How are people with liver mets doing?
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Lisa, yes it is possible to keep them under control for a few years or more. My liver panels stay in normal range despite having a liver full of tumors from the get go 3+ years ago. There are people over 10 years out on BCO who have had liver mets just as long. When I was diagnosed, I was told one only needs 10% of the liver to function. Also, the liver regenerates itself. It is a durable organ and can withstand a lot. Congrats your AST is going down! Good sign that A-train is working
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Shetland, I think what you said rings true for a lot of us. I have felt the same way at times. And, on top of everything else, this thread moves so quickly it is hard to keep up!
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Thank you so much!
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Amethyst (oh love that color) you are going abut your life and then bam something new to deal with, it's a wonder that any one is functioning at all. You are so lucky to have a circle of solid friends you could call on so it's a great idea to take them to appointments.
Shetland i (not that i could possible compare myself to you guys), but even when i don't post you guys are the ones that are always on my mind. Yes, it's a strong relationship here, sincere and very honest, so it's easy to miss this when we are not following all the time. But as all the lovely ladies said it here, things are always going on YOU are not the monster thingy, you are people, moms, neighbors, daughters, friends, things are going on, life does not stop so yes, in a way it's good but in a way it gets very cumbersome. We are here when you can, when you need us.
Bluebird, this is the old age question, we've been debating in BCO WHAT is the best mode to know what's going on? Zar explained it beautifully. You make sense in your thought process. I am still always wondering. Dani has always gotten a PET/CT, when she was on trial they only did a CT and they ignored her brain (she was getting Brain MRI's for mets), anyway, just 2 weeks ago she was gonna get an MRI for the Brain and the spine, but she was in such pain, they switched it to CT w contrast. And, she was due in the next week or so to get a head to knee Pet/CT and there is no way she could be in the machine that long, so it will be just a CT w contr. Yes, we are upset about it but no choice. Although i did hear that in Boston or and in SF they only do CT's. I think Deanna said only CT for her.
Zar hope you get a lot done over there.
Babs you got the results from the new scans?
Robin thanks for the informative pm
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Lisa - My liver markers are out of control (AST 100 AlkPhos 800) but I am told that I have the liver panel of the average alcoholic. In fact, I don't feel too bad. Like all these biomarkers, the relationship to progression and most importantly liver failure is not precise. You can't say that when your AlkPhos exceeds X you bile duct will fail. I am told that bilirubin is key and mine is normal despite all these other numbers being high.
I think the main way to use them is as a measure of response to treatment ... down generally means you are responding.
Those of us who have manage to develop really extensive mets (mine were "innumerable" in the lsst scan) have come to be very impressed with our livers. It's a robust organ. I am told that it functions surprisingly well with only 20% healthy tissue. Of course we don't want to get close to that, but bad liver markers don't indicate your imminent demise. It does indicate that you need to be aggressively treating the mets.
>Z<
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lisajo. Yes this is the right place to get info about liver mets. I was DX with over mets over a year ago. There were eight lesions. I had no symptoms at all, no pain, perfect liver panels, etc. The symptom that took me to pcp was a cough, I thought I had pneumonia. Nope, it was mets in lung and chest. Shock.
The other thread that you might want to read is called liver mets: sbrt, y90, resection, etc. It's about local treatments to the liver, in addition to or instead of systematic treatment.
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To Z and all, thank you for the input on PET / CT vs other scans. Decision made. I will advocate for the PET / CT w contrast. It is exactly what is needed to compile results and not waste past scan info.
Shetland - I missed you. And I understand all too well. Two years ago I sat here and shut down, walked away. Too many gone. Entire threads shut down where we gathered and partied and laughed. All gone. Women dying and hopelessness drowning me. It took mets and a downward spiral in my health to bring me back for research. Only to find my support group here. I will not leave again. Twice was enough. But I post a little and I post a lot. Grieving is a huge part of this board. Grieving that never ends. And then there is hope. If not for one then for another.
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kaayborg,
I am so sorry foryour progression. I have not posted in a while but i do read the posts from time to time. I habe noticed you mentioning taking optdivo as an immunotherapy drug. Has you MO considered Ketruda? Did she give you a test to see your elligibilty to it? It seems to be the latest and if your test is positive there is a possiblilty it would help.
I am one of the few whose cancer turned her2+ and i am lobular. Till now my liver is free. I do hope yours turned too and pray for it.
God be with you and your family.
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Hello Everyone!!!! I just now finished catching up on all the posts I missed in my absence. Welcome to all the new ladies who are posting! You are definitely in the right place for loads of valuable information.
Shetland, I understand the need to take a break from BCO. I encountered a bit of a crisis in my disease that reared it's ugly head with no warning. I took a break to get better, and then I was still finding it hard to get back on the site. I think it was my way of self protecting. I just wanted to escape from it all. Then I start wondering how everyone is doing and so forth. So I started from the beginning of the posts that occurred in my absence.....and there were so many....and worked my way through them.
Artist, I was fuming about how long it took for you to get back on treatment!!!! Didn't you also experience the same thing when you went on Xeloda?? There is just no excuse for this!
Z, Back in Japan and I am praying and sending good peaceful vibes! I like the fact that you are resting more on this trip and focusing on killing the beast!
Bluebird, I get a PET/CT with contrast. My MO wanted CT with contrast, so we compromised. I definitely wanted the SUV levels on my report for my own personal reasons. They do this all at once and takes about 30 minutes.
Lisajo, If your liver numbers are coming down, then more than likely the treatment is working. I am also on Abraxane and after 2 treatments my AST, ALT, ALK PHOS, and bilirubin all came down to normal range. I get copies of my blood work every week and focus on those numbers to boost my spirits and tell myself........YES, It's Working!!!!! I also get my tumor markers done weekly. My TM's have always been spot on, so if I see a big increase....we will watch it closer.
Momall, Glad to hear Dani will be starting her new treatment. Praying for major regression!!!
Grannax2, You can talk about your Y90 experience all you want. Your story really gives me hope, but I have to get over my fears first.
Glad to be back and feeling good!
Robin
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Kaayborg, Glad your treatment is working for you!! WOO HOO!!! Isn't Cisplatin the stronger version of Carbo?
Babs, Good luck on Friday with your Y90. Praying for results like Grannax2.
JFL, Aren't you pursuing Y90?
Kaylynne, Im praying Xeloda is your magic bullet. I think you are going to need more cream for the hands and feet!!
Husband11, Your wife's experience with hepatic artery blockage sounds much more severe than mine was....but I will say..... I have never had such severe pain in my life. I started Abraxane on the very day I received the news that my tumors were pressing on key hepatic arteries and viens. I was so scared and wondered if this was it. I can only assume the Abraxane is working, because the pain went away after a week and a half, and my liver numbers are all in normal range. My MO told me I was in serious condition and it all depended on how I responded to treatment. God heard my prayers! I am glad that your wife is doing great.
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Lillymillie, Zarovka, Kaayborg, Grannax2, Babs, AnimalCrackers, JFL, Momall, Bluebird, Robin — your responses and understanding mean so much to me. I consider all my BCO friends as real friends and am glad to know my absences are not interpreted as not caring. And thanks also to the ones sending silent support because I know that happens here a lot, too.
In fact, a special Hello to Woody, one of the first ladies to greet me when I joined! Robin, wow, I’m breathing a sigh of relief for you. Thank goodness the Abraxane is working.
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Woody! It is so awesome to hear from you! I was just thinking of you a few days ago and then, here you are.
I have tried Keytruda in combo with eribulin but it didn't work so much despite testing as one for whom it may have more likelihood to work. I was in a tough spot and needed something to shrink these buggers a bit. Seems like cisplatin and gemzar may be doing the trick. SE are much better I can say that for sure. Feeling pretty normal except the fact I look 7-8 months pregnant. Many congratulations I have received of late... awkward. Olaparib is something to try maybe in the future but not the best choice right now since I'm not brca positive.
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Babs, definitely thinking of you Friday. Best wishes for wonderful response and no complications. Still hoping the door may open for me and Y90 someday.
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Kaayborg - this is good news that there is progress. Something working for you.
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Hey Robin - We've been needing a MomATT -like comprehensive round up post for ages. So pleased to find you have the energy. Back at ya lady!
>Z<
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Robin-I ordered lotion in bulk
Kaayborg-YAY!!!! It's working. I am so happy for you.
Z-Best of luck with your treatment in Japan.
I am a liitle nervous. This is my week off of Xeloda and I am having liver pains. I didn't have any when I was taking it. Something my onc said worries me too. She said, "We may not have enough time for this to work." Does that mean this has a slow response time?
All of you ladies are fantastic. I've learned more here than anywhere else. Thank you for your dedication to this thread.
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rpoole It is so good to read a long post from you. Glad to hear you say you are feeling good.
I think about all on this thread and find myself wondering about you're all doing. Sometimes even in the middle of the night! When that happens, I pray for each of you.
I'm doing good, still riding on a high from January PET that showed no uptake in liver mets, again. Of course, I still have SE of IF. Yesterday was not a good day. The mouth sores are worse this time, fatigue Ugh, joint pain Ugh, pity party was especially hard yesterday. But, today I woke up feeling better! Then I got a text from DIL asking if I can come over to help out with my grandchildren. That's my happy place. So, now I'm excited and have lots of stuff to do to get ready to spend two days with my adorable grandchildren. YAY😁👦👧
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Regarding response time for xeloda, my wife saw a 10% drop in tumor markers after only her first cycle of xeloda for her liver mets. As time went on, the pace of falling tumor markers progressed and peaked at a couple of months into it. A scan at around 3 months showed some regression of the tumors, but for my wife, the tumors being diffuse, visualizing regression is difficult, as her liver is very messed up looking due to the diffuse nature of it. It gives it a pseudo cerrosis look, in other words it looks like cerrosis, not cancer, even though biopsy proves its cancer.
So, xeloda can work rather rapidly. Not sure its as rapid as say abraxane, but still rapidly. Personally, I have this uneducated view that you don't want it to work too rapidly in the liver, as dieing cancer cells have to be reabsorbed by the body, and in my wife's case lead to a temporary state of blockage and subsequent ascites. It might have been better if she took a lower dose and spread the healing out over time, but then again I am no Doctor.
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Kaayborg, yayyyyy this is good news , i am so happy for you and i hope it shrink these buggers to oblivion. Thank you for your warm welcome back . Even though i was not posting i kept track of all of you lovely ladies.
I am sorry keytruda did not do the job but then all immunotherapies are still in the trial period. It is good we still have other options. I hope your new treatment will go a long long way.
I have just started a new one tdm1 i progressed on the bones. Next week is my third dose. Fatigue is mainly the SE so far.
I hope your SEs are tolerable and easy on you and tough on the cancer. Hugs.
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Shetland , hello to you too , you were so easy to welcome
. Absences are always understandable here , since sometimes it gets too much. But like you said the friends we make here are real friends and wonderful people. Always nice to hear from you all. Kisses. 0 -
Kayboorg - it’s great to hear the new treatment is working.
Kaylene - hopefully the liver pain is because tumors are dying. I can appreciate your concern about what onc said. It seems like a lot aren’t very sensitive to how they are communicating or what we may be interpreting from what is said.
Robin -it’s so good to hear from you. Glad things are looking better.
Bluebird - on scans I get a CT of my chest without contrast, and MRI’svof my abdomen and pelvis with contrast every 3 to 4 months. I’ll get another bone scan once a year unless I start showing of the activity. At this point I just have liver Mets. My insurance denied a pet scan my original diagnosis. My onc says the MRI with contrast is the best way to measure changes in the liver. But at some point I would like to get a PET. The insurance rationale was that it wouldn’t impact treatment. I still haven’t set up a second opinion so maybe when I go for that I can get one.
I had a brief moment of panic today. I called my treating facility to ask for copies of my blood test with tumor markers from last week, which I’ve gotten from the front office in the past without needing to talk to my onc. She looked in the system then told me she would need to have the doctor call me, so my immediate thought was “this must be bad news”. Fortunately my onc calledback really quickly within 10 minutes and told me that the markers were stable. They were just having issues with access because they’re converting to a new system. It would be nice if they would go down but I’m OK with stable. I decided to delay my next scans until after our vacation to Hawaii next month.
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Kaaybirg. I’m hoping you can do the y90 too and that we all get the same results as Grannax
Woody. Happy to see you back here! Hope the new tmt is easy on you and works to kill these little buggers that seem to like our bodies. Wish they didn’t
Babs
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Babs good luck with your Y90 Friday, wishing for wonderful results
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My goodness, you're a bunch of world travelers, aren't you? Hawaii and Japan? Makes my upcoming family cross-country drive from PA to CO look like a drive across town!
So my funny story for today is that I ended up in tears over some stupid billing confusion at the lab when I went in for my now weekly blood work. I apologized and told them I'm still on edge after finding out about my recent progression, and that I'm terribly anxious about needles in general as I prepare for my first dose of Faslodex next week. Through my tears I wailed, "I'm getting stuck so much you might as well just call me Princess Pincushion!"
Well, after an unexpected hug from my phlebotomist, she told me that I can expect her to have my Princess Pincushion crown ready and waiting for me next week!
It's these little sparks of humor that make the dark moments so bearable.
I may not post much, but I'm really enjoying reading about the many stories of success and relief you ladies are posting. Your success gives me hope.
Keep hoping, keep fighting, and find something to laugh about!
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kaylynne, I'm not a liver mets gal (although in 2013, lobular mets shut down my common bile duct which caused my liver to fail four times in four months, with pancreatitis thrown in for some extra drama), but I keep this thread in my faves because my buds are here, and you're all so smart and lovely and funny and I learn so much here.
I took Xeloda for three years for widespread bone mets. For me, Xeloda worked fast and very well-- I was NEAD for almost three years on it, the longest PFS I've had on any line of treatment yet.
Also, like you, I felt it during my off-weeks at first, kind of like it accumulated during the on-weeks and then got to work the following week when it had reached full saturation. In the months before I reached NEAD on it, it made my bone mets ache like mad during my off-weeks. Obviously, it was tumor flare (die-off) pain.
I'm hoping that's what you're feeling in your liver and that you have a string of good checkups ahead. All the best to you.
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Kaylynne, in my experience, Xeloda works very fast. When I started, nearly my entire left lobe of my liver consisted of cancer per the description in my PET scan and the right side was filled with large tumors and innumerable small tumors. By my 3 month PET, my mets had shrunken significantly and had zero increased metabolic uptake and were inactive. Not only did nearly all of the mets in my left lobe disappear, but the liver tissue regenerated itself. It worked faster and was more effective and worked for a longer time for me than Abraxane. Like Lulubee, I also had more side effects (including liver pain) on my off week. That was when my liver pain (from dying mets) and hand issues were the worst. It is a timing thing with the cycle of meds. My tumor markers and liver enzymes flared during the first 3-4 months on Xeloda, which I understand is somewhat common. I hope it works for you. It is a really great medicine.
Robin, so wonderful to hear from you and so happy Abraxane is doing the trick! Scary stuff. You are a trooper. I am looking into getting Y90 on an expedited basis. Hoping the diffuse nature of some of my mets will not be an obstacle to that.
Woody, nice to see your posts!
Kaayborg, the whole "congrats" thing is just awful. Really like rubbing salt in a wound with that one.
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Husband11, Liwi, Lulubee, and JFL- thank you all for your responses. Did you hear my sigh of relief? I love these boards and you all for this very reason. Have a wonderful Hump Day!
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Lulubee. That sounds terrible! Mets closed off your bile duct? I give you permission to be on this thread!!!Ha. I think you've earned it. I know pancreatitis is horrible all on its own. I had a botched adrenalectomy that caused a huge abscess and made my pancreas mad. It was horribly painful.
JFL yOu had your consultation with the IR on Monday, right? So, he must have said you are a good candidate for it? Where is he located, I can't remember which one you decided on. I'll be praying for it to get expedited and scheduled ASAP.
Kaylynne. Isn't it great to get that encouragement right here from ladies who have had fast response from Xeloda? I'm hoping your next scan will show a a reduction of uptake.
Amethyst You'll have to post a pic here of you with your crown. All of us have had meltdowns about seemingly insignificant things. I think it's because we are coping with such HUGE things and then a little thing pushes us over the edge and the tears just come pouring out.
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Babs, thank you for your warm welcome. I hope you are doing well also. Tdm1 till now this is causing me extreme fatigue, low fever and a strong indigestion. Fo course i have to monitor my liver enzymes ( it has a high rate of liver toxicity) and my potassium level. My heart is also being monitored. I will find out if it is actually working in mid april. I will shcedule my pet scan. I will drop in as much as possible. I hope we all are anle to fight this beast.
JFL, i am almost sure you are her2+ if you do the CISH. Frankly FISH failed me twice i came out negative when i actually was positive.
Kaayborg , i do hope you are eligible for Y90.
KISSES TO ALL
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Babs, thank you for your warm welcome. I hope you are doing well also. Tdm1 till now this is causing me extreme fatigue, low fever and a strong indigestion. Fo course i have to monitor my liver enzymes ( it has a high rate of liver toxicity) and my potassium level. My heart is also being monitored. I will find out if it is actually working in mid april. I will shcedule my pet scan. I will drop in as much as possible. I hope we all are anle to fight this beast.
JFL, i am almost sure you are her2+ if you do the CISH. Frankly FISH failed me twice i came out negative when i actually was positive.
Kaayborg , i do hope you are eligible for Y90.
KISSES TO ALL
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