How are people with liver mets doing?
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I just read it as well. I was standing starting dinner and a feeling came over me to check Instagram. Rest In Peace, Moth.
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Sleep well, moth... You were a treasure to so many.
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Rest in Peace Moth.
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I don't post much, but I follow and read this thread. I can't stop crying about Moth…She has supported and helped me so much personally, as she has done for everyone here. I remember a video she posted last year of her dance moves, on her deck - so beautiful, such a big smile on her face, so full of life! That's how I imagine her now, dancing with the angels, -no more pain, no more cancer. May the Lord put His comforting armsaround her family and friends at this most sad and difficult time. Prayers for Moth and her family -there are just no words…..
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Hi all...I don't know what happened to my message...but I typed a whole message and its not here.
So I had a CT scan of the lung today. We thought there was 1 lung met. Turns out there are 3. 2 in right that measure 0.4cm and 0.3cm and 1 in the left 0.5 mm . the one in the left was visible on the last PET in June but has not changed . The 2 in the right have had a teeny tiny bit of progression from June PET. ..but as you can see still very very tiny. In fact so tiny that they are too small to be biopsied which means that I cannot get into any trial. So with that said...my MO does feel that Trodelvy is doing something , that could just mean making progression go slower? so my PET scans were suppose to be Sept 2022...but since I just had the ablation to the last live liver met July 26th..and now had the CT of lung...we are going to wait (at my request) to Oct - 10 weeks to rescan and do PET . At that point either the lung mets will be big enough to get biospy and go to trial. Or.... we will just go to one of the few chemos I have left. We didn't want to go to one of those chemos now bc my MO feels "those will be here they are not going anywhere" and plus using them Gem/Carbo for example would eliminate me from one of the PARP trials that combines with Carbo if I use it now.
Any thoughts?
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I had my 3 month scans this last Monday. I saw my MO the same day. She said all is stable and to continue the same treatment and rescan in 3 months. I have been on Lynparza for 1 year now.
The scan reports did not go to the patient portal until today-- 4 days after. I read and compare my scan reports each time. They can be confusing. My lesions have always been in Segments 3 and 4. May's report mentioned a lesion in Segment 6 as probably a "cyst"-- guess they can differentiate from the looks of the lesions. ?? Anyway, this scan mentions that Segment 6 "cyst" again and also now mentions a lesion in Segment 8 as "unchanged from last time" and "too small to determine type". No scan reports before ever said anything about Segment 8.
So, is there new cancerous lesions in Segments 6 and 8 now? Radiologist said "stable", and MO says 'stable". I am not going to stress. It is stable.
But, how do you all report on here that you have 1 new lesion and BAM you have progression and moving to another treatment? My MO seems to think "progression" has to be obvious. My first progression-- when I went from Ibrance to Lynparza-- we had a few months of small steady growth of the lesions before we said "Yes, progression" and moved to another treatment. And now I feel I have to have obvious explosion of many lesions to say "Yes progression again".
I guess I am glad my MO is not ready to jump when small stuff crops up. Conservative I guess.
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candy,
That is a really tough question and your doctor's response may vary based on how long they think you will live and the aggressiveness of your cancer. If you have super aggressive cancer, they will likely switch treatments at the first sign of progression. If you have a more indolent cancer, they would likely want to wait for signs of more marked progression. And, of course, every doctor approaches this situation differently.
Hugs, Susan
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I’m starting to get really worried. I did one round of halaven and it landed me in the hospital so now it’s off the table. Lynparza is the only option left if they let me take it. Due to my severe liver disease it might not be viable. I’m not ready give up and let time pass till I die. My husband thinks Lynparza is a bad idea and I don’t blame him . He’s been seeing me suffer but I can’t help but wonder if it could be my miracle drug. I’d always wonder if I’m making the right choice. This is the first time I’ve entertained the idea of death and it is only bc of so little options and pain. This is the. Worst
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b-a-p, I am in a very similar situation. Last week my MO asked me to get all my papers ready in case some thing happened to me.
She said I was getting sicker every week, my abdomen was swelling every week and my legs are already swollen. Having said that, she assured me that she is not going to give up on me. This was very depressing and I slept most of t the next day. It has been hard on my kids but I promised them that I'll be open about every thing with them.
When my MO asked me if I needed to talk to a social worker I said no my family gives me a lot of strength. I am on Enhertu right now (less than 50% ) and I am hoping it would work.
S
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b-a-p,
So sorry to hear that Halaven put you in the hospital. I think it only kinda worked for me. Mixed progression, slightly lower TMs. Switched to ARX-788 after just two months.
I don't see Xeloda on your list. How about Gem/Carbo? I see you've been on Epirubicin a while back but Doxil might still work. Those are all tried and true chemos so should be available to you. Trodelvy? Although you've been on Ibrance, Verzenio may work for you. I bought another six months on Verzenio after being on Ibrance. Are you BRCA? They think Lynparza might work on other genetic mutations but I don't know if there are any studies about that. Also, what is your HER2 score? Being HER2 2+ has opened up a whole range of HER2 drugs.
It's not over 'til it's over.
Hugs, Susan
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B-A-P and S3K5, I am sorry for the challenges you are both facing. I always act like I am going to live a normal lifetime, and I find it difficult when I experience progression and bad news.
B-a-p, I wish I had some sage advice to offer, but I am at a loss of words. You have overcome multiple obstacles to reach this point. I hope that you, your dh, and your MO can find a treatment that will be effective for easing your pain and improving your condition. I do understand why your dh is reluctant to agree to lynparza, but I also know why you don’t want to dismiss an opportunity to at least try it. I pray that your MO will find an effective treatment for you, one that will reduce your discomfort while prolonging your life. ((Hugs)).
S3k5, I hope that Enhertu beats back your cancer. You are blessed to have such a supportive family as well as an MO who is determined not to give up on you. Please keep us informed ((Hugs)).
I lost the last message I tried to post, so frustrating. I hope this one sticks. You are both in my heart
Hugs and prayers from, Lynne
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hey everyone. Chemo is off the table. My body cannot handle it. It could handle ibrance but everything else chemo wise that I’ve tried within the last year has landed me in the hospital. Halaven was at an extremely low dose and mat year I had Gem/carbo I almost died. Enhertu I might ask about but I don’t think we have access to it.
As far as Lynparza goes I want to try but it can cause problems with the liver in those with sever disease which i have. I hate the lack of options. I hate my pessimistic attitude. It’s just been hard
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BAP - I hate that you are going through this and I wish I had some awesome words of comfort. Instead, I’m just going to send you positive vibes and a big ol’ hug. Know that we are here to listen whenever you need to vent.
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thanks R
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B-A-P, I'm also sending virtual hugs. I wish I could offer some advice but it's so crappy being in your position.
It's so odd how differently our bodies behave with these drugs. I couldn't tolerate Ibrance, my red blood cells tanked. And while I can tolerate chemotherapies well, so far only Xeloda has worked for me (failed Taxol, Navelbine and Halaven) but my marrow doesn't like it. I have an appointment on Thursday with my MO to discuss strategy as last year he had me stop Xeloda after six cycles - not sure what he will want to do now that I have reached that milestone again as clearly I will simply progress if I stop. I’m also running out of options as he believes I am endocrine resistant.
Do you have other hormone related options you can try? I think others may have suggested Verzenio. It worked for me for quite awhile and can be used as a monotherapy. Sorry, I’m not sure what you have had in terms of treatments and everyone’s profile is so messed up now. Hope your MO can get you on a treatment that works and that you can tolerate.
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b-a-p: S3K5: I am hoping the best for you. Wish I could do more than send virtual hugs.
50'sgirll: me too. I look "normal" and mostly feel normal. Am I still living comfortably in Denial?
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Hugs to you BAP..I hope you get some reassuring news with regards to possible treatments are you looking at trials?
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So not good news today. Liver is covered in tumours after being off chemo for only 8 weeks. Going into Palliative care for a few days. Sounds like they want to keep me there til I die, but I'm really going to try to come back home for a bit. DH is devastated, I'm trying to school him in banking & paying bills online.... OMG.
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Gg, Dee, I don’t know what to say. I know that no words will make the situation any better. You have been through so many treatments and clinical trials. I remember when I first joined BCO. You gave me so much support when we were both on Arimidex, and you continued to help me and so many others after that.It seems like so long ago now. Your latest news must be a shock to you in spite of the fact that you have been experiencing so much pain and discomfort. I hope that a few days in palliative care can bring that pain under control and provide you with some comfort and relief. Is there any chance that your medical team will try another treatment or is that off the table now? You and your dh are in my thoughts and my heart as you go through this difficult time.
Hugs and prayers from, Lynne
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gg27, I’m so sorry to read your news. Ugh what should have been a nice break from treatment has turned into a nightmare. I hope the palliative care folks can get you feeling better enough so that you can go home. It’s truly scary to see how quickly we can go from “fine”, “fine”, “not so fine”, to “get your affairs in order”.
b-a-p can you ask for compassionate access to Enhertu? I hate that the options get very limited very quickly. Or so it feels.
S3K5 I’m watching how you respond to Enhertu; I’m hoping I can get access to it maybe through a clinical trial here. Fingers crossed for you.
Ann
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Dee, my island neighbour, I am so sorry to hear this. You have been such an enormous support and inspiration to me as you navigated our system to get on trials and gain access to treatments. I hope that a few days with the palliative care team will provide the level of support you need to get home with your family. My thoughts are with you and your husband at this difficult time. Sending hugs. Pat
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Dear all, I just came back from short holiday and got to know about Moth... RIP dear friend. I hate this disease. But we'll have to continue marching on, in the name of those whom we love and who are not with us anymore. Saulius
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Hi, Enhertu is available without a clinical trial if you are Her2 low. FDA just came out with approval for the drug after the Destiny4 BC trial results, insurance should cover if you qualify. I'm at the point where I was told I could take a vacation/break for 2 months. Scans are clear but markers are going up- on Taxol right now, have had 26 infusions so far since November. It's only been 10 months and I was hoping for at least a year. At 75 years old, doc thinks I should have a break back to more normal times (less neuropathy) before starting the next drug. I'm afraid if I stop that I will run out of drugs sooner. Might as well continue on Taxol til it really doesn't work. Any thoughts on that? How long has anyone been able to stay on Taxol?
THANKS ALL
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Hi Ninaca,
I don’t think taking a break will limit your options going forward as it’s exposure to the treatment that leads to resistance. I’m in a somewhat similar place. Capecitabine (Xeloda) worked well on my liver mets last year but after six cycles my MO wanted me to stop as there were clear signs of toxicity to my marrow. I progressed, tried two alternate chemos that both failed and then went back on Capecitabine. Once again it has beaten back the liver mets and my tumour markers have fallen each cycle. Yeah! Now, after six cycles he is once again thinking I should take a break as, in his words “It will just drag you down”. We’re holding off on a decision until we see my TMs (should be reported in a couple of days). If my TMs go down more we’ll do a couple more cycles. If they have plateaued we will stop for awhile.
I know it’s a bit nerve wracking but I trust his judgment and his knowledge. You seem to have a slow moving disease, similar to mine which means we have time to let our bodies recover. Quality of life can be as important as longevity. 😊 Hope this helps. Taxol failed for me so I can’t help with that part of your question.
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Sadie- Thanks for the input. Exposure to treatment leads to resistance- I'll keep that in mind, but treat,emt also leads to holding back tumor growth. Since there is no clear toxicity to my marrow, the only reason to take a break would be the toxicity to me feet (he did comment on future bone marrow damage if I continue now). I feel I can live with that and not be anxious about the return of the cancer while on a break. I may just wait until next week when I get my tumor markers again to decide. My MO talks about balancing qualify of life with longevity, cumulative toxicity is what he worries about. Am I willing to see growth of tumor markers/cancer on scans during a break- I don't think so, even if it will happen no matter what I do. Just don't know. I've never really had a break since 2015, although Ibrance was easy and I stayed on just Faslodex after a liver ablation but had to go back on Ibrance again as markers continued to rise. My MO has said no going back to any meds I've been on previously, I see yours is tailoring his going back to Xeloda after giving you a break and seeing that it did work.
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Oh GG I just read your update. I was just wondering how you were making with the oral CM - it's so sad and shocking to hear the level of progression you've had in such a short time.
I hope the palliative team takes good care of you but that you will get your wish to go home.
Heather
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gg27,
I'm so devastated to hear this! There must be other treatments you can try. Please don't let them write you off.
Big hugs, Susan
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TMs have declined on eribulin, but SEs are really dragging me down. CT this week and see MO next for results & plan. Rampant fatigue, no appetite & numbness in feet up to knees. Anyone else had this tingling numbness? Can walk, but weird feelings.
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nopink,
Sorry the Eribulin is causing you these side effects. I haven't had that numbness feeling but sounds like neuropathy. I hope you've alerted your MO about this. Hoping the side effects will lessen with time and that the Eribulin is working! There's an Eribulin thread that might be helpful.
Hugs, Susan
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Hi. I have one liver met that just started growing like crazy these past few months. No other liver Mets and my lung nodules are stable. I had liver ablation in 2018. My liver was clear for years. The tumor is about 6cm now. I assume that is too big for ablation? Would sbrt be most appropriate? I was thinking y-90 would be best if I had more tumors. Thanks! The other liver forum is quiet. I am always checking in and reading (for the past 4.5 years) but don’t post much. I am on gem/carbo now but don’t think it’s working and will need to change.🤗
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