How are people with liver mets doing?
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Prayers & good luck to Woody & Chichi with their scans!
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Woody, Chichi, SyrMom, praying for clean scans!!!! Chichi...glad your dr is proactive in getting you the meds you need before the hospital is needed!
Spring...think of you when I take long walks...I envision myself springing above ground, like you! I'm sorry you've had rough times, but you're reading your body & you will do what you need to do to feel better!
Penny...I can't believe it was a poopy problem!!! And being miserable in Disneyland just makes me sad. I hope tomorrow's appt has a plan for a new or different treatment. I know there is always, always hope...God has you in His hands...that is why hope is alive.
Love to all...Happy Mother's Day...every day!!!!
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Hello All - Prayers to all who are getting scans this week - I swear I'm getting scanxiety for you. I really hope everyone has great, or at least 'doable' results! Penny, so glad your digestive problem was solved. I had the same thing over the winter and when I finally listened to my Onc and took something every morning/evening faithfully, I'm a new person. I even lost a few pounds, lol! Wishing everyone a good week, I get Halavan tomorrow after a reduced dose for a few weeks - my liver is telling me that it is time to get back on the normal dose
Laura
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At UPenn. Waiting for ultrasound. May have to be admitted. Not sure where blockage is. Will keep you posted.
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hi . I live in uk and was diagnosed with liver mets just over a week ago. I had low volume bone mets for a year that responded to hormone therapy then my liver tests in blood went haywire and got ultrasound which showed mets. Waiting on ct to see how extensive they are. Been feeling sick as well. On anti nausea meds. Been in hiding about a week. Can't stop crying and thinking about my death. I am 40 and mum to a 5 year old. I just can't believe this is happening. I am lobular x
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Sorry for this news, Torridon, but glad you found us! I already posted on your thread, but we know your fear, to have a vital organ involved is terrifying. Hopefully you'll have a biopsy soon (make sure that happens!) & smart oncs will determine the best tx for you. When I logged on after my liver mets dx, the first post I saw was Denny...celebrating 10 yrs w/liver mets. We all know everyone's dx & body is different...but hope goes a long way to being able to truly live with this disease...I'm sure you've had the hope thing going w/bone mets...and a precious 5 year old...who needs Mum! As you get more info & understand your course of tx, I hope the tears lessen & hope takes over!
Thinking of our scan gals today...in my prayers!!!!
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Laura..hoping Halaven is kind tomorrow! What do you mean that your liver is telling you to get back to the normal dose? Are you having pain? Hope not!
Oh Penny...thinking, praying, hoping they find the blockage....not what they thought???? Ugh.
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Hello ladies,
Penny, i hope the find out soon what is going on with you and treat you for it. My thoughts and orayers are with you.
Diana50 i hope your doctor gives you many options , there are always options and i hope you get the right one.
Chichi my friend i am waiting for your results with impatience and great hope you will get excellent results.
Syrmom, i cannot wait for your scan either , prayers prayers prayers.
Spring , i am glad you are getting better and pray you continue to do so .
I just wanted to give all of you some ray of sunshine and share with you my news, i got the unofficial results from my doc today over the phone. My PET is clear of any cancer activity and tumors , still on complete response till now . I do have a very low activity insignificant to be considred cancer, my onc thinks it could be from my COPD i am a heavy smoker and i am still taking inhalers since one months following a bronchites , so it may have been picked up by the scan as a hot spot. She will read it with me tomorrow while i am getting my taxol. I still have one taxol next week , it will be my last god's willing. But will continue herceptin/perjeta + an AI to be decided later.
I want to thank all of you for your kind wishes, it kept me going and your infnite support at all times and i pray and wish for each and everyone of you good scans , healthy results, and healing treatments. Where there is hope there is always a way .
You are all wonderful , loving and caring and deserve all that is good and beautiful . Lots of love and prayers to all of you for good responses, no progressions , stability and serenity. Love you all . ((HUGS)).
If i forgot anyone please forgive me the last few days i missed some posts. May the alord bless us all .
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Torridon,
I am sorry you have joined our club, like Ronniekay i am glad you came here where you will feel welcomed and loved.
I understand your fear specially when vital organs are involved, specially when you have one little girl who meeds her mom . But remember you are so young , and treatment options are available and are efficient in prolonging lives and sometimes remissions. Like RonnieKay said, many ladies in stage IV have doing ok and well for years. i am sure that once you overcome the shock , your love for your little girl will help find a way of coping, fighting and surviving.
Once the biopsy is done you doctors will be able to choose the right med for you. Have hope , i am also lobular and it has been a year since my liver and bone mets. I am still here and so are others.
Inoray you soon get a clearer picture which will ease your mind, heal your body and lift you up.
Keep us posted
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Penny, I hope they find out where the blockage is very quickly and they can offer you a simple solution. Thinking of you.
Syrmom and chichi, good luck with your scans this week. My scans used to be around the same time as yours but I am now 5 weeks delayed due to the time off for my surgery.
Benjnate, Glad you checked in. I've been wondering how you were doing. I have the same question as Ronniekay. What do you mean about needing to get back on the full dose of Halaven. Are you in pain? Or, are you blood tests showing elevated liver enzymes?
Woody, Congratulations your clear PET scan. Time for a celebration. Good news, too, that you will be finishing taxol soon and continuing with the hormonals and herceptin/perjeta. A lot of treatment still but gentler than the chemo, I hope.
Torridon, Finding out that you have visceral mets can be devastating. But there is always hope. Some of the ladies here have been living with liver mets for years and I hope that you will be amongst them. Get your mets biopsied if your oncologist hasn't done this yet. Mets can change their profile, especially liver mets. Good luck with your CT results.
Ronniekay, I am hoping to go for a long walk one day soon. I am still building up the strength in my leg. I had physio today and they have cleared me to go onto one crutch rather than two. I have been sneekily doing that around the house, against doctor's orders. Having taken 3.5 hours to replace my femoral rod, my surgeon has wanted me to be ultra cautious and not go to full weight bearing too quickly.
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Spring,
U should listen to your doctor and rest your leg for a while before bearing the full weight , he is right. Still i am happy you are able to move and i hope soon you can scan also and get good results so we can celebrate together.
You are right herceptin / perjeta and anti hormonal are still a lot of meds , but i am lucky i have this option. If it keeps the cancer at bay then i am very grateful and humbled that i am alive . I tha o god each and every minute specially for this wonderful community here. I hope you post good news soon. Wishing you a speedy recovery.
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Sending best wishes for peeps having scans and for Penny to get answers and feel better. Like I said I feel a little lost not knowing you all. Your posts are helpful.
Met with onc re: biopsy. She ordered Fish test for Her2 status. Apparently they don't always do Fish on initial biopsy sample. I hope Fish shows + in Her2. Still ER + which didn't help me much on dx of mets in 2012.
My onc is also sending biopsy to Foundation One for genotyping and options for targeted therapy. Don't really know if it makes any difference so we will see.
She said no chemo may 26 as I fly out to nephews graduation June 1. Too risky and I want to feel good for nephs special time. So I am happy to have a little time to recover and feel good for a change. 👍. will be back at it June 8.
Everyone take care
Diana50
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Welcome to the newbies! Hope you all had a great Mothers Day! I sure did. I think my kids requested pic's with me as they now don't know how many more Mothers Days we have. Living with mets to both lungs, liver, bones - both hips and spine changes things. Every day has to be treasured truly. Another scan in early June will tell if Faslodex is working or not. If not then it is back to more chemo. The way I look at it.. if I lose my hair again.. better my hair than my life! Hugs to all.Cathy
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Diana,
You know me from when you joined the taxol board! You are not alone here. I may be way off here but I think that your onc sending your sample for the FISH test suggests that your result may have been equivocal when tested using IHC which is the standard test. I'll keep my fingers crossed. Enjoy your nephew's graduation later this month and especially enjoy your little chemo break.
Trying, Don't dwell on whether it was your last Mother's Day, or not. No one knows where we will be this time next year. My onc said he has long since given up trying to predict how well his patient's with Stage IV disease will do. He has had patients that he thought would go on for many years but who quickly succumbed to their disease and others who he felt had little chance of making it through the next 12 months but who he is still treating years later. We are all individuals and so are our cancers. In the meantime, I will keep my fingers crossed that the faslodex is working and your next scans show improvement.
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Hi all. I will be offline the next few days as I'm in the hospital trying to figure out if I have a blockage or what You're all in my prayers.
:-) Penny
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Penny
Sending you prayers from Palm Desert. Know while you are off line your peeps are here.
Spring. Thank you. Yes I remember you and others from taxols board. Thank you for your connection. My onc is of few words but she seemed pleased when she saw biopsy Her2 graph. Fingers crossed and prayers. Interesting at one time Her2 + was NOT good; now in 2015 it's status offers options.
I have so much admiration for all of you. Thank you for the info, the courage and truth you all speak. Spring; healing to you and good scans and results for all. ❤️❤️
Diana
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Well...Just like everyone else...I read every post ...but then when it's time to respond...My chemo brain doesn't allow me to remember all your names...but just remember I respect and love all of you and your comments are inspirational...
I have been off treatment for 3 weeks since my last great news I posted a ways back...Liesions have dispated on my liver...tm down from 436 to 200 and blood cts pretty normal...
So I go Thursday to start Havalon again..along with Felex....and my bone booster...I have to say I have enjoyed being NORMAL>>>> ha what ever that is...but in this disease...that's what I call it...I have been able to finish my landscaping and be around my grandboys alot more...
Mother's day was beautiful..spending it with my extended family and my daughter...
I have a bigger surprise happening today..that my daughter doesn't know yet my I am flying in her Dad for 2 weeks ...This is a long story...but something that we both need...We have been very good friends since we split 1998...And have become closer this last couple years just via phone...anyhow...she has NO idea he's coming today...so we are surprising her at work...around 1pm Idaho time...I love doing surprises..especially for my kids...
So Update later...Love you all Carla
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Thank you for your kindness Springwatch! RedWolf - Praying for you also. Keep up the fight!!Cathy
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Hi everyone. I don't post very often but read every day how you are all doing. Last time I posted I was about to start a clinical trial. It is oral and it has only a number at the moment(azd4547). I have entered the trial at stage II. The dosage has been determined but not all side effect s known. The drug works on Fibroblast growth factors which are present in the blood and may stop treatment from working. I have just completed first cycle and Ct scan shows liver tumours have shrunk by 30% and lung tumours are less. I am ER plus and the last two chemo have not worked for me. I have had no side effects other than h air thinning. I feel really well and have actually gained weight. I had lost over 28lbs.
Torrid on I am also from the UK and have had lung bone and liver mets for 3years.
Good luck to all waiting for results and I wish you all good days.
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Mutherflush,
I am glad your trial med is easy on you , the important thing is that you have shrinkage , i hope it continues to shrink. What kind of a treatment is it? Chemo or biological? And how long will you be able to stay on it if it works? Does it have a limited time? I believe gaining a bit of weight during treatment is so much better than loosing it , it keeps you strong . I remember my onc telling me this at my first dx back in 2010. I hated the fact that then i gained about 20 Kg lolll i was really huge . Now i gained 7kg . I have one session of taxol left this coming week , maybe i can diet a bit . But i still have to stay on hercept/perjeta. And anti hormone meds. I wish you stability in the least or NED if we are lucky.
Keep us posted and be well. I am really happy for you.
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Mutherflush...I'm happy to see your post...and it's such good news that tumors are shrinking on your trial!! Hopeful ses stay away & you keep feeling good. Prayers you are among the first of many, many who are healed on it!
Oh Spring...I feel so stupid!!!! I temember you had your surgery & the pain you were in before..and I totally spaced...Springlake is the runner...you are our Watcher of all things Spring!!! I'm sorry..sending you love & thrilled you're healing well (and hearing Woody's voice when you're standing w/one crutch..lol).
Diana...so glad you're getting more testing done. I remember my surgeon's call after my lump w/my first dx-already knew IDC, but she said-good news: no lymphs involved, bad news:her2. Fast forward a few years (& 2 more dx) good news:her2. Thank you, herceptin/perjeta. I know it still has its curses, but if these drugs can work as long as possible, I'm so thankful and hopeful for any sister facing the same.
Freebird...I hope your reunion goes well....that's a long time to be separated, but maybe that absence & fonder saying will work :-).
Tryn...it seems sometimes every thought I had, every step I took, I measured in the number of times I had left to repeat them. I think it's the nature of the beast. But Spring is right...my onc, who early in my first treatment, said she'd never tell a person how long they had left, told me w/my mets dx that I would be in chemo for life..and that would probably be 5 months. That was 29 months ago...the last 6 on only h/p/let. That said...I'm like everyone else...hoping, praying this works forever!!! So...enjoy those pix...and plan for many more to come!!!
Woody...still singing praises for the great news you've gotten!!!
Penny...asking the Great Healer to keep watch over you!!
Laura...how are you feeling after Halavan???? Thinking of you!
Leah....wondering how tx is going???
SyrMom...thinking about you!
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Hi Woody. The treatment is biological and I will be able to continue with it until it stops working. First phase gave breast cancer patients more than 24 weeks before any progression. Hoping for at least the same. I too believe in the power of prayer and my faith ls what keeps me positive. We all have dark times and I have had four months of sheer hell(could not walk or eat and really weak. Needed a wheel chair) but I'm back and ready to fight again.
Thank you Ronnie for your support. I know from the posts that you have been a source of comfort for a lot of people on this site.
I will keep you posted with my progress.
God bless you all and I wish you good pain free days.
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Penny, I will be thinking of you and hoping you will be back here soon to update us on how you got on at the hospital.
RonnieKay, You are not stupid!! No need, whatsoever, to apologise! I am improving a little bit everyday. Less pain, less swelling, more mobility and most importantly more freedom to be independent. It has been so frustrating these past 10 weeks having to use two crutches. You are completely reliant on others to get you all your meals, do your laundry, etc. I could not even make myself a cup of coffee and carry it to my comfy chair, if that's what I wanted. Now I can (woody - they said it was OK) get about on only one, I feel free.
Freebird, I hope your surprise reunion yesterday went really well. It is along time to be apart but time does heal old wounds.
Motherflush, Great news that your trial meds are working. I really do feel that having our medications tailored to our type of cancer is the way forward for now but my guess is that immunotherapy will ultimately be the cure. Good for you going on the trial as it will ultimately help everyone.
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Yes ty for your support RonnieKay! My onco would only say it depends how I respond to treatment.Cathy
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Sure wish I did not have to look for this forum, but here I am. On April 18,2015 I had alot of pain and bloating, by Sunday morning April 19 I had horrible pain in right side. DH took me to ER, They ran, CT, ultrasound, etc. flew me off to Odessa Tx. I went home on Monday April 20th. Saw my ONC on April 25th. Breast cancer mets to the liver. Pet scan on April 28, saw ONC on April 29, mets confirmed. On May 7th I started on 2000 mg of Xeloda a day. So far so good, having leg cramps at night and very fatigued. Get my CBC tomorrow at our local hospital. We live in Fort Davis, TX and have to travel 200 miles one way to cancer center. I am 14 days on and 7 days off. CBC every week. I think I will lay down for awhile.
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Mommarch, sorry you have found your way here. I hope the xeloda works well for you. There are several ladies here who have been dealing with liver mets for years, so don't despair.
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Agreed, Mommarch...we're here for you! I couldn't do this journey without our sisters!!! What a whirlwind you've been through...I think we can all relate to those first days, & weeks of this dx. This disease is so fickle, I had no clue my liver was filling up with tumors. Thankfully, things moved fast to get you to tx. Glad for your being able to take a pill firm, living far from your center. May xeloda be the answer to kicking mets to the curb!
Yes....we all need to be here when they finally say immunotherapy for all!!! XOXO
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Mommarch,
Sorry you are here , it is never a good news to find out the cancer has reoccurred and specially in the liver. Yet here we all are. I am not saying it is all fun and easy but it is doable . I hope xeloda works for you, it worked well for a lot of other women, plus it is convenient if you live this far from the center. I have noticed something though in your post. There is no mention of biopsy to the liver. Have you not had a biopsy? If not , the you shoul ask for one. It is better to biopsy simply to find out if your cancer has changef charcter over time , it will give your doctors a better insight on how to treat you better.
We are all here for you to support you as we have been supporting each other for a long while.
My prayers are with you as I hope your med gives relief and keep the cancer at bay for a long time.
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RonnieKay,
God bless you for making all these ladies here feel warmth and care . You are right we have not heard from Leah for a while . I was wondering about her yesterday. I hope she answers so we know if nevalbine is working for her.
Lollll i worried about spring because she was so much in pain, and i know she would want to move , but now i am glad her doc told her it is ok on one crutch.
Miss you , i hope all the family is well kisses to your sweetheart Margaux and to you xoxoxoxo
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Hi everyone
I'm in my doctors office, getting my third chemo. Met a woman who just came for 6 months check up with a new born (!) baby. We got to talking and she told me that she came to my doctor from Sloan Cetering where they basically told her Sorry but Sorry, go get your affairs in order.... She is stage 4, TN with bone mets now in remission and a month ago she gave birth to a beautiful boy! Is not it amazing?!!! Could not wait to share it with you. Wish you all the same happy story (well ...not necessarily with the baby ;-) )
Xoxo
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