How are people with liver mets doing?
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B-A-P Holy Shit!! You went from them "letting you die" to being NEAD??!!! Being gob smacked doesn't even cover what is going on in my mind. Still, your liver is damaged and that is scary. If your numbers are good isn't that a sign that your liver is still mostly functioning?
I do PPI for my GERD but I am doing H&P. I sure hope that doesn't cause it as well.
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elderberry: during my hospital stay , the numbers were trending so badly that they couldn't do anything. But with the bleed, the dr told my husband I'd likely not make it out no matter if I went to the icu. If I was not conscious, my husband was going to not send me down bc they were that sure I'd die. But even with a 60/30 BP , I was awake and with my faculties (though very weak) . My husband told the dr on call “you have to ask her what she wants , she's in there cracking jokes"
And he came to my bed and told me the same thing. I said “if it's not zero percent chance of survival then I want to go to the icu “
And down I went for two days and slowly but surely turned the corner. When I was back in my regular room , he came to me and said “that is the most astounding and remarkable thing I've ever seen in my entire career and I thought you should know “
Then I slowly recovered though the Mos all said no to chemo, I begged to try ibrance. I refused to die after two lines of treatment and refused to not atleast try, come what May. And my pet from last week showed NEAD but progressing pseudocirrhosis which like I stated we briefly touched on but we were so distracted by the good news that I never got into it. That and I read my report after and realized that part of the scan was not sounding great and why are we ignoring it? so hopefully I can get an answer when she calls on my bloodwork next week
Edit to add : absolutely think that it’s a great thing my liver is currently functioning well
I’m concerned about what might happen if it progresses and that changes. I should try to hold on to the good for now0 -
I will certainly keep you all posted as I learn more. The odd part, in my case, is that my labs have always been relatively normal except for my platelets that have been trending downwards for a long time (currently in the 50-60 range) . They haven't been in the normal range for probably over 5 years! Even with extended breaks on the Kadcyla they haven't come back up. The GI/ liver specialist said that when the liver is damaged and can't filter your blood, it backs up into the spleen causing the enlargement, and the platelets don't get released. So, even though I thought I was tolerating the Kadcyla
treatments quite well, they have been doing damage to my liver for quite some time. The frustrating thing is that CT and PET scans don't usually show the damage to the liver. It is the ultrasound that shows the soft tissue damage. It's amazing to me that doctors always order CT and PET scans when an ultrasound is probably much cheaper and a better indicator of what's going on.Here is a copy of my recent ultrasound
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sunny ,
Thanks for sharing
my spleen was enlarged but has gone back down to a high normal range. I think that a normal spleen is 12cm , and mine is now 11.8 - for someone my size though , it’s bigger to me. My liver is also enlarged. It has “significantly shrunk” from last scan but it’s still quite big0 -
So sorry to those of you dealing with Pseudocirrhosis. I greatly appreciate that you are sharing all of this critical information. BAP, your story about choosing to go to the ICU is very inspiring. I don't know if I could be so brave. I'm terrified of the ICU and have all of my Right to Die documents done. You have shown me that it's possible to come out of ICU. It must have been very difficult but you made it and are now NEAD. I'm going to rethink my approach.
I'm wondering if any of you have had localized treatment to your liver like SBRT, Y90 or microwave ablation? I ask because my MO was adamantly again me doing any of those things. There are no studies showing that these treatments lengthen overall survival and they can cause scarring and liver damage.
Hugs, Susan
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Susan,
I had three microwave ablations done on my liver. The first lasted for over a year. We only took out one lesion, and the rest just hung out there for about 14-15 months. Then one of them got active, so we went back in. They didn't get all of it, so my IR went back in a third time. The second and third procedures took a lot out of me. I was extremely tired for a while.
I think that a lot of MOs are opposed to these procedures because they don't know much about them. If you are interested, I would talk to an interventional radiologist at your center for more information.
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BevJen
My GI doc didn't mention pseudocirrhosis, wonder if he's even heard of it. I've been researching it too, and I've been on many of the chemos that can cause it. Stem cell transplant, Taxotere two different times, Xeloda for 10 days until I crashed, when it killed off all my blood cells. Turns out I'm one of the small percentage of people who lack the enzyme to metabolize 5FU. And the last 6 years on Kadcyla, which is known to cause hepatoxicity.
I'm so tired of researching, but you really do have to be your own advocate when it comes to this disease
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Following along in the conversation. My MO wanted me to do liver ablation back last summer. I chose not to, due to a sister that was gravely ill at the time (passed in August). But since then my MO has asked me 2 times now if I am still considering ablation. She really wants me to do it. But, I worry about adding stress to the liver, cause scarring, and elevate enzymes. Causing more harm. And maybe for not better overall survival in the end. So I told her I wanted to keep on the oral meds (Lynparza) for now while they show they are working.
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Hi Susan
I haven’t had the Y90 or any of the other treatments you mentioned, but was referred to UCSF in 2012 when I had taken a break from Herceptin and my cancer came back with widespread mets to my liver. The Dr. there said I had too many spots to treat, snd my best option was to go back on chemo, snd then treat any remaining lesions.
I told my oncologist that I wanted to try going back on the Taxotere and Herceptin since it had killed my widespread liver mets back in 2001. Although I was only able to tolerate the Taxotere for about 3 months this second time, It wiped out all the liver mets once again! I continued on with the Herceptin and added Perjeta for extra insurance, and maintained NED until 2015 when I developed a small spot in my perirectal area.
Then was put on Kadcyla and remained on it until October of last year. Currently off all treatments. Was waiting to determine the extent of my liver damage ad then decide what to try next that is not chemo based.
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Bev I heard the same things for PPI's for immunotherapy as well..sorry but not gonna search the FB group for it too many posts like over a 1000 to sift through..but maybe that was why the Keytruda gave you progression and didn't work?
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Sunny 1997,
I agree with you that you have to be your own best advocate. It should be an interesting conversation with my doc on Tuesday. She presented xeloda to me as an old drug that we know a lot about, and that's why she was recommending it. I do agree that many people seem to do well on it, looking at the xeloda thread, but you reminded me that there is a test about metabolizing 5 FU. Why would the docs not all use that before putting someone on a drug?
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Dear Sunny1997, I think... we still do not grasp what you said: you had widespread liver mets in 2001 and you are still discussing your treatment options in 2022! This is amazing (more than amazing!) but also crazy, as I am sure science and medicine has no data on people... being on therapies, including chemotherapies for 20 years! Wow... Saulius
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I don't know how to find the article this goes to...but this says about PPI's and Immunotherapy....
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Thanks Susan,
I just wasn't ready to throw in the towel. I did have papers signed saying no extraordinary measures, but they told me I could change my mind. I have a 6 year old and I just knew I had to take my options. The icu wasn't too bad in my case. Just some things that I definitely had to give up my dignity for
I also had my bleeds banded bedside and the sedation was not not enough and I was aware for it all and was praying for it to be completed soon. It kicked in at the end cause next thing I knew It was 10 pm. It's possible to come out of Icu. I'm glad I've made you feel different about it but truly it is such a personal decision..0 -
I'm not in a good place emotionally. I'm scheduled to start Trodelvy on Wednesday. I did my labwork yesterday & liver enzymes are just over 3 ULN. They've taken a huge jump since Dec
The drug monograph says they didn't test it in people with that level of hepatic impairment so they don't know if it's safe. I will see my MO later today. I hope that she still lets me try the drug.
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Moth,
Do you have a palliative care doctor? I was in a really bad emotional place a few months ago when I looked at my remaining treatment options and none of them looked promising. I wasn't sure that I would make it past the end of 2021. My palliative care doctor put me on a low dose of Remeron which really helped my mood and sleep. I also started talking to an Onco Psychologist and read up on Mindfulness-based Stress Reduction. I strongly believe that my cancer progresses when I'm stressed. I've seen it happen twice. So it's important that I keep a lid on my stress. These days my stress is much lower and I'm feeling optimistic that I can live long enough to see the approval of some promising new drugs.
Seems to me that Trodelvy will be safer for you than old-school chemos since it's a targeted treatment and less toxic. Hoping you will find the right treatment soon.
Hugs, Susan
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Moth, I hope your appointment with your MO went well today. Please keep us posted.
I am in a similar situation, my tumor marker CA 15.3 jumped from 647 in Nov 2021 to 1058 last week. I hope halaven works. This is my last option. I am trying to remain optimistic.
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Moth I know we spoke yesterday...sorry you are still feeling worried. I would call you MO. I went today and my Alk Phos has jumped from 355 last week to 466 this week..my MO is still not concerned and wasn't even when it was in the 500's mine is obviously gonna keep going up and up bc it can happen in 36- 50% of patients on this drug...I don't think she will even be concerned unless I go into the 1000's.....she said its the bilirubin she will get concerned about.
On a side note..I now have to have this black cloud over my head...bc you all go by TM's...well we go by my "bites" and my bilirubin...now ...my bilirubin was steadiily dropping from 1.6 down all the way (last week) to 0.6....now its at 0.7 I know you all are gonna say thats ok...and maybe it is..but when the Eriubulin stopped working it went from 0.6 to 0.7 to 1.1 to 1.2 and kept going so the same way you guys worry about TM's I am now worried
. This SUCKS gosh I just want one treatment to work more than 4 months is that too much to want?!?!?!Sorry for the vent.
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Oh Moth, I wish I had some great advice for you. I do hope they let you go ahead so that you are able to get those numbers back down to where they should be. I know we all watch those numbers like a hawk and it's unnerving when things start spiking.
You'll be in my thoughts on Wednesday. Sending a virtual hug.
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Just home from appointment with MO and she said I can go ahead with treatment on Wednesday so that's a relief. Thx everyone.
I need to get a grip on myself. At one point I was saying to myself "girl, you're not thinking straight. It's gonna be fine" and then I thought "wait, not thinking straight..that's a symptom of liver problems. See?? It IS bad." 🙄 At least I can still laugh at myself sometimes lol
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moth- your train of thought made me laugh. I hope that’s ok. I live with brain Mets so when I forget something I find myself thinking am I old,or it’s the brain Mets. But whenever I find I haven’t been kind, I say we’ll that’s because of my brain Mets.
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Fabulous news Moth! And thanks for the chuckle. While outwardly everyone thinks I am handling the whole MBC thing well, I constantly feel I am teetering on the brink of a full blown psychosis. The ability for non-medical folks like meto “look things up” is definitely a double edged sword. There are oh so many things we can stress about! Ha!
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Moth- such good news.
my brain goes places too.
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Moth, great news that you can get on the drug. Hopefully this will work wonders.
Nicole, my liver enzymes are going up but my MO is not concerned. How are your tumor markers? Do they test CA 15.3, CEA OR CA 125? For me, all 3 are going up. Don’t know what to make out of this.
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Dear Moth, uh, I am happy you will move on. We never know what our "wonder-drug" is, and I believe Trodelvy will be good for you. Best wishes for tomorrow, fingers crossed!
Dear Nicole, your BIL change from 0.6 to 0.7 can be related to simple things like food, blood structure (more red blood cells?) and finally - drug itself. It can go down or jump quite quickly, but if it is in norms, it is in norms. I know how slightest things make us worry (same with me) though... wish you could calm down... when is the next scan to see the effect of Trodelvy?
Hugs, Saulius
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S3k5 my TM's have never been checked since diagnosis bc they were never changing and all the MO's I went to felt they weren't reliable..plus my bilirubin and "bites" were always on the mark..but NOW i think my body doesn't get the "hyper sensitivity" that was causing my itchy bites...now I think my body got use to the cancer....
Saulius...I will have a video meeting with my MO on Monday the 31st I believe. I believe we WERE SUPPOSE to scan after 6 or 8 cycles (I think 6- thats 6 infustions of 2 week on 1 off) however I had 2 and then stopped for almost a month...so now...by the time Feb /end of Feb hits I will only have had 4 not 6....(not counting the first 2 I had in Dec before the month break)....so I don't know if she will squeeze in another cycle and scan in March....or just scan in Feb having had 2 cycles....I will let you know what she says.
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Moth,
So happy for you that you will be able to go on Trodelvy! I think that the approvals of Ibrance and Trodelvy really changed the playing field for ER+/HER2- BC. I got three years out of the two of them both through trials and I hope you will do really well on Trodelvy.
Hugs, Susan
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B-A-P,
Well, I wish I had more info to provide you with, but I got off my Telehealth appointment with my doctor a little while ago and it was a real sh__tshow. First, the video connection wouldn't work, although I had tested it. She said she had had the same problem with another patient earlier in the day (I think they mess it up when they try to have 2 people on it -- the pharmacist was on it too from a different building.) So then we were on the phone only, and of course, again, the connection wasn't great. So I didn't even get everything that she said. But here's the gist.
I told her I was worried about the pseudo cirrhosis comment. She said that sometimes that happens when the meds are clearing out the mets quickly (we already knew that). But that she wasn't convinced that that's what it was. So the bottom line was that she thinks we should rescan in 6-8 weeks and see what we see. (Remember, I also have some issues with my tumor markers, that have gone up some.) She thinks that would be okay to catch anything that's going on (but I didn't sense real confidence in that at all). I'm pretty sure that she simply reviewed the reports from the radiologists, and didn't ask them anything nor did she pull the scans themselves (I don't think she does that). So I have no answers.
So we will rescan. In the meantime, I am staying on the same drugs, with a short break from one of them and an increase in the other to see what that does to the total picture. We will rerun labs in about 3 weeks to see what they say and maybe make an adjustment to meds at that time. We may add back in fulvestrant to my xeloda and my neratinib. We also talked about other possible drugs, but since it was such a bad connection, we just cut it off.
It was an exhausting and frustrating call, and I feel very disappointed in the whole thing. Getting ready again to switch docs.
Hope you get better info than I did.
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Bev that does sound frustrating...I had a bad video connection once with my MO too it was a pain. Well I am glad you get to stay on the X for a few more weeks and hoping the scans are clear to read and read properly.
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Onthe last two video visits the doctor was frozen and I wasn’t and my wifi was strong. Not better than a phone call if they are frozen. They said I wasn’t. Audio was fine
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