i will not be pessimistic lolll until i have my scan then we will see. If i have a progression, then another i will require another liver biopsy to make sure i am still her2+ because i am sure they would suggest kadcyla( tdm1). But cancer mutates. I will know next week.
Meanwhile, i hope you soon find the answers you seek and feel better and get back on track. Be kind to yourself.
0 -
Heleinone...inumerable mets here, too, along with two doozies (were 10cm, now 3-4ish). May your new treatment kick 'em down to nothing! Does your center offer the On Body Injector (OBI) for Neulasta? It's new I believe and I love it, though it sounds kind of weird. They put it on you at infusion (I do my belly), then it goes off 27 hours later and administers meds.
Shetland, ughhhhhh. I'd feel the same as you, that my fears were legit and symptoms were worrisome. In your shoes, I'd be doing the same and getting in sooner than a month. And, I know my onc would oblige me even if she didn't feel it actually necessary. She has said this many times..."I don't want to cause you anxiety so if scanning sooner is helpful, I don't mind at all ordering them, but I think it's okay to wait." Sometimes I have waited and other times not.
Also, I will add that my onc told me that she would not change my treatment right away even if there were some progression. We might tighten the scan schedule but the ultimate goal is to stay on current treatment as long as possible. I do highly respect her opinion on matters. I, too, am at a great cancer center but gained further confidence in my doctor when my local stage IV friend flew to MDAnderson and was told by doctors there that her onc (mine as well) was as good as they get and she should stay home and feel confident there is no better treatment found anywhere else. Still, I'd want to know the plan,
And, I'm in complete agreement with Woodylb, this is not your doing. Cancer just does this. Exercise and diet and rest and zen behavior, I think they'll help us feel best but they're not going to stop this. Make sure you get the very best care from your onc. You deserve it. I'm rooting for you and praying for you. Keep us posted, open the floodgates of your worry, then reign it back in. Did you see Bridge of Spies? I'm always thinking of the guy on trial, how Tom Hank's character said to him, "You don't seem worried." And he would reply, "Would it help?" I love that guy. Wish I could be more like him...but not a spy.
0 -
Shetland, I am feeling for you too. Feeling new pains is so scary and makes me panic too. My mind can go into a spiral pretty quickly. Just remember a few things. First, it may not be progression at all and I pray it is not. Also worrying yourself sick does not help in any way. Stress makes my stomach hurt, crying makes my head hurt, and ruminating just makes everything worse. God forbid, if it is slight progression, there are many women who have had major progression and still found Tx that kicked those mets butt and got them back to a manageable state. I hope you do trust your Onc but also remember that especially at a major center all of the Onc's get together for regular "Tumor Board" meetings that include conferring with experts from all over. Like Woody says, don't let the unknown ruin your days now and don't let cancer beat you! I just know there is still plenty of life left for you, progression or not. And please never ever blame yourself! I have a friend who eats like a pig, drinks like a fish and smokes like a chimney and is healthy as hell. ( As far as we know anyway) Go figure. I am sorry Woody that you are worrying too. I hope the next scan shows only improvement for you. Welcome Mama, I'm sorry you have to be here, especially with little ones. I can only imagine how hard this is for you too. Also welcome holeinone. JFL, I too live in denial a lot of the time as a coping mechanism, but my scans are Thursday so reality is rushing in right now. May we all experience some Spring renewal very soon!
0 -
Woody, kaayborg, artistatheart. Thank you so much for being here for me. Thanks for the validation and for telling me it's not my fault. I will probably insist on a March appointment. Should I tell her how it shakes my confidence in her that I had to point out the worrisome part of the PET report and the doubling of my supposedly normal TMs? She is very caring and experienced, but why wasn't she paying attention? If there ever was a time I needed to see her this is it. I think she doesn't think I need an appointment because she is not ready to change treatments, but from my point of view there is a lot to talk about and some things to set in motion now rather than next month. I'm going to ask if tumor board weighs in on progressions. I don't understand your onc's reasoning, kaay; why not switch treatment right away, before it gets worse and goes more places? Is it so you don't go through the chemos too quickly? In my case, I want my NEAD back if there is just one spot in the liver. I haven't seen the movie but I like that line. Yes, letting this ruin my days will do no good. I had a private lesson tonight and I started to cry, but I breathed and got hold of myself. The teacher asked if I wanted to leave, but I said no, this isn't going to stop me.
0 -
Shetland, I would tell your onc that you are feeling extremely anxious and that it would help a lot to see her earlier. I wouldn't share your shaken confidence in her. Though, I'd hope it not be the case, sometimes this sets people on the defensive and they're less inclined to want to help. Good question about my onc's reasoning...my assumption was to buy time on an effective drug before putting it in the "done" basket. Progression noted might be just a slow progression b/c it is still being kept in check by the chemo (so it is still working in a way) and I could gain many more months on it under careful watch to ensure it stays nice and slow or stable. As for going more places, I'm under the impression that something could show up anywhere and anytime and not necessarily have come from liver progression. I'm not sure that liver progression makes it more likely to have it show up somewhere else or not. All good questions to ask. And, I think it's always possible that her decision not to change at first sign of progression has something to do with the specifics of my situation. Who knows? You should see the movie. I don't usually go for "spy" movies so much but love Tom so I saw with my husband. I loved it..great theme of human capacity to extend love for all. Thinking I want to watch it again.
0 -
Shetland, I am glad to hear you feel a little better, and totally understand all of what you are feeling, I would feel the same. I called my onc office 3 seperate times to get my pet results. I had the report in hand, I just wanted someone to read through it with me and help me understand the things that confused me. They finally had the PA call me, probably so I wouldn't call again! The results are stable, no new areas of disease and liver mets stable, so very relieved! Sometimes we have to push for what we want, but if it clears things up and you feel better, its worth it! Hugs to all you ladies!
ALissa
0 -
Alissa such great news!!! Do the happy dance!!!
Bab
0 -
hugs and love to all courageous ladies...your posts are full of information, support and hope. woodylb, your posts are always full of love and hope THANK YOU indeed for being here for us newbies. kaayborg! I have multiple liver mets like you. are they gone now? or stable? how long it's been?
0 -
Congratulations Alissa! such a wonderful news. praying NED for all.
0 -
Alissa , Hourray! Happy dance for you !
0 -
I never came back and updated after my Y90 procedure. I had 2 liver tumors before the procedure and now I just have one. The one that is still there has shrunk a little bit. I am still doing treatments of herceptin and perjeta every 3 weeks. I also started on faslodex about 6 weeks ago. I am feeling stronger and better each day. I have not been posting but I am keeping up with all you wonderful ladies. Welcome to all the new ladies. There is so much to learn on this thread and so many people who can share so much knowledge.
0 -
MaryK - I am on my 11th cycle of gem/carbo (began in Aug.) Mets still innumerable but my two largest tumors are still shrinking. Began at about 10 cm each and down to 3-4 cm each. Hoping my dose reductions and longer recovery times needed for platelets don't affect progress. Also, having
Artist - Thinking of you and your scans tomorrow. Hope you get good results fast!
0 -
Hello, Everyone. My onc called today as promised. She had talked to the radiologist, and called the current scan evidence "soft" and "subtle". It could be inflammation. There are actually two areas of concern in the liver, one on the right lobe and one on the left lobe. She says a 25% change would be a usual amount to call it progression. On the other hand, she emphasized that she does not discount my gut feeling, and agrees that combined with higher TMs and my physical symptoms (some pain, reflux, bloating) it is worrisome. The plan is to see me and check my TMs again in two weeks. She doesn't want to set aside a treatment too soon. But if a change is needed, I will switch to faslodex. She wants to use that instead of another aromatase inhibitor so it will be a different kind of hormonal therapy than the one that just failed. When I asked about chemo, she emphasized quality of life and indicated that with a slow, small progression hormonal therapy would be appropriate. She said that if I need to see the liver specialist, he will see me within a week, with no long wait for an appointment.
She spoke with confidence born of experience, took my concerns seriously, answered my questions, and recommended that I see her in just two weeks. I do trust her as a doctor and like her as a person. I will attribute the glitch to her being out of town.
I'll be so disappointed if I only got a year out of letrozole + Ibrance. But what can I do except carry on and get the most out of each day? It's going to be hard, though, because I have lost some hope. But not all. I feel better having talked to my onc and knowing what the plan is. You guys have been a lifeline to me.
0
