How are people with liver mets doing?
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I know this forum is only for those with MBC but I found that my mother, S3K5, was very active here. I'm devastated to share that my mom passed away at home this past Monday. She was surrounded by her 3 children, husband, mother, sister, brother, sister-in-law, two son-in-laws, a friend, and 2 month old granddaughter. Thank you so much to everyone who showed her support and love over these past few years. Please feel free to message me directly as I do not want to further intrude in this space.
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Daughter of S3K5, I am so sorry for your loss. Your mom was an important part of our world, and she will be missed. I am glad that she was able to have her family with her as she became free from the world of cancer. I wish you and your family peace and comfort and hope that you find joy in the memories you shared
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DaughterofS3K5, I sent you a PM. I’m so sorry to learn of the loss of your mom.
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daughter of S3K5, I'm so sorry to hear your news. Sending you and your family warm hugs. Ann
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Dear Daughter of S3K5, I have no words... RIP our dear friend, Saulius
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daughterofs3k5,
So sorry for the loss of your Mom. Thank you so much for thinking of us. In too many instances, we wonder what happened to one of our dear friends because they stopped posting.
Hugs, Susan
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I have had significate progression in liver...CT of lung tomorrow..not looking good. just wanted to post update.
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Sorryto hear about your new progression in liver, Nicole. I hope your team can come up with a treatment that knocks everything back. Please let us know what happens next for you
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daughterofs3k5 - I am so sorry for your loss. I'm glad she was surrounded by family and I'm sure she loved that she got to meet her granddaughter. Thank you for coming here to tell us.
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Nicole - you have been in my thoughts. Holding out hope for a new treatment or trial that will help you.
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Dear Nicole, we all are with you... and pray that your team can find something to help you. Saulius
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Nicole,
Prayers and positive thoughts for you today. Hope that the CT scan has the best possible result and that a good treatment plan develops.
Eleanora
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Nicole- Thinking of you.
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Thank you all. After hearing about S3K....I feel hopeless...as her and I, are journey seemed so similar at times. Well it looks like 1 of the tumors in my liver my be elibigable for the CarT trial at NIH...but there are a LOT of hoops to jump through to even qualify..also I am torn on starting Gem/Carbo or just Gem.. Ithe NIH trial allows you to do treatment while waiting for them to test the tumor)... I am nervous also bc they would need to RESECT a tumor from the liver... my report meantioned some fluid and some dialation of a duct which I have never had so ...I am not very hopeful. I knew last year when I flipped to TNBC I would be lucky to get a year or 2 I already passed the year and now things are progressing faster than ever...statistics are no lie.
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nicolerod,
You are so involved with your care. I'm sure you will do better than the statistics. I will continue to send positive vibes your way!
Hugs, Susan
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Hi.
I don't post here often but lurk a lot and know there are a lot of great brains here So hope you don't mind my butting in with a question I am cross posting from Xeloda thread. Hope that's okI just received my scan results. The first Pet/CT since 10/21 (I had am MRI in February after liver Mets appeared after 2.5 years of bone only on Ibranxe + Faslodex) my marker numbers have been going down so my doctor didn't seem to see a need for a scan (maybe that was a bad idea??)
I won't speak to my doctor until Monday. So would love to gather some of your thoughts so I can formulate questions before then Especially from ladies living with liver and bone Mets for awhile.
I have had a good year on Xeloda and am living a normal life. Before this scan, My doctor said if the results were mixed we might try zapping the liver and any new bone spots and stay on Xeloda. When the liver Mets first appeared I met with a radiation oncologist about y-90 but he advised waiting and seeing.
But not sure that really works? If new spots are showing up does that mean treatment isn't working? Or does the fact that other areas are decreasing mean I can eek more mileage out of current treatments?
I so don't want IV chemo (not that anyone does…hope that's not whining). So maybe a trial? Or maybe stay on Xeloda a bit longer? Does upping the dose help? I am on a low dose right now compared to some—1000 2x day. .
Anyway here is what the summary of the report says. Maybe some of you longer-timers can give perspective and questions I can ask…or share your experiences? Has anyone tried radiation on rogue spots when other places are resolving and stayed on current treatment?
"Compared to 10/20/2021, decreased hypermetabolism of previously described right hepatic dome metastases and known osseous metastases (ie. manubrium, right sacrum, left iliac, and right humerus). However, new and increased extent of hypermetabolic osseous (ie. sternum and left humerus) and hepatic metastases (as indexed above)".
Thanks so much!
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Nicolerod - This is a tough pill to swallow. Cancer blows. Know that I am thinking of you and hoping that your interim chemo gives you super powers! Hugs. ❤️
On a personal note, I'm starting a clinical trial drug on Dec 1. This will be my 4th line of treatment. Xeloda knocked back all my liver mets and almost all of my bone mets but after 9 months I’ve had progression - 1 2 cm X 2 cm liver lesion and several new spots on my bones. I’m excited and hopeful because this trial is a really good fit for me. If I want a cure, I've got to try. And even if it doesn’t work out for me, I’m happy to do my small bit. 🤞🏻
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rk2020
Can I ask what the trial is? Here’s hoping it’s a success!!
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rk2020, What is the clinical trial you will be joining?
pb, First of all, I would say that it is neglectful of your MO to only give you scans once a year. Most of us have them every three months. Secondly, sounds like it may be time to switch treatments given your progression. Zapping spots doesn't negate the underlying issue that you are progressing on Xeloda. Also, you need to look carefully at localized treatments to the liver. I don't think any of them has been shown to increase survival and the radiation may damage your liver.
My situation has not been good. My 1.7cm liver tumor is now 6.3cm, though strangely, the tumor right next to it is unchanged. Progression in my brain (2 3mm new lesions), in my lung, and now effusion and small nodules outside of my heart. Hoping to get on the PY-159 trial on 11/29. Had a liver biopsy and EKG on Friday. Will zap my new brain tumors on Wednesday.
Hugs, Susan
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Susan—. So sorry to hear about all this progression. And how awful to have a brain zap the day before Thanksgiving. I hope you can get on the new trial—you have been through a lot.
Thanks too for your advice. I am concerned about my MO to be honest. And agree I should have had scans earlier as I am missing some data points that would be helpful to know.
I am also in the Bay Area and started off with your MO but her bedside manner gave me PTSD. I now regret the decision to switch. Not sure what to do. Am thinking of getting second opinion at UCLA and possibly look at trials there. My daughter is at USC so it gives me an excuse to see her.
Or I eat humble pie and go back to Hope.
Or ask why my current person delayed scans. Maybe there was a method in his madness. I vacillate on whether or not I trust him. He came highly recommended but is in private practice so not sure if that is wise. Other than this I am in terrific health. Bloodwork all normal etc.
anyway enough about me. You are frying much bigger fish so it was kind that you responded at all!!
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susaninsf- What a coincidence. When I met with a research oncologist, she offered me PY-159 and BLU-222. I also had my liver biopsy on Friday. I just may try PY-159 in the future but right now, BLU-222 is such a good fit for me that I felt compelled to go that route and I start Dec 1. Immunotherapy may just be different enough from all your other treatments to be the cancer slayer you need. Best of luck Hugs.
Pbsoup -BLU-222 is a CDK2 trial. A Guardant 360 liquid biopsy indicated that I have a CCNE amplification which is known to hyperactivate CDK2. CCNE amplification is not necessary to be included in the trial but they are looking for patients like me. Aberrant CCNE has been shown to promote resistance to CDK4/6 inhibitors and other therapies. It has been my experience that treatments work well for me at first (either to stabilize or shrink mets) but their effectiveness quickly dissipates. So I’m hopeful that BLU-222 may be my magic bullet. If not, I’ll consider PY-159 or one of several standard of care treatments still in my toolbox.
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rk2020. I think we’re speaking on Facebook. Or someone with your initials lives a parallel life…😅
I am planning to ask my MO about this on Monday. I am definitely thinking the trial route might be the way to go if I can find one close by. My QOL is very high right now and I hope to maintain it a bit longer. God willing and the creek don’t rise as they say.
So grateful for all the brilliant supportive women on my various boards. Hope I can pay it forward.
XxP
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pbsoup - yep, it’s me on FB! I answered both places in case someone else was interested in our thread. I’ll be interested to hear what your MO says on Monday.
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susaninsf-you've been thru alot. I applaud your MO for finding so many treatments to fit your changing circumstance. Keep at it, girl! Main point is to thank you for comment about rads for liver mets. My lung mets seem to have cleared up or at least faded into inactivity, but liver mets start growing after several months on each tx. MO hasn't mentioned rads and I forget to ask. Mets are fuzzy on CTs so I thought maybe there wasn't much point in targeting them. Think I had heard about the possible damage, but forgot.
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Dear Nicole, Susan, rk, pbsoup, and others, I just wanted to send you good vibes and encouragement in these not easy times. Also... BAP, how are you? Hugs to everyone,
Saulius
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Thanks Saulius.
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Dear all, has anyone had any personal contact with BAP? Saulius
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Oh I hope someone has been in contact with B-A-P! Come out, come out wherever you are BAP!!
Her last post was Sept 26.
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I had CT of Chest and Abdomen today and have multiple new and enlarging mets in my liver - none larger than 1.0cm. Also one new bone met in L1 - otherwise bone mets are unchanged. Not good news. This is worst news I've gotten since my initial MBC diagnosis in July 2019.
I'm in week nine of Everolimus 7.5 mg and Fulvestrant - both new for me. I see my MO on Friday (my birthday). A liver biopsy done in Aug showed ESR1 mutation and CCND1 amplification. My MO has mentioned the new SERD Elacestrant but has said she is not overly impressed with the PFS. Although what I read re the Emerald study is that Elacestrant is especially effective for the ESR1 mutation. I have no idea if Elacestrant would be considered for me now given the progression in my liver. I have trust issues with my MO, but do have a second opinion follow up Zoom appt next week with a Mayo doctor, whom I like.
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weninwi - Well…that sucks but not surprising that Fulvestrant/everolimus failed if you have an ERS1 mutation. But still disheartening. I will tell you that Xeloda did a good job on my liver and bone lesions and it was my easiest drug yet. Please let us know what the Mayo doctor suggests.
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