How are people with liver mets doing?
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Nicole- Vent away. You have the right to yell and scream. I am so sorry.
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Bev Jen. Bummer. You've got so many resources ready and waiting. I'm curious to hear what Dr C says and your IR. So, we cannot hang out hats on TMs. Yours were stable and then this showed up. Always a guessing game for us.💞
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Thank you Grannax
I just feel bad that I am ALWAYS VENTING here 0 -
Nicole- we are here for you. The constant figuring out where we are at at treatment and where to go gets old fast. You deserve a break. I am glad your bone Mets are stable and know you have options for solitary liver tumors. Just sucks you have to decide at all.
Hugs.
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Thanks Candy and LFF
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Bev Gen - Sorry about your report. FYI my Sister has been on Opdivo for 5 years for lung cancer with PFS. Yesterday was her 9th year from original diagnosis. She is a lung cancer miracle. She has some SE from the immunotherapy but pretty good quality of life considering her choices. (she eats poorly and does not exercise and takes a lot of pain meds from the lung surgery SEs) I also know of someone who took immunotherapy with fallopian cancer and got a good 1.5 years on it with little SE. So immunotherapy can be a great choice. Hope your get the right "secret sauce"!
NicoleRod - I understand your focus on getting yourself well in the midst of happy events. Hope you get the scans moved up. Just remember that you can enjoy the day for the gift it is. Don't borrow trouble from tomorrow.
I saw Dr Hamilton at Sarah Cannon. It was an initial assessment. They are holding a spot for the CDK 2/4/6 trial. But, after closer review of my records, they want to check on a couple more trials that could be good options since I am 100% estrogen and have the ESR1 mutation.I believe she is looking at the some serd trials including CERAN NCT04505826 and ARV-471 NCT04072952Plus a couple others that she did not elaborate. They want to make sure the hypogammaglobulenemia is not an issue and number of chemo allowed. They are contacting the pharm companies to be sure.
SC will call me on Friday afternoon to suggest a path. Looking back, I think the large liver tumors grew the most while on chemo . FYI - they recommended holding the Afinitor so I can start flushing out for which ever trial since some are 2 weeks and some are 4 weeks. I will probably be getting a biopsy no matter what and they will send off extra to Foundation 1
I spoke my IR at MDACC. He was pleased with the local therapy results. He did not have a suggestion for someone in Nuclear who could be my advocate for PRRT for the Neuroendocrine. He did say Lutathera is a lot of radiation so he recommended pursuing systemic therapy for now since the new liver tumors are so small. If there is a large stubborn tumor in the future we could look at embolization or y-90 again.
I see my new MO Friday morning for bloodwork, IgG levels and to check on the neck lump. My lymphedema OT did not find the lump so maybe it it was just something temporary.
The dotatate scan was hot for SSTR+. Spoke to Dr Lisa Bodei a prominent Nuclear medicine doctor at MSK who specializes in the PRRT therapy. She said it is possible but a long shot to get it approved by insurance and no real data on using Lutathera on Breast Cancer. She wants to see the latest Dotatate scan and may move forward but will consult with the breast team. At least she did not say no!
So I am waiting to see what Sarah Cannon has to say about their trials. Trusting God while I am waiting.
Dee
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Nicole,
I'm with Dee. I understand your frustration, but take the day for what it is. Enjoy your weekend. Then move on with purpose, and hopefully you will get your scans moved up.
Dee,
Wow, look at you! Terrific job of marshaling all of your resources. I am so impressed. And thanks for the info about your sister. I am a big immunotherapy fan, and because I have a ton of mutations, even though I'm ER+, immunotherapy has been suggested on my F1 report. But so has piqray. We'll see. Good luck to you with all of the cancer centers that you are juggling -- looks like a path will emerge soon.
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Cross posting from Ibrance thread ...
Hello everyone. Penny's husband here. I know her last post was a couple of months ago, after she was hospitalized with super high liver enzymes for what was believed to be drug induced liver injury. The thinking that the time was that was due to a new supplement she had taken, or perhaps even a long-delayed reaction to Ibrance.
I'm very, very, very sad to say that she passed away or August 20th. After being a picture of health through the end of June (42 cycles of Ibrance and NEAD for three years!) she declined very quickly. Scans of her liver up until the very end actually remained clear. It wasn't until the end of July that a biopsy showed that it was actually a BC metastasis rather than DILI. It was the super rare and invisiible "infiltrative" metastasis (she said someone here had posted a warning about it?) that quickly took over and caused her liver to fail. Attempts at treatment near the end failed as it turned out that her cancer had mutated to a very aggressive triple negative.
I wanted to let you all know because, while not the most frequent poster over the years, she found incredible love and support here. She found the courage and humor seen here to be an inspiration. She often told me about funny stories that were exchanged here. She considered you all to be dear riends.
We are of coruse heartbroken at how quickly her success story turned into a bizarre decline. I do hope you all keep the faith, and hold onto hope, and support each other on this journey with love and kindness.
Warmest regards,
Harry
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Hi Harry,
I am so shocked. I have no words of consolation except to say sorry for your loss.
Thank you for warning the others about this bizarre type of liver mets. which can be found only by biopsy. This is scary since we all rely only on scans and sometimes on tumor markers to monitor the disease.
Again, my heartfelt condolences to you and your family.
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Harry, I’m so sorry for your loss of dear Penny. Thank you for letting us know. She will be missed here. 💕
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Harry I am so sorry for your loss.
Can anyone tell me what DILI is?
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Nicole, DILI is drug induced liver injury.
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Harry
I am truly shocked and full of sorrow about your news of your dear wife. Thank you for taking the time to post a note to the group. Prayers for your healing and sympathy for your loss.
Dee
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Harry- thank you for taking time to let us know. I’m sorry about this terrible turn of events in Penny’s treatment. Also,so very sorry for the loss of your wife.
Are you not able to see infiltrating liver tumor On scans?
Nicolerod - you have every right to vent and you deserve a break. I pray that this liver pain is something other than growth.
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Dear Harry, your words mean a lot and I am grateful you took precious time to let us know what happened to Penny-78.
We lose contact with so many of our BCO friends and we never know what happened. Closure is important to us, too as we bond over this dreadful disease on so many topics.
Thank you especially for letting know her cause of death was from a rare form of BC and that it turned into aggressive triple neg. We learn from each other.
I suspect she would want you to continue living your life and have joy and laughter in your future. That is what I would wish for my husband.
Peace to you, Sandibeach57
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Harry, Thank you for letting us know about Penny’s passing. I am sorry for your loss. She went much too soon. I wish peace to you and your family. Although the pain you feel now will never completely heal, I hope that it will be eventually be replaced by joyful memories of all the moments your shared with Penny.
Hugs and prayers from, Lynne
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BevJen, Wow, whiplash of a pathology report!! You seem to be on top of it, and be aware that rising glucose is a direct on-target effect of Piqray, if it did not increase it would mean the drug is not getting into your system.Your goal is to keep it out of danger range. Nightime restricted feeding (ie a 12-14 hr fast each evening) can strongly reduce glucose levels even without any change of diet. The main thing with immunotherapy is get into a good combo trial before you need chemo, so best to have something in mind and in your back pocket..
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Harry, I am so sorry for your loss and what a shock it was when things appeared to be going so well. Thank you for sharing Penny's story. I hope that time will bring you peace.
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Dear Harri, we are all with you, biggest condolences. I am lifted by your courage and kindness, and wise words full of love and compassion towards people you probably never met. Saulius
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Harry I'm so thankful that you wrote to us. We feel like a support group here and really need to know what's happening with our friends.
I'm sad for your loss. 💞
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Dee I'm so impressed with your post. Hoping for the best trial for you. I'm going to write down the information about the other two you mentioned because you have ESR1, like me. Maybe my MO will be interested. 💞
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Harry, I'm so sorry for your loss. Thank you for letting us know & reminding us how quickly things can change. Her pain is ended and now yours begins. Our hands are holding you from far away when the waves of grief hit.
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Question for those of you who have MRIs of your liver/abdomen as follow up on mets diagnosis-- I posted here a few days ago that my MO had gotten a preliminary report on my test last Friday (a full week ago). There was one very questionable new lesion (about 1.1cm) reported on that test. It was listed as "suspicious for metastasis," although its features are not the same as the 2cm+ lesion that I had blasted out via microwave ablation last summer. It resembles other very teeny lesions that are in my liver that one of my docs described as indeterminate. And it only appeared on one slide of the full study.
I still haven't gotten a final report, and even the imaging center doesn't have one. I did email my interventional radiologist yesterday afternoon, and still haven't heard back about his opinion. Of course, this is making me very anxious.
So -- my question: has anyone on here had definite liver mets and then, on a subsequent MRI scan, had something found that turned out NOT to be mets? I should also caveat that I have fatty liver, and I don't think my liver is the easiest to read on scans (have been told that by my doc.) And I should qualify that I research everything to death (which probably also explains my heightened anxiety.)
Thanks for any info out there that anyone can share.
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Hello! My name is Pamela and I was just dx last week for liver mets. I used BC.org a ton with my regular breast cancer 4 yrs ago but feeling lost on which forum is right for me this time around. Is this forum where I the best for liver mets? Thank you!
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Pamela- Hi. Welcome. Yes this Thread is good for Liver mets. If you have any other sites of mets-- lung, bone, brain -- we have Threads for those too. Also what treatment are you on? We have Threads for the meds too. This Thread is active.
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welcome pamela23
This is a good place to get info on all things liver and I notice you posted on the local treatments thread too. We are a great group here and can offer support and share our experience. Please feel free to share your questions, treatment options and concerns. We don’t give advice but we do care and share!
BevGen
My MO switched from CT to MRI because it was better to see/track the tiny liver spots. I have not had the situation you described. I hope you get some answers soon. Waiting is hard.
speaking of waiting, Sarah Cannon called today and said they needed more time to see about Trial openings, If I can qualify while on IVIG and scheduling. So I should here sometime Early next week about the trial. Meanwhile my labs are great.
Dee
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Hi Pamela, bummer you find yourself here but you're in the right place
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Pamela23: You have found a good home. We are all here for you. I am sorry though that you find yourself year, four years later.
moth: I was back reading old posts. I am glad I have a port. I get my blood test done at a LifeLab one block from where I live a day before I have my infusions. They just do the old inner elbow thing. They don't can't draw through the port. But it leaves my veins untouched from Chemo IV lines. I also don't have to wait for 2 hours until they have the results and can administer the chemo.
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what are the symptoms of liver mets?
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Aseye, you sound frightened. I assume you are worried that you have progressed to metastatic breast cancer, mets to liver.
For me, I had no symptoms. Found on CT scan looking for something else.
I would suggest that you contact your MO now so he/she can listen to your concerns and order appropriate tests/scans. You don't want to wait in case it is aggressive.
My hope for you..it is something not cancer related.0
