How are people with liver mets doing?
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I have previously posted under the topic of feeling like an imposter (I don't feel that way any more)… but had to jump over here to share that my latest PET scan results just came back - after progression on Kisqali/Fulvestrant (after 3 rounds) and Doxil (3 rounds) - and having CA15-3 levels over 1500 in December when I started Enhertu, after 9 rounds of Enhertu, there is "no evidence of local tumor recurrence or active metastases." I am shouting from the rooftops!
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@vermonster I hear your shouts here in Colorado. Hooray! Congratulations on this amazing scan. We love hearing good news.
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Thank you, Intolight!
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That is great news @vermonster ! I hope it continues for a long time. How has Enhertu been treating you besides killing off the stupid C buggers?
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Hi Dulcea - Enhertu is not as bad as Doxil was (I had an allergic reaction and needed a lot of pre-meds, got hand-foot syndrome, and was tired all the time). That being said, I am definitely looking forward to when I'm approved for infusions four weeks apart (likely September if all goes well). I tend to constipation, which gets worse with the pre-meds and the compazine. I am exhausted for a week, then mildly tired most of the time for a week and then feel pretty good for a week and get to start all over again. I sleep pretty well at night and my appetite is good (I've gained 5 pounds). I find myself less tolerant of being too warm (makes working in the garden already difficult and it's barely into June). But I know it could be much much worse and right now, it's all very much worth it.
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Dear @vermonster ,
Uau, what news! You certainly deserve a celebration! Many hugs and keep us posted - as you are her2equivocal, it is really so important for others to see that her2 ADC options can help her2- people! This is amazing and I am very happy for you. Hugs,
Saulius
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Thanks for the info. I find it very comforting. In my experience, the doctors have been very willing to share bad news and negative possibilities, but not anything positive, such as what you said about the cysts. I am grateful that Kisqali/fulvestrant has succeeded for 3 years but also increasingly anxious that this means the probability of it failing increases with each month.
I try to focus each day on doing something positive within my energy levels that day, even if it's only reading a book or working on a knitting project.
Look forward to hearing about it your progress and hope it's wonderful positive!
Eleanora
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Hooray for Enhertu! You stopped that beast in it's tracks. Hope you have a long run. So happy for you!
Eleanora
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I meant to post yesterday, on my FIVE YEAR cancerversary! Still on my first line treatment of Verzenio/anastrozole. Five years ago, I had no thoughts that I'd make it this long.
@threetree -I know what you mean - when I hit 24 months, I was waiting for the other shoe to drop. Now, I'm just trying to coast.
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Eleanora - So glad that what I had to say was of some help to you. I totally know what you mean about being so happy that a drug regimen works for a good length of time, but how it also means it's closer to failing and needing to move on to something else. It's a real double-edged sword.
Seeq - Five years on Verzenio and Anastrazole - congratulations! I'd love to get 5 years on this Verzenio. I'm only at the 2 year mark so far. It's so nice that you are doing so well, given your initial diagnosis. Keep on coasting for a long, long time!
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Seeq, congratulations on your five-year V/A treatment mark. That is amazing! I got 2 1/2 years on it and thought that was good! I am on my fourth month with Orserdu and still plugging along. I will tell you this drug is easier than Verzenio. I hope it works as well.
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Well, the scans I got yesterday noted an increased size in 2 of the "multiple" lesions (mets) they say I have had that have been kinda/sorta growing for a year now. I think I will just have to get that biopsy now. I have a follow-up with the onc next week for more clarification, planning, etc., but I think that's the deal. I really want to learn more about the Histotripsy option as it is non-invasive, whereas the Y-90 involves those incisions in your groin and more - stuff that really scares me.
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@seeq how did I miss your anniversary?! That is great news! Keep it up!
@threetree Sorry to hear about your scans. Stay strong and do your research. You've got this!
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After developing neutropenic fever following my 1st dose of eribulin=Halaven in early April, I was off treatment for a month in order to let that resolve. Resuming at a lower dose, I got a few cycles under my belt (so to speak!) and then had an MRI that showed no new liver tumors.
Also, existing lesions were reduced in size. I feel those results have given me a summer respite from changing to my final chemo which will be vinorelbine/Navalbine. My CA 15-3 is lower too. I do have less energy but my hair is very slowly growing back.
I’m getting a little yard work done and we managed to visit our son & daughter-in-law in a neighboring state. They’ve been in their newly constructed house since January, having sold a condo in Chicago.
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Histotripsy: I created a new topic for this also, but thought I would cross post, since this is the liver mets thread:
I am in the process of learning about histotripsy for possible liver mets treatment. My oncologist has told me something about the process, and I've read quite a bit also. It is not yet offered at all cancer centers (mine included), so it's sometimes necessary to go to a different clinic for the procedure. Has anybody here had any experience with this treatment? Have you had it yourself or do you know anyone else who has? I'm trying to gather as much information as I can, as I weigh my own options here for liver mets treatment. It is a new procedure and considered experimental in many ways. They are still gathering data and trying to decide who the best candidates for the procedure might be. It appears to do something of what ablation and Y-90 type treatments do, but it destroys the cancer cells with sound waves, so usually non-invasive. Like the other treatments, this too is not a cure, but something to knock the cancer back a bit. I would appreciate hearing about anyone's thoughts or experiences regarding this new treatment. Thanks much!
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Getting that dreaded liver biopsy tomorrow. Trying to think about the more relatively positive experiences some of you have described previously in this thread and hoping for same. Also dreading that once this is done, my oncologist will move on to the discussions of how to treat what's there. None of those options like Y-90, thermal ablation, or histotripsy type things sound like anything I want to go through either. I've just been coasting on this Verzenio, Fulvestrant, and Zometa for a little over two years now, and am pretty freaky that the apple cart has been disturbed. I want to just keep chugging along like I have been for the next few years at least, as some have been able to do, but it looks like that's not in the cards for me.
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@threetree , I hope it all goes well with the biopsy. I’ll be thinking of you.
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@threetree Hoping it all goes smoothly for you. Hang in there!
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@threetree thinking of you. Let us know how the biopsy went today. Now, the waiting..
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@threetree
Sorry I didn't read your message in time to wish you luck, but hope it was a relatively easy procedure and that you are now resting comfortably. In your pocket for the best possible results.
Eleanora
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Hi All - Well, I got through the biopsy, but it was definitely uncomfortable and not anything I'd want to do again. I started out when my friend came to pick me up and we discovered that the traffic was absolutely horrible, so we had a slow crawl most all the way, and what should have been a smooth maybe 40 minute drive turned out to be an hour and one half. I had to call them a short while into the trip to tell them I'd be late. I didn't know why they never mentioned all the construction when I made the appointment, because it's on a real standard route to the facility. We ran into non-working traffic lights, and then a ton of construction that was all happening on the usually very simple and basic route we took. I had a very nice nurse and the IR was also very nice, calm, cool, and collected. I certainly can't complain about the staff in that regard. Also, I had the procedure done in a virtually brand new building at the cancer center here. They've only been seeing patients there now for about 2 years. All shiny and bright it was😊.
They started out planning to use ultrasound to guide the procedure, but once they got me all tucked in and ready for all the ultra sound procedures, the doctor decided he couldn't see the lesions real well, and they switched me to the CT machine. They had to undo all the original prep they did and have me transfer to another bed. Then they had to do all sorts of prepping all over again. Then they gave me the conscious sedation and some lidocaine, that I felt going in with a real sting. I knew about the lidocaine sting ahead of time and was prepared for it, but still was bothered by it. The next part everyone told me was pretty quick and not particularly painful, i.e. when they put the needle in and extracted the sample (NOT). I'm not sure if I actually felt that needle go in, but I sure did feel things once they started moving it around. He took several samples - the nurse thought at least 3, and I think it might have been as many as 5. Each time he actually took a sample I would feel very uncomfortable pressure that sometimes made me want to get up and get out of there as fast as I could; wanted to just crawl off the table and run. I would also hear some sort of a grinding and crunching sound that went with it all, and I have to say that was not anything I'd want to do again or wish on anyone else.
Afterward, the recovery room stuff was pretty straightforward, and I didn't have any real bad pain or anything. Thank goodness there were no complications and I rested up for a couple of hours, had a snack, and then my friend drove me home, where I remained really tired (to be expected) and did basically nothing the rest of the day. When I got up this morning I did notice quite a sore belly and it has only improved slightly. I'm sure it's from all the poking and prodding, including with the ultra sound probe initially; no severe pain or signs of infection or bleeding. I'm not as tired either and might go for a short walk when I'm done posting this. I had a good breakfast, it's nice outside, and I've had no complications whatsoever; just routine after the fact soreness, so all in all I think I did well, as did the staff. And as @seeq says, "Now the waiting." I did get a MyChart message about an hour ago, but it was just a description of the procedure that the dr wrote. I don't know how long it will take to get the pathology results back.
Thanks to so many of you who sent me good wishes about all this. They really helped and mean a lot!
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@threetree So happy things went well for you with your biopsy. I certainly did not feel all the prodding you felt—I was out for all of it—but I'm thankful you are doing so well post-op. That is a big win! I will continue to pray for good results.
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@intolight - Thank you so much! I've thought about you quite a bit through this ordeal, because of what you went through with yours. I felt so bad about your pain and inability to keep things down there for a few days - ugh! I am so glad that I don't have bad pain like that, and I can eat. I'm being a little more careful with what I eat - not super rich or spicy stuff and not as much; no real large meals, because I do feel pressure on the biopsy area from inside, with just my stomach being a little full. This totally works out though and it's not a hardship in any way. Just went for a small walk, when I usually do a good long one. It was more than enough and I can tell I'm still pretty tired and even a little lightheaded, but again all is really good and I can't really complain.
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@threetree I’m glad the biopsy went ok. You handled it well! Not a fun activity, that’s for sure.
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