Best Of

Hello Everyone! My Sandra had her last scans two weeks ago and she's still NED! 8.5 years with treatments and doing very well. Just went to Italy for a holiday with her girl-friends:) Hugs, Saulius

@seeq - Hi, and thanks for your comments. They are always interesting and helpful. Yes, I did have a biopsy at the end of July and that's where the mutation was discovered. It took a month though for some of the results to show up and now I'm not sure if the mutation result came in early or late, but whatever (I could check MyChart, but too lazy.) Anyway, as you say it looks like I have a lot of options right now, but it's so overwhelming trying to sort them all out and make a decision. One and done would be wonderful, but from what I've read, that doesn't seem to be the way it usually goes. My understanding is that any of these options maybe kick things back for awhile, but that invariably the same tumors (and more) begin to grow again, so all you really get for a lot of pain and more is maybe some time. I think I read that the one year survival statistic for those who get Y-90 is only something like 46%. My onc told me that that's actually a good statistic! I think it might be because so many with liver mets have lots of mets elsewhere too. I also have mets to some of my bones only but it's relatively stable, so maybe that's a plus, since it isn't all over? I understand that histotripsy survival statistics are similar to those of the other treatments. So far, I'm just not seeing where all of this is particularly great. The histotripsy NP told me that the best they could do for me, after looking at my scans would be to "debulk", but not cure. I'll have to wait and see what their surgeon says. Have your liver mets remained under control with just the drugs? That's wonderful if that's the case and I hope that keeps going for you for a long, long time.

@seeq - I'm sending a belated response and thank you for your previously asking about how my appointment had gone last month. (I've just been so, so tired that it's been hard for me to keep up with others posts, plus I don't have the energy to do much posting about my own situation either.) My appointment went OK and he told me that my options would be to continue with the Verzenio/Fulvestrant and get local treatment for the liver mets, or to try switching to something like Truqap or possibly Enhertu (I don't want to do that). Truqap is apparently the drug of choice for the AKT1 mutation that they found in my liver mets. It doesn't look like a "good" mutation at all, as it apparently makes the cancer cells more aggressive. I haven't read where anyone has done especially well on Truqap however, not at all as well as people seem to do with the CDK4/6 drugs and an AI. The oncologist did say that the pace of growth is very slow and that that is a "good" thing and gives us more time to make plans. My scans in September showed relative stability, so we decided to continue to watch and wait and see what the December scans show. In the meantime we will watch monthly tumor markers and I will consult with other doctors re the local treatment options.

As of now, I am going to see a liver surgeon at my main clinic/hospital in early November to discuss the situation and local treatment possibilities. (So far the onc and IR have been seeming to lean toward Y-90.) It's my understanding that the liver surgeon would be required or involved in other types of treatment like thermal ablation and more. I just don't really understand it all, so am glad to be getting this consultation. Then in late November I will be getting a consultation at another local hospital that does the histotripsy treatment. I'm hoping that with all these consultations I will be able to weigh all the options and make a wise choice about what to do. The problem is that with this liver mets development all of the options just put me one or more steps further down that road none of us want to take, and I just can't seem to get past that. I just wish I could keep chugging along with the CDK4/6 and fulvestrant for several more years - it does look like some manage that, although obviously most don't. I'm just so burnt out from all of this.

Well, I haven't been walking quite as much. My feet got real sore and I'm not sure if the walking played a role. I also have an issue with my feet not being quite long enough to hit the floor when I sit at the computer, so I was using a box as a footrest. Well after doing that day in and day out, my ankles and feet got extremely sore. Then the storm we just had started coming in and I think the barometric pressure changes, etc. added to it all, and I was just too sore to walk. Well, I broke down and ordered a "real" footstool from Amazon and got almost immediate relief when I started using it. It puts your feet in a whole different position than a cardboard box does. After using it for a couple of days I felt like I could try walking again, so went over the last two days on smaller, "easier" walks, and will go out again for awhile this afternoon. The weather has improved also. I really want to get back to my more extensive and "challenging" walk, where I go up some inclines and manage some different terrains; not just flat. I want a get back to going a bit farther too. All in all, things are better and looking like they will continue to improve, so I'm feeling good about it all right now.

@cookie54 Hi Andrea! Thank you for your good wishes, as ever. The game (and your own suite too!) should be a welcome break from your recent difficulties. Enjoy.

@rlschaller Rhonda, hope that you are doing well on your new treatment.

It's a beautiful sunny day here, and a quiet weekend. The best kind.