How are people with liver mets doing?

@candy-678

Sending healing thoughts and virtual hugs your way!💞

@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!

@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.

thank you to all. I will post update after one month when the follow up scans should be done

so great to hear about new advancements, especially for those of us that live in relatively rural areas of the states. Thank you, Kate

@ailurophile I was dxd Stage IV de novo in 2016 and have been HER2- for the past ten years with little change although it was always low numbers. My first treatment was Ibrance/letrozole which worked well for four years. After two more years of various drugs (you can check my signature) I took Everolimus five years ago and ended up in the hospital because of low tolerance and ended up contracting pneumonitis which we believe was caused by an allergic reaction to the Everolimus although it can't be proven. So we may have similar histories although I have never had an ablation. I went on IV chemo in January because I am now endocrine resistant. I am 73 years old and have decided that Quality of Life is more important than longevity. So I am on a low dosage of Taxol (the only IV chemo I have ever had) and we are watching me closely. I have been doing pretty well since starting chemo and my tumors are quiet except for a few in the liver which have shurunk and/or disappeared, and my tumor markers are down so it is working. Because I have been in chemo treatment of some sort for over ten years my body is wearing out and my good days are few. But so far they outweigh my decision to stop treatment. Hope this helps.

@ailurophile Thanks for posting, I'm a year ahead of you and it gets very unclear this far out what to do, so its great you are at UCLA and have access to trials. So, although you say you are endocrine resistant, you just got almost a year on just Orserdu monotherapy, which indicates endocrine-sensitive still, so can you comment more on the biomarkers?

I just finished a trial at MDA for PIK3CA mutation, and was allowed to stay on Orserdu for that trial because the cancer has both ESR1 and PIK3CA mutations. Despite liver mets, the cancer responded for 16 mos, and because only a couple liver mets progressed local therapy is also on my short list. I was interested that the main recommendation from the MO was to stay on ET, and so I'm trying Orserdu +Verzenio, which many would consider unlikely to work, but its been 2 years since I was on it, and I responded well to it previously. But if not effective, the suggestion was try KAT6 trial or CDK2 or any other ET combo. If I can get something to work and stay off of a PIK3CA drugs for a year or so, then maybe I can cycle back to take one of the drugs in the future. Anyway, when I took Verzenio before, it was with Faslodex, and the liver mets had not seen that combo, so perhaps that will work esp if I can treat the liver mets that are responsible for the progression. You did so well on Verzenio, and its been 2 years just like me, so you might consider going back on that, either with Orserdu or better still with one of the new SERDs like Imlunestrant, which are all supposedly stronger than Orserdu. Importantly, Verzenio can also strongly reinforce endocrine sensitivity, so might keep the cancer from mutating to a more aggressive pathway(s.)

It would help if you listed the main mutations from genomic testing or liver biopsy.

One thing that could also be a game-changer is go for additional newer testing for biomarkers, for example Darwin Onco Target is one of the newer mRNA tests, these tests they look at a large number of genes to see if there is very high (or low) expression, which can also be driving the cancer (its not just gene mutations, that do this!) and can give a much clearer picture of what is causing the current cancer growth. It can reveal new biomarker information and suggestion the best direction for treatment. For example, one of the most common pathways that get activated is the PIK3CA/AKT/mTOR pathway, which can be turned on by a PIK3CA mutation but there are many other ways to turn on that pathway, including over-expressing the proteins rather than mutating them. Regardless of whether the test identifies this or a different pathway that has now been turned on, it will validate the kinds of therapies you might want to look at.

Also, as is discussed in posts above, histotripsy and other targeted therapies in the liver are important add-ons to our therapy, and can be used repeatedly to clear out or reduce the size problematic liver mets. Tumors smaller than 3cm can be destroyed completely with histotripsy, and larger ones can be partially ablated or hit multiple times. But also histotripsy can give rise to a personalized cancer vaccine because it does not destroy the werido neoantigens the way other treatments can, so it can be done in combination with immunotherapy or chemotherapy to try to turn "cold" tumors "hot" and cause shrinkage of other liver mets that were not treated.. You might even consult Dr Kevin Burns (Mission Viejo Providence) about adding histotripsy to the paclitaxel you are taking right now, just as Maaki did in the above discussion; you could do this during a week off and it would not affect your treatment schedule. Apparently these guys are very fast in scheduling and its a one-day non-invasive procedure with minimal side effects.

It could be good to get off the paclitaxel before a major progression, for example if you took histotripsy and it helped the response, just to try to get back into the endocrine therapy loop before the cancer mutates in any more aggressive way. I posted a paper of a woman w/ten liver mets who had two histotripsy sessions of five tumors, and it cleared everything out in scans, even tho she was on chemo, not immunotherapy. Not every tumor is accessible, but they can be partially ablated, so 3cm is NOT an upper limit, and it can be repeated or combined with Y90 if need be. For purposes of immunotherapy, you don't care if they get all of the tumor, just opening up a met can allow your immune system can learn what neoantigen proteins are markers of your cancer that they should be hunting. So, the idea is to "use the tumor" (to make a personalized vaccine of sorts) before you "lose the tumor". Anyway, these are some ideas for your discussion w/MO…

Oh, that's what happens when you try to respond at midnight, aack, I was mixing your history up with IntoLight's post, sorry about that! It's easier to respond if you post a current list of known mutations in the cancer along with the sequence and durations of your prior treatments. But overall, yeah, I'm glad to know Everolimus sucks and will try to avoid it.

My main suggestions remain similar: 1) I don't know if DarwinOncoTarget is in the clinic now or just in trials, but it could be super helpful as a way to get a more complete reading of what is driving the cancer; 2) Try to get on a new oral SERD instead of Fulvestrant. I know one has to have an ESR1 mutation, but those SERDs do work as well as Fulvestrant, just not significantly better, which is why pharmas have not asked FDA to approve them for ER-normal, but that is changing as some of the newer ones sound like they can indeed show superiority to Fulvestrant and will apply to FDA to treat everybody; 3) Depending on how long you have been off of Verzenio (hopefully more than a year) maybe try to get back to that, at least as a test to learn if you are truly resistant or not- so some kind of SERD plus Verzenio. If new oral SERDs are not available, you can go off label with the androgen agonist Ostarine (MK-2866), which is available on the internet, it did well in phase 1-2 trials but then the company pulled out of breast cancer to use it as a way to prevent muscle loss for people taking the GLP-1 drugs for weight loss (it is a body building drug)- I added it to Faslodex (when that was failing for me )and got 8 months on that it fixed the scans, with added benefit to overall fitness; 4) Put histotripsy on the list for future, is outstanding at Mission Viejo, which is not far from you, and I think the field is moving to where it may be part of systemic lines in future. Plus once you are signed up in their system, you can quickly get in there in case of any problems down the road; or if you want to try it with immunotherapy or Ehertu later on. 5) in terms of clinical trials, probably they will suggest the Kat6, which has good PFS, and sounds like the only problem is mostly the drug makes foods taste metallic, but it does work well and is given w/Faslodex, and should be better than Everolimus, I would do that and then maybe some new Verzenio-ET combo will work afterwards.

And you are doing amazing!!!

https://www.pathology.columbia.edu/diagnostic-specialties/personalized-genomic-medicine/oncology-testing/darwin-oncotarget-tm-oncotreat