How are people with liver mets doing?
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Sounds like a good plan BevJen.
If my wife ever does xeloda again, she's not taking more than 2000mg/day. There's good evidence it works well at that low dosage, regardless of surface area calculations used for conventional dosing that often prescribe twice that amount. When my wife quit xeloda for palbo, she was only doing 2500 total per day, and taking lots of time off to lessen the hand foot syndrome. She quit the 2 weeks on, 1 week off after experiencing too many side effects.
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Oddly, for me, the hand foot stuff wasn't too bad. It was the appetite suppressant effects and nausea that I couldn't deal with, and I was on less than 1000 mg per day. My doc was hesitant to lower it any more. Suffice it to way that it would be a very good weight loss pill for someone, as it was for me.
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Wow, everyone has such unique responses and side effects. It's no wonder so many side effects are listed, and some at opposite ends of the spectrum, like constipation and diarrhea.
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Interesting discussion around PC. I was on Xeloda and capsular retraction (which seems to also be linked to PC) was noted in September. My MO only let me do six cycles of Xeloda as he was concerned about marrow toxicity. Who knew that it also may mess with the liver!
Update on my situation, the NP actually called me on Wednesday after all. I think the scheduler must have let her know I had an issue. Well… after listening to my description of the symptoms, she felt I needed an urgent CT as, if the kidney issue had advanced it was a medical emergency. (I wasn’t in agony but the discomfort had become pretty much constant and by Wednesday I had potentially referred pain in my right shoulder. So off I went to Emergency. Argh! Eight hours later (and lots of stress from being in probably the worst possible place while on chemo) I had good news - no change in the scan so kidney not packing it in just yet. Of course, the flip side is we still don’t know what’s going on but on a positive note, my MO is back next week and I see him in person on the 15th! 🥳🥳🥳🥳 First in person oncologist appointment in over two years.
Started round 2 of Eribulin today. Apparently they are holding the dose at 80% just in case the discomfort is from the chemo. Not thrilled with that but will discuss with MO when I see him.
Sending positive thoughts to everyone. Pat
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For those of us dealing with psuedocirrhosis, or just worried about liver toxicity from chemo, was Just wondering if anyone here is taking S-Adenosyl-L Methionine (SAMe) for liver support. I've been trying to read up on published abstracts and studies, and it sounds as if this supplement does have benefits for liver disease. I haven't read of any negative effects from taking this, other than possible upset stomach. It is a rather expensive supplement, but I already take so many supps, what's one more!
I do research these things a lot, and if there are no known negatives, I figure when you're stage IV, if it can't hurt you, and it might help you, I will try it.
Your thoughts?
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Sunny...no i have not taken that or heard of it...however I just started taking TUDCA...which there is a lot of literature on ...and even my MO said she had no probllem with me taking it.
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Hi all, just an update on my mum. She had covid in January and thank Pfizer she's alright so now we can focus on continuing her treatment.
She's probably going to continue with Ibrance and undergo cyberknife treatment. Can any ladies on here tell me what to expect of the procedure itself and what comes after?
Is placement of gold markers painful and does she get an anaesthetic? She's already so traumatized from a very painful biopsy and I'm scared this placement of gold markers might trigger her PTSD. She's already not doing well mentaly and I'm doing my best to keep her feeling happy and like life's worth living.
All help is appreciated. 💜
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Dear DaughterOf, where do they plan to insert fiducial markers? Saulius
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Sandra, thanks for replying.
That's the deal, I don't know what they are so I'm not sure how they will be placed. She has 2 larger lesions on her liver only, which are now apparently fusing. Pet scan showed nothing else.
They want to place the markers as a guide for the cyberknife but I don't understand whether they'll be placed on the skin or in the liver itself which is why I'm worried. If the placement is in the liver I'm scared my mom will be traumatized again.
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DaughterOf,
Glad your Mom is over COVID.
If this is the same thing as the clips they put in when doing a biopsy so that they know where they have been, they are not painful at all. I don't remember them putting in a clip when I had my liver biopsied but they definitely left a clip in when they biopsied my breast. I've also never heard them referred to as "gold" markers before.
I'm sorry your Mom experienced a lot of pain with her liver biopsy. I didn't have any pain at all. Sounds like they didn't give her enough local anesthesia. Was it a core biopsy? A core biopsy is usually how they do it and they just take out tiny thread-sized samples with a device that's kind of sounds like a stapler gun.
For targeted radiation like Cyberknife, they usually mark your skin with a permanent marker or sometimes a tiny dot tattoo. I have not had radiation to my liver but I've had radiation to my brain (both WBR and Gammaknife), femur bone, lung and rib cage. You Mom may feel fatigued for weeks afterward but it should not be painful. Hopefully, someone who has had Cyberknife to their liver can give you more information about that.
Hugs, Susan
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NicoleRod
I hadn’t heard of TUDCA, but after reading some of the info on it, I will definitely inquire about it when I meet next with my gastroenterologist. My gastroenterologist’s plan was just to monitor me, but I’ve always been the more proactive type, and anything I can take that might slow the progression of hepatocellular injury seems like a no brainer to me.
Big Thanks!
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I found a really good video about portal hypertension leading to ascites and varices. It is made by Elsevier, a medical publisher.
Portal hypertension - causes, symptoms, diagnosis, treatment, pathology - YouTube
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Dear DaughterOf, ok, liver. Marker placement should be done almost same as biopsy, with special thin needle, image guided. It should be done under local anesthesia. Unfortunately, human organs move as we move or breath, inner organ sizes change depending on what we eat, drink, etc., therefore markers are very important to be able to find and target lesions well, so that nearby tissues do not get more radiation. If lesions are close to one another, there will certainly be only 1 marker, few people that I talked to experience mild discomfort (pain levels 1-3 during procedure). The radiation procedure itself is super-easy, will be done in 1-5 fractions, and your mom will experience some minimal delayed SE, or none at all, if lesions are not big - liver is a huge organ. Cyberknife is generally considered a state-of-the-art and very patient friendly procedure. What you could ask your MO/RO additionally: 1.Can lesions be easily seen on CT? If yes, and if your mom is very anxious, SBRT could be done without fiducial markers with probably larger margins. 2.Can full short anesthesia to your mom be done if markers are essential? Saulius
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Husband11,
Thanks for posting that video link, very informative!
Sunny
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If you start here, you get the complex answer as to why portal hypertension causes the ascites:
https://youtu.be/VTnAp-ngAXw?t=2220 -
An interesting article on the effect of posture on ascites caused by cirrhossis. Basically, lying down alters the release of chemicals that control the rate of the kidneys, and improves the effect of treatment for ascites.
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Husband11,
Thank you for your "basically" sentence. That article is pretty dense and difficult to follow. Kudos to you for being able to interpret it. I would have missed the takeaway completely, or, better yet, probably wouldn't have found it because it's so high level.
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I'm having my second round of trodelvy tomorrow (cycle 1). My LFTs continue to be elevated and my bili has gone up just a bit past norm.
My question is: those of you with significant hepatic tumors/impairments, have you been told anything about dietary interventions to support the liver? All I'm seeing is the generic "eat fruits & veg, avoid red meat, avoid booze blah blah" It's too basic...
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Dear Moth, there are several ,,traditional" compounds/hepato-protectors that are/were in clinical trials for liver cirrhosis/impairment, also having some proof of possible anti-cancer and anti-metastatic effects. One example could be Cordyceps Synensis, another - alpha-Lipoic-Acid (ALA). The latter is a strong antioxidant, so caution should be taken when with chemo. Cordyceps Sinensis is used to even treat alcoholics. You must check or consult your MO if it could interact with SN38 though... There are several others (like milk thistle) but Cordyceps Sinensis (600 mg/d) and ALA (100 mg/d) I found most convincing. Sandra uses them daily, one month on, one month off. Our hepatic specialist was OK with these two when we told her but... everyone's situation might be different, everyone is on different drugs, so please tripple-check.
Saulius
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Moth...sorry...i don't know what LFT's stands for but I am assuming you mean something with liver numbers... ALT AST ALK PHOS and Bili.....I have a very very high Alk Phos on this (but it can happen in 36-50% of the people on it) I have liver tumors and my bilirubin was good but last week it started to rise and I have pain in it, cosistantly. I started taking TUDCA which my MO is ok with. There is a lot of research on it. You might want to try it.
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thank you Saulius and Nicole! (LFT = liver function tests) in our system. They clump them together...
Most everything actually dropped about 10% last lab work on Tues but bili is UP now (in low abnormal) & I'm low albumin again. This happened in 2020 too before I started Tecentriq. I'm feeling good after my second round of cycle 1. Hoping it's working for me!
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Glad to hear that you are doing well with your second infusion Moth. I had infusion 2 cycle 2 today and am finding Eribulin very tolerable. Just tired mostly.
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Sadiesservant , glad you are finding Eribulin tolerable. I had only one infusion on 20th Jan and my MO had to postpone the 2nd infusion to 10th Feb due to low blood counts (platelets). I was given Iron infusion, Neulasta and Darbepoetin but nothing can be done for low platelets. I am concerned that a 3-week gap between two infusions may increase my liver mets.
My blood counts always dip with any chemo, so it has been hard for me to continue any treatment without breaks. I wish I could do something for low platelets. I have increased folate and vit C containing fruits and veges in my diet.
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There are platelets transfusions. I wonder why do you not qualify for one?
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I met with the trial MO and a couple team members today and made the decision to be screened and hopefully enroll in this “SEGE” trial. It’s an antibody drug conjugate and my group requires being triple negative and no prior chemo. Made for receptor flippers like me, maybe? Unless something comes up with my qualifying, it’s get port and pre-study scans on Tues. and first treatment on Friday. Feeling ready, hope it happens.
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Sorry to hear a about the platelets. That’s one issue I haven’t had. Typically for me, it’s my hemoglobin and other red blood cell issues that limit me. That’s what led to a quick stop on Ibrance and then stopped me from carrying on with Xeloda. It’s so odd to be in that space when others get years on these treatments. Hope your platelets get back into range for you to start again!
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i was diagnosed with bone Mets in 2019 and liver Mets in 2020. I have been on ibrance, anfinitor, abraxane and now I am on piqray. No bone Mets progression but now liver mass progressed. The longest I have been on medicine is 9 months. Mostly only 6 months due to liver Mets progression not side effects. I really don’t know what to expect next.
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Smokey,
Maybe Trodelvy or Xeloda?
Hugs, Susan
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Susan,
I’m going to ask my dr about xeloda or a trial. Thank you for the info,
Smoke
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xeloda got me 5 years of NED. I did have to lower the dose one time: I’d go back on it in an instant if they let me circle back.
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