How are people with liver mets doing?
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Well …I failed the trial I think most of you know from the Clinical Trial thread. I am going to the NIH to consult on Tuesday but not counting on anything coming from it they made it clear that people go through the whole process and then can be elminiated at last minute. Couple of things you all should know about the CAR-T trail there:
- Breast Cancer is the worst to work with …and once they extract your cells and work on them, for breast cancer it takes 4-6 months to work on them.!!!! I will probably be dead by that point and even if I am not…you CANNOT have progression during that time.
2. You can be on treatment during those 4-6 months
3. You must have a fully rescetable tumor in an area they want and it must be the KIND of tumor they want.
Even if I make through to have the surgery I am fairly certain that I wont make it past there bc 1. I will progress and 2. I have Low Mutational Burden.
My oncologist wants to go to Enhertu next… **sigh. I am not that thrilled bc honestly I don't think I am going to have success on anything at this point. I think I am too heavily pre-treated and what is happening is my cancer sees a new treatment and initially responds and then literally, 2 weeks later stops. I am considering after this just giving up.
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This update is confusing as heck. I can't find what I'm lookning for. Also, I strongly disagree with allowing people to rate a post by liking it, or whatever feedback they permit. I think it will lead to hurt feelings.
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I completely agree about the rating buttons. Both "Dislike" and "Agree", but most certainly "Dislike". This sets up petty competition, and would appear to allow for an anonymous, drive-by ratings. We come to this website to offer or request informational or emotional support. We pour out our hearts and share personal information regarding a serious health condition. This kind of communication should not be made light of.
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Perky2020 - I just posted my Travera experience in the Travera thread. They weren't able to do the testing. :(
My daughter is doing well - she is almost 7! :)
I have no idea about your other questions. I'm not sure if there is enough trial data to really know the answers to those questions. You may want to ask your doctor.
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Dear Mods, I am also very happy to be here back. We'll get used to new front-end, and I think the most important thing is that we can all be here connected because of the immense work that you do.
Dear Nicole, which trial do you consider at NIH? What about the TIL trial at NCI, is it completely off the table?
Saulius
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Aww, we appreciate you saying that, @bsandra! :)
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Saulius I am here now at the NIH for the TIL trial... I have to say it's very very risky for not a big return...sigh... We have been here since 6am and it's 3pm and still haven't met with the team.
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Hello, my name is Lindsey and I am Cassandra ("Sandi") Jones Garrison's daughter. I don't know if you remember her but she was active in your community a few years ago. I was going through my mom's belongings and came across a note with instructions and a request to send a message to you all informing you of her passing, as well as a copy of her obituary. Unfortunately, my mom succumbed to her cancer somewhat suddenly exactly a year ago today (5/2/22) so I am sorry for the delay in my response as I have only just found her message. I remember her speaking a lot about her community, and how much comfort it gave her to be able to have conversations with people who were going through the same/similar thing. Something she could never really have with everyone else as much as we tried to empathize. In her words in the note she left behind, "These are my online support friends and mean a lot to me". I am sorry for bringing sad news to those who knew her- I know that each of you are going through your own personal hell. Thank you all for giving my mom support and comfort in her final days- it means the world to me and to my family. Sending you all so much love.
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Lindsey, you have my condolences on the loss of your mother. Even tho her passing happened a year ago, it means a great deal to us to know so your post is greatly appreciated. And I very much appreciate the link to her obituary. It is so well written and expressive about the kind of person Sandi was, and it sounds like she lived a full live even as she dealt with mbc. Thank you for honoring your mother’s wishes by getting in touch with us. Sending many hugs your way.
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LIndsey - thank you so much for coming back to tell us. I am so sorry for your loss. Your mother was a special woman and her presence here helped me when I was first diagnosed.
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wow Sandi beach I really miss her!!! So sorry for your loss thank you for letting us know.
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Dear Lindsey, yes, we knew your mother and felt that something has happened as she was really active in these threads (in several). My biggest condolences on the loss of your mother. Every loss in this community is loss of part of our hearts… and part of our life. HUgs,
Saulius
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Lindsey, sorry for your loss.
Sandi Beach was someone who’s posts I followed regularly when I first joined. She gave me hope and courage as I started the MBC journey.
Thank you for sharing her obit and letting us know about her passing.
Sending you and your family my condolences and hugs
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Lindsey, thank you for letting us know about your mothers death. I send my condolences to you and your family.
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Lindsey, I am very sorry to hear of the loss of your mom, and will miss her contributions to this forum.
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Lindsey, thank you for reaching out to the community. It means so much to us to know when we lose someone. My thoughts and prayers are with you and your family.
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Dear Lindsey, I am not a frequent poster, but I read everything about liver Mets since that’s my diagnosis. I remember your mom’s posts. She was so often uplifting and comforting to us all. Thank you so much for letting us know about her passing. My heart goes out to you and your whole family with deepest sympathy.
Kate from Alabama0 -
Progression in my liver mets mean the end of Enhertu and 8 weeks of Epirubicin. I will be having a liver bi opsy. Any suggestions regarding the biopsy gratefully received. Thanks
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Denny10 - I’ve had 2 punch liver biopsies this year for a clinical trial. I was in deep twilight for both. Minor tenderness afterwards. Pretty easy. For me, the thought of the procedure was way worse than the procedure itself. I hope yours is just as easy.
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Denny10,
I had a liver biopsy last Aug. Like rk2020 I was given twilight anesthesia, so could hear conversations, but had no pain. Ultrasound guidance was used to locate the tumor which was about 1.0 cm. It took about 5 pokes until they got enough tissue to send for genomic testing. Ended up with a bruise afterwards. I didn't know about the Travera test at the time, but from what I've learned since I think it would be worth inquiring about. If you call the company their Rep will call you back with details. They work with your doctor. I think Travera needs more tissue for their test.
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I had a liver biopsy and it was easy. Twilight sedation and a bit of pain afterwards but they gave me some oxy.
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I am so sorry to hear of your progression Denny10. I am just starting Enhertu. I had a liver biopsy in April and I agree with what everyone is saying. It was an easy procedure and easy recovery for me. I worried more than I needed to. Some mild tenderness and a little twang in my shoulder after. I don’t think I even took Tylenol or ibuprofen. I had to lay still for 4 hours after. I was tired from the twilight so that wasn’t a problem. I just couldn’t go to the bathroom in the bed pan. I think a little performance anxiety. But overall it was a pretty easy experience for me. I can’t say the same about Enhertu. Praying Epirubicin takes care of your liver Mets.
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Thanks for all your comments and reassurance . I am in the UK , no Travera here as far as I know.
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Dear Nicole, how are you? Any news from TIL trial or is it too early?
Saulius
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Denny I posted all about Travera for you in the Enhertu thread.
Saulius…I wont be hearing anything for several weeks they said…they have to grow the Tcells or see if they grow and then grow something with the Aphreis cells they took….
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Dear Nicole, yes, I know it will last but I thought they are in touch with you about how things go. Sorry I asked. Good luck and hugs,
Saulius
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Saulius my dear friend why did you say "sorry I asked"???
I wasnt upset at all that asked :)
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Thanks to all who gave me reassurance about having a liver biopsy. I had mine today. Oral painkillers before the procedure and then local anaesthetic. Prepping for it took longer than the biopsy. I have more oral painkillers on standby, but havn't needed them so far. Now the wait for the results.
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Dear Nicole, hey, I know you were not upset - it is probably more of a direct translation and way to address things in my language:) I sometimes hate the silence in these forums, and hearing from you all is such a blessing, all ups and downs. We have never met but I am so connected to you all that when no one is writing here I start to think something bad happens:/ And I don't have any social networks (I made this decision long long time ago, except for linkedin), so this is my "facebook", you know:))P Hugs,
Saulius
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