How are people with liver mets doing?

Tnx on yours kind wishes, i really hope that this new medicines will work on me, i agree that today there is more positive outcomes than negative, but i cant help myself to think dark.

I wish you all the best with no new progressions ever again💓

@needpositive - Hi, I am totally "spitballing" as they say here, but I'm wondering if a consultation with a liver surgeon might not help. I had what were initially described as about 3 lesions on my liver and went to see the surgeons regarding the possibilities of ablation and/or histotripsy treatments. Turned out both of those surgeons separately and independently counted 10 lesions - not anything that the radiologists doing the scans or my onc had appeared to have noticed. You might want to get a better idea of just how many lesions you actually had/have. They decided I was not a good candidate for ablation or histotripsy, but then the Xeloda I was put on has been effective so far and the lesions cannot be seen on CT.

That said, it is my understanding that just because they can't be seen doesn't mean that there aren't microscopic cells still left that could start to grow again - especially if you were to stop treatment for some reason. In addition to getting an accurate count of just how many lesions are involved, liver surgeons might also have a better perspective re just what the color changes and more actually indicate re your status. I found the consultations very, very helpful. My consultations did happen before the Xeloda and the lesions disappeared, but I would think that their knowledge and input would still be quite valuable even now. They just look at it all a little differently than our oncologists do, and it adds to the knowledge base and perspective.

On another note, I am very happy to read that your situation has improved so much and that the lesions might be "dead". The tumor marker changes you've had are awesome and I hope the Phesgo serves you well for a very, very, very long time. Congratulations and good wishes!

I can share my experience with a de novo ER/PR- HER2+ metastatic breast cancer diagnosis in November 2024.

Initially CT showed one liver tumor 1cm x 1cm. Liver MRI found two (the 1cm x1cm and a 1.8cm x 1cm).

I started THP Jan 2025 and finished the weekly paclitaxol end of March 2025 and continued on maintenance herceptin and Perjeta. I switched to Phesgo in January 2026.

My liver MRI following chemotherapy in April 2025 showed the 1.8cm x 1cm shrunk to 0.7cm x 0.6cm and the 1cm x 1cm was gone.

MRI done every 3 months and now 4 months have remained the same. Petscans done every 3 months and now every 4 months have had no metabolic activity over baseline SUV.

It is believed that the remaining visible 0.7cm x 0.6cm is a scar, as it has remained stable in size and without increased metabolic activity on petscan.

My onc will keep me on phesgo as I tolerate it well and am in a stable status. We are going to do brain MRI every 6 months as surveillance with a plan to switch to enhurtu if anything gets around the phesgo protection. I am independently looking into a dna vaccine trial as an added layer of protection.

I view this as a fight to remain stable, live a long and joyful life, and look to increase survival time with the advancements being made in treatments. I pray we all will have good outcomes and longevity as we navigate our way through what I am sure none of us wanted!

P.S. it is so encouraging to me when others share their stories of achieving years and even decades beyond initial diagnosis and what other treatments are working for them…thank you:)

I don’t know about timelines as far as phesgo. I think the thought is they typically want to give it an opportunity to work and then follow with imaging to see how effective it is at shrinking and/or stabilizing. At one point in my initial treatment we discussed ablation but later decided it was not necessary since the liver had responded to chemo and the maintenance was holding to what appears to be a scar. My onc not concerned with a scar. I would take the approach where you use both MRI and petscan to evaluate your response since MRI can look at structure and size where as petscan evaluates the metabolic activity. So like in my case where the petscan is clear even though there is a small 0.7cm scar that remains. Our discussions have been if there was any progression then enhurtu would become the next line of defense not necessarily any liver intervention.

@needpositive I had one brain MRI a year ago because I had some new ear ringing. The MRI was clear. I think because I am reaching a steady state and because as you know phesgo does not cross the blood brain barrier as enhurtu does, monitoring will allow for early detection and a switch to enhurtu if necessary.

@needpositive I pray for us all fighting this disease.
I am sure you know Phesgo can cause Congestive Heart Failure and other heart issues thus why an ECHO is necessary every 3 months. I would recommend good cardio like walking or more if you can to keep your heart healthy…and this can even improve your ejection fraction to keep it in a normal range! I cut out all red meat and pork and watched for added sugars to lower sugar consumption. Of course , no alcohol. If you do an internet search you can find recommended foods to eat and those to avoid for those w/ HER2+ breast cancer. I also keep positive thoughts and use daily prayer.

@nanalisab @threetree

I am aware of the harmful effects of Phesgo on the heart, but I also see more people writing that they have no symptoms than those who do. I actually asked my doctors about doing some cardio training, and they told me to let my body recover from chemotherapy (wich i stopped last week) for a while before starting; I even bought a small home trampoline. I live in the Mediterranean and it is currently 40 degrees here. We also have the sea, but I don't like going because I feel ugly until my hair recovers.

However, I definitely plan to start some training in the autumn, plus long walks. I also have two small children, so resting is impossible with them anyway. But yes, I became very lazy during chemotherapy.

As for my diet, I am on a plant-based diet, without any fats and sugars, using minimal olive oil and raw honey, and I also drink cold-pressed juices. Sometimes I think everything helps, and sometimes that it's all in vain.