How are people with liver mets doing?
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@nikkiqh - Sorry to hear you are running into challenges with delayed treatment. Most MOs like to start with 100% dose because they want to hit the cancer hard before it gets a chance to evolve to a particular type of treatment. I think it's good to strive for, but I don't think it always makes sense in reality. However, it's interesting that your MO wasn't open to modifying the dose at all. I often think of conversations with my doctors as a negotiations, there always seems to be some give and take (I am a high maintenance patient - LOL). I very much appreciate their advice, but I don't always follow it exactly (although if they insist strongly, I do). I often get consults from multiple doctors and then come up with a blended treatment plan. Also, I think it's sometimes easy to forget that you hired/selected your MO. They are working for you. Don't be afraid to ask questions and advocate for yourself. Hopefully you can restart Trodelvy soon!
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Hi everybody
Did anybody with liver met did surgery? If yes, in what cases is suggested and when not? Please tell me about your case!
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Amel— I have not had any surgical intervention on my liver mets, but there is a Thread called "Liver mets: resection, ablation, SBRT, Y90, …" that you could read. I don't know how to post the link, but you can search for it in the search bar. The last post was in January, but you could read the responses and reach out to a member that had something done that you want more info on. Hope this helps.
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Ok thank you very much
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Things are not going well for my wife. After receiving the tipps procedure to relieve ascites caused by cirhosis, she developed high levels of ammonia in her blood. That is due to the lack of involvement of her liver in first pass filtering her blood following the procedure. They started her on a treatment, laxtulose, and it seemed to be working in that her cognitive abilities came back, but her blood test of yesterday was a disaster. Her ammonia levels are even higher, her bilirubin is elevated, and her tumor markers have over doubled. She is currently on xeloda, after 5-6 years of cdk4/6 inhibitors which eventually failed. Looks like the xeloda isn't working, and the oncologist says she isn't healthy enough to receive any further chemo because of her liver values. So she is off everything. We are trying tudca on our own, as it has some good evidence that it can relieve some liver problems, and is safe for those with cirhosis.
I pray that her liver values can get back into check, and that the problems caused by the tipps procedure, the high ammonia level, can be remedied. Not sure what her next treatment will be. Any suggestions?
PS: What happened to the dates for treatments on our old signatures? Mine has lost all dates assigned to the various treatments. Where did it go? Can I restore it?
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@husband11 We're so very sorry to hear about your wife. We hope things level off soon and there is some relief. Thinking of you both!
As for the dates for your signature — if you go to your Post Signature, you should be able to see everything with dates (if you've previously filled them in when filling out your Diagnosis and Treatment profiles). If they do not appear there, check your Diagnoses and Treatments via the left navigation menu to make sure they are reflecting correct dates, then check back on your Post Signature to see if they translated. Note: Only Diagnoses and Treatments marked Public will show there. Then you can copy and paste you post signature into your post signature settings and save to have them appear here. We hope this helps and send us a PM if you have any problems!
—The Mods
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@husband11 The news of your wife is so disappointing. I hope her liver starts behaving soon. I said a prayer for her as soon as I read your post. And please remember to practice a little self care. The toll this disease takes on caretakers cannot be underestimated. Hugs to you both.
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husband11, I’m sorry to hear how things are going for your wife and wanted you to know I’m thinking of you both. Sending many hugs.
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Husband11- Sending caring wishes to you and your wife for her to feel better.
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Husband11 - Sorry to here about your wife's problems. Hopefully the Tudca provides some relief. Thoughts and prayers are coming your way. Regarding the Post Signature: I skip the boxes "Add a Diagnosis" or "Add a Treatment" - too confusing. I just click "Copy current signature", then "Continue". That takes you to a box showing your current signature, which you can edit however you want - re-format, add dates or any other details. Your edits will auto format with a space between lines, but this adjusts to single spacing after you "Save". Click "Save" at the end, and when you refresh one of your posts you'll see the new signature.
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I don't mean to intrude but I have been thinking of Nicolrod. Has anyone heard from her or her family?
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Dear Husband11, very sorry to hear these news but just to be precise - can it be that markers are high because of capecitabine working and parts of dead cells in blood? Maybe situation will be reversed soon?
Yes, jhl, I have been thinking of Nicole too, and was hopeful she got onto TIL trial finally…
Hugs,
Saulius
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Dear Husband11, sending you both lots of love and prayers <3
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I am always thinking about Nicole and she is in my prayers.
Thank you all for your kind thoughts and prayers. We spoke to my wife's liver specialist yesterday, who said that her liver values were not dangerously high, and suggested the oncologist re-think her belief that my wife is in too rough of shape to continue treatment. It's weird about the xeloda and tumor markers. We had 3 cycles during which her tumor markers all rose around 15-20% each cycle. Then we added in iodine and exemestane (unknown to the Onc) and her tumour markers froze steady. Now, we have two tests (albeit only 5 days apart) where her tumor markers have now doubled. Its crazy how it went from slow, to stop, and now double 3 weeks later. It may well be related to the tipps procedure. It may be altering the amount of the drug that enters her liver.
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@husband11 - I'm so sorry to hear about what you and your wife are going through. I was going to ask about if you had spoken to a liver specialist (or 2 or 3). That is good news that the liver specialist thinks she is in good enough shape to resume treatment. I hope your wife is feeling better, despite the lab values (I'm always amazed when lab values don't reflect how I am feeling). Sending you both lots of positive thoughts.
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Another detail is that the liver problems, being higher bilirubin, and unacceptably high ammonia, plus the doubling of her tumor markers, all followed the tipps procedure where they put a shunt in her liver, allowing some or all of the blood from her digestive system to bypass the first pass through her liver. Did the tipps procedure kill the effectiveness of the xeloda? It might, because as I understand it, xeloda goes through 3 stages of activation, the first being in the liver, the 2nd two in the tumor tissue. On the other hand, her hand foot syndrome has never been worse, so the xeloda is irritating her feet. Some people think that shows it is being metabolized.
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Husband11- thinking of you and your wife- I hope this all works out and the Xeloda is still working against her cancer! and she feels fairly well while this all sorts out.
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Husband11 - I’m so sorry to hear what you and your wife are going through. It’s encouraging to hear what the liver specialist had to say, I hope the oncologist reconsiders. Sending good energy and best wishes.
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Dear Husband11, have you ever spoken with your MO about possibility of ADCs or immunotherapy for your wife? TDXd, for example, is really effective on liver, and after many years tumor mutational burden might be quite high. Hmm… what do you think?
Saulius
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@bsandra They are really daft here in Manitoba, Canada. Not once has anyone suggested a biopsy to see if there has been any change in the nature of her tumor. I asked about her2 status, and the onc said that her initial biopsy from 6 years ago rules that out. If fact, the Onc has stated that rarely do tumors change over time, yet contradicting her other statements about acquiring mutations. We have access to anything but state of the art. But, Thanks, I will ask.
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If she hasn’t had a repeat biopsy over all these years, they should definitely consider one. The degree of her liver impairment (elevated INR) might be an issue. Interventional radiology would usually be the ones to try and do a percutaneous (needle) biopsy under CT or ultrasound guidance.
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Dear Husband11, understood. But from what you tell, biopsy is a must. I know these MOs and how not easy it is to talk with them when they have their opinion. But to say that biopsy 6 years ago rules out er/pr/her2 changing possibility is a bit irresponsible:/
Saulius
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My wife is ready to just give up and let the disease take her as quickly as possible. None of the medical intervations into her problems have had any success, and the follow up is just pitiful. Try something and see us again in 2-3 months. She's had such low quality of life for the last year, constant coughing and fatigue. If she wasn't christian, she would use medically assisted suicide.
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@husband11 My heart breaks for you both. If medical science can’t help, I hope somehow your faith can comfort you through these very difficult days. Hugs.
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Sending positive, healing thoughts to you and your wife, @husband11 and everyone here.
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husband11, it breaks my heart to read your words. I’m so sorry to hear the difficulties your wife is having. It’s hard to even find the right words to say. I can’t even imagine what you’re going through, but I’m thinking of you both at this time.
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Husband 11, I am so sorry. I just prayed for your wife and for you. You are such an amazing support for her. I pray she finds some comfort and relief soon.
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I am so sorry Husband 11. I am in a lot of pain the last 4 months and it is very demoralizing and depleting. I wish her less pain and some good days.
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Sending hugs to you, @nkb !
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