How are people with liver mets doing?
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Cross posted:
Husband…I am hoping Xeloda is gonna do great for your wife. She really is blessed her cancer has not seen a lot of chemos…mine… well thats a whole other story.
I am now considering…. stopping treatment after the enhertu… I will scan in July but as my MO says "I am really in tune with my body and know when I have progression". and its true. So when I went to FL for the trial…after the 2nd treatment my bilirubin dropped and my liver pain subsided…I thought wow this is working!!! Then 2 weeks later bilirubin back up and liver pain back…progression… I was right. I thought at that point… "I think what happens now is, my cancer see's a new treatment and initially responds…but then smartens up and stops"… this explains why Travera and such would show my cancer is sensitive to certain treatments..bc it is … INITIALLY…but then after it sees it again..it stops. I believe this is happening right now with Enhertu. Had 2nd treatment… my liver pain subsided for 5 days!!!… my bilirubin went from 1.7 to 0.6…. now yesterday.,…. liver pain back…. bilirubin wont be checked until July 3.
Im just sick of this. I need to accept the fact that NOTHING is going to work…really there is only Abraxane and Vinorelbine left anyway and I am NOT doing abraxane it showed ZERO response on Travera…. Im pretty much … DONE…. So I believe by scans July 17th results the 19th… thats it for me. I will live out my time and be done.
This disease sucks….and one of the things I am realizing I hate most about it…. is the HOPE…the hope that "oh I jut havent found the RIGHT treatment yet"…and being let down. I mean some people are on 1 treatment for 5 years or more…I never even got more than 3 months… I cannot honestly expect my cancer to respond to treatments when its seen 10 treatment lines… sickening… this is not me being "negative" this is my TRUTH…. Rant over…
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@nicolerod I’m sad this disease has been so particularly brutal for you. It seems so unfair. You have been fighting so hard with everything you’ve got and yet this beast just won’t relent. I hope as you see this through to the end that you still make precious moments with loved ones and are able to embrace the love that surrounds you. You have a gang here at BCO that would beat the crap out of your cancer if we could. Instead, all I can offer you is a prayer and an ear to listen. This disease really sucks.
My liver biopsy results are in. I’m HER2 low and my ER has gone from 100% to 50% and my PR has gone from 30 to 0%. I’m on day 13 after my first Enhertu infusion. It has not been easy to say the least. It has been really tough physically which then impacts my mental strength to fight. I’ve always been sensitive to drugs and this one has hit me the hardest of anything I’ve taken so far. I’m going to ask for a dose reduction next round. I need some type of quality of life. I don’t want to just exist. I want more from the time I’ve got left even if lowering the dose reduces my time.
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Thanks Rk..sorry to hear about your ER and PR unfortunately that's what happened to me..and next step was
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@nicolerod, I feel like my story echoes yours. I am now so bloated that eating is difficult, guess it is liver mets. I'm also on oxygen most of the time . MO doesn't like to discuss what's next which is a clue to me that there's not anything. I don't feel that I get much out of Enhertu. Maybe a little is better than nothing? Have appointment this Friday and will be asking some hard questions.
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My CT report from 3 weeks ago did mention pseudo cirrhosis. This has been active the last 3 weeks and Mets may be slow growing. If pseudo cirrhosis is this active I don't think there's anything I can do further
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Dear Nicole, nopink2019, rk2020, I am sorry you suffer so much. Hope is a strange thing in human life… animals don't have it and live in a moment. We though, both are blessed and cursed with it. People are the only creatures who plan for the future, and this is where hope comes from. I believe there are moments in our life where we should forget plans and focus on now, however hard that might be. And so, what happens NOW? Nicole, your BIL jumps up and down, means something is happening, means something is working, especially in first days when drug concentration is highest. Nopink2019, you are so right - little is better than nothing. Rk2020 - if you feel bad, these bad cells also feel bad (our MO's words). No hope, just now, step by step, day by day. I am with all my heart with you all. Big embraces,
Saulius
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My wife has lived for 5+ years with severe pseudocirhosis following initial treatment. It's not necessarily the end. If you are getting ascites, they can drain it, give you albumin infusions, give you diuretics to slow the accumulation of fluid. Also, they can do a tips procedure if its caused by hepatic hypertension.
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husband, thanks for the encouragement. And for bringing up some options I can mention to Mo on Friday.
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Saw MO Friday. PleurX working for me, but nothing else. Abdomen very full, but they did ultrasound ¬hingto drain Referred to hospice. Best wishes to all & I hope you get long results from your treatments.
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@nopink2019 I’m so sorry to read your latest post. In the quiet moments of my day, I will keep you in my thoughts and in my heart. I wish you comfort and strength. ❤️
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@nopink2019 I Just wanted to jump over here and see how everyone is doing. I saw your post. You will be in my heart and in my prayers tonight when I talk to God before going to sleep. During the day when I talk to God I often do short “breath Prayers” I and I will be doing a lot of breath prayers for you. Sending you loving thoughts, and comforting vibrations.💗
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Nopink- I'm sorry to read your latest post. I hope you can feel the love and support of all of us here on the bco forum I wish for you, .
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Best wishes nopink for calm, love and still some joy (where possible) in the days to come. Ill be thinking of you.
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@nopink2019 - wish I had “the right” words. So sorry to learn you are moving to hospice care.
Prayers and virtual hugs coming your way.May you have many months of relief from treatment side effects on hospice. May hospice provide you relief and comfort
You have comforted so many of us with your posts. Sharing information, experiences, and compassion for others are characterized traits when I think of you.
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I, too, will have you in my thoughts, nopink. Sending many hugs your way.
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Nopink2019, you are in my thoughts and prayers.
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Nopink2019
I am so sorry to hear that you are moving to hospice, but hope that you receive the best of care and are able to be pain free.
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@nicolerod — just sending you a short message to tell you I was thinking of you and sending virtual hugs and prayers
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@nicolerod Also thinking of you. Please pop in with an update. 🩷
Because my local MO only has Enhertu experience with 1 other patient, I reached out to my second opinion doc yesterday and laid out the impact of Enhertu over the last 18 days. She indicated that I might benefit from a dose reduction. So wish me luck on Thursday when I get my next infusion. It can’t be worse, right? On the bright side, the “sore” on my hand that’s been there for over 9 months started healing within days of getting Enhertu and is now just a light scar. It must have been a skin met and Enhertu knocked the crap out of it. I hope it’s doing the same in my liver. 🙏🏻
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rk2020, I would take that healing of the wound as a good sign. Let us know how the dose reduction goes.
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We decided to stop Enhertu bc my bilirubin is back up and liver pain all back….and I am going to try my last treatment…of the BRCA gene drug.. sorry I cannot remember the name but its a PARP inhib…starts with a "T"…. anyway…after that…which it probably wont work I have decided Im done. no more treatment…I should have hopefully a month or 2 to live.
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Nicole, my heart goes out to you. I really don’t have any words of comfort, tho I wish I did. You are an amazing woman and I have admired you since the very beginning when you started posting on this forum.
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Thank you Divine.
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@nicolerod - We can only imagine how difficult it was for you to make this decision. Keeping you in our thoughts. You know this amazing community is here to support you through this.
Best,
The Mods
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@nicolerod Never forget what an amazing women you are. You woke up every morning and fought the same demons that made you so tired the day before. But sometimes, even warriors have to lay down their sword. It’s ok. I hope you can feel all the love that surrounds you and that it provides comfort. I’m sending you hugs for when your spirits sag. ❤️
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Mods…thanks… but its not difficult bc I really have no choice. There is nothing left. I have exhausted everything.
RK thank you so much.
I do want to say something though to all the "long termers" here…. When you have people like me, where treatments keep failing.. please consider refraining from telling them "You just haven't found the right treatment yet"…. please stop telling people that,. What that does is give false hope. Just because you are on your 1st or 3rd etc….treatment and it has been keeping you NED for a year or for YEARS…doesn't mean that is going to happen for the other person. Although you think you are being encouraging its actually discouraging when NOTHING turns out to work for the person…especially for those that flip to mTNBC. Its much better to just tell the person how sad you are with them that it didn't work and that hopefully the next treatment will have better, more long term results.
Please know I am not being nasty here but I am in MANY groups besides on here…. and this is not only discouraging to me..but to others…especially when NOTHING works. We feel like failures and actually it made me also feel envious…like "why can't something work for me"….especially when someone (just for example) is on Ibrance taking a simple pill everyday and getting 5 or more years out it…telling me "I just havent found the right treatment"….or someone with HER2+++ says this stuff…they have no idea obviously how different mTNBC is and our options and responses.
Just food for thought.
*** EDIT TO ADD IN: I just wanted to mention that this is something I have wanted to mention for a LONG time and I didn't…but now I felt I needed to***
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@nicolerod I’m with you. It makes me even more sad that I’m not a “super responder”. It’s like salt in a wound. Thank you for verbalizing what I’ve always been thinking.
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Nicole,
While saddened to hear your news, I wish you comfort and peace during this time.
I appreciate your comment about how positivity can sometimes make things worse when one is struggling. There really is a fine line between encouraging and hopeful and unrealistic positivity. Take care
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Nicole- and others- I agree- when people say "Hair grows back"- not appropriate if you have never lost yours
"You got this", "I'm tired too" "Just be positive". "just take this supplement".
Horror stories are the worst, being told about people I don't know who had a lot of suffering- not helpful.
Nicole- you make good decisions and are very knowledgeable and curious - I think of you often and wish the best for you.
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My thoughts and prayers are with you Nicole. It is difficult to find the right words to say but please know that I am thinking of you.
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