How are people with liver mets doing?
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Sending healing thoughts and virtual hugs your way!💞
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Has anyone heard from @threetree ? Her last post was on 3/23 and she mentioned that she was having tech problems, but she is usually an active poster. I believe that she also lives alone and I'm concerned for her.
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@eleanora - Eleanora, thank you so very much for thinking of me. I really appreciate it and actually started crying when I read your post this morning. I'm here, and I'm OK, but I've been having a lot of ups and downs. Sadly, I haven't been able to follow along and keep up with everyone, but I hope to get back to it in the not too distant future. Yes, I have an ongoing tech problem that I just haven't had the energy to pursue, so can only type on my phone right now. My computer keyboard remains unconnected to the monitor, so not really able to use it, and it's difficult and tedious for me to type on my phone.
I started Xeloda in the middle of January and it causes a lot of both physical and mental fatigue, and that is some of the reason I've been absent. Then I got RSV for pretty much the whole month of April, and that just added to all the fatigue and my inability to stay up with everyone. I was just starting to get some energy back and feel better a couple of days ago, but then yesterday I had a setback with some kind of post viral (I think) ailment that causes terrible nausea, lightheadedness, dizziness, brain fog, and fatigue. I've gotten better as the day has worn on, so I'm hopeful.
Finally for the good news: The Xeloda has brought my tumor markers down dramatically and they are now back in the normal range. I had scans in mid April and it was reported that bone lesions are healing, and none of the 10 spots in my liver were visible! My oncologist says this is a "big deal" and both he and the palliative care nurse couldn't understand why I wasn't just jumping for joy and celebrating. I told them that I think the fatigue from the RsV and the Xeloda, kind of buried the joyI did feel with all of this. The happiness is there, but I just feel too tired to really express it much. I'm also wary, because we just never know how long these occasional positives will last. The oncologist told me that it was his medical advice that I do something big to celebrate, but that hasn't happened yet.
I do think about everybody here and wish I could just keep up like I used to. Fingers crossed 🤞 in that regard. I just want to say hi to all, and a very Happy Mother's Day to all the mothers on this board!
Eleanora, once again, I can't thank you enough for your thoughtfulness and concern. Sending hugs to you!
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It's early Saturday morning here on the east coast and I have tears in my eyes and a big smile on my face as I'm reading your post. Totally understand the overwhelming fatigue and nausea (I'm currently having iron infusions and B12 injections for the fatigue and Zofran is my friend for the nausea). Quite a few people have Ritalin prescriptions to use as needed to combat fatigue, but I haven't tried that yet. I hate typing on phones as well, so purchased a lightweight laptop about 6 months ago and I'm sitting in my favorite chair with the laptop on a pillow on my lap, drinking coffee and "talking" to you.
I'm over the moon with joy for you at the Xeloda results and I completely agree with the oncologist's advice to do something big to celebrate. We must make the most of our victories so that we have those memories to cushion us through the defeats we know will come. I've had some ups and downs the past few months which I'll tell you about another time, and at the end of my most recent MO Zoom appointment, she smiled at me and said "go book a trip".
If you'd like a trip that accommodates the variability of your condition, I highly recommend a cruise. I've taken three in the last few years and they are the most relaxing, least demanding form of travel that I've found. You might be surprised at the number of walkers and wheelchairs among your fellow passengers.! Viking has small ships with no children and no casinos, and I prefer that atmosphere. If that sounds too exhausting, just pick a city a reasonable distance from you, check out the upcoming activities (theater, concerts, art shows) and book yourself a nice hotel room. If energy permits, you'll have new scenery to walk through, and if fatigue is an issue, sit in the lobby or on a terrace and watch all the new people walk by. Perhaps the friend who has been so steadfast in accompanying you to the fulvestrant injections would like to join you.
Will sign off before I exhaust you by reading this. Please check in periodically, even if only with a short post. You have been missed. ❤️
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Hi I would like to thank to this community, that it exists. I have learned so much and with Cure-ious we were exchanging info and the newest research data on BC since 2020. I wrote here about my latest progression on liver since this winter after 8 liver clear years. And Cure-ious send me info about histotripsy. I thought it can not be done for multiple mets, but Dr. Burns in Mission Viejo did 5 tumours this monday. It is early to see the results but I have 5 cavities hopefully the mts are dead. And as a bonus I got to meet the most knowledgeable MBC patient Cure-ious. We had a great time talking and having lunch. I traveled across half globe from Slovakia to California. And thanks to this community.
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maaaki I am so thrilled that you got the histotripsy treatment and I do hope that is works really well.
What a bonus to spend time with the wonderful cure-ious. Lovely picture and great to see you both looking so well.3 -
@maaaki - What a great story! So glad to hear about the histotripsy. Fingers crossed that it did the job, and you will have many more clear years. And you are so lucky to have met @cure-ious . She is always so helpful and nice. I just love the photo and the whole story. Please let us know from time to time how things are going.
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So glad you've had a very positive experience with histotripsy. There have been comments posted here with both supportive and negative opinions about it, and it's wonderful that you found a doctor with such talent. The photo of you with @cure-ious, our resident kind and generous expert, is a joyful thing to see. Hoping that you have lots of reasons to smile in the future.
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thank you to all. I will post update after one month when the follow up scans should be done
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Maaki was treated by Dr Kevin Burns (Mission Viejo, CA), one of the top practioners of histotripsy in the country.
A recent paper from his group presented a case report of a 30y/o woman diagnosed with ER-positive MBC in 2016. Initial mets were in the lung and bone, but she eventually developed liver mets in Jan 2023, along with ESR1 and PIK3CA mutations in the cancer, and was treated with Capivasertib/ Fulvestrant, then Orserdu/Verzenio. She then moved to Enhertu and they were able to treat ten liver mets by histotripsy in two separate sessions, carried out six weeks apart, in April-May last year. She remained on Enhertu and scans in August and then Dec 2025 showed a complete metabolic response, which is just amazing… all her liver mets had cleared out!
It is likely that the histotripsy generated an abscopal effect in this case (ie, shrinking of tumors that were not directly treated, due to access the immune system had to the cancer), given that not every bit of each tumor would be accessible to histotripsy, however it is not possible to know whether or not that happened, because the patient was also taking Enhertu, which would contribute to the tumor shrinking. the result is nevertheless remarkable, in part because ER-positive tumors are considered immunologically "cold" and therefore unlikely to respond well to the immune system, and also because the patient was not taking immunotherapy/ Keytruda.
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