How are people with liver mets doing?
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sigh. Can’t catch a break
I had to have my second liver biopsy yesterday as my liver is completely abnormal and they don’t know why. They are hoping that it’s an infection. The alternatives are not good . But given how fast my liver parenchyma went from normal looking to abnormal (I’m thinking they mean fibrotic) they think infection vs toxicity. I’m not sure though. They’re so hard to read because there’s so many doctors involved now and they all have their opinions. My portal vein is completely blocked by a clot and I have very little blood flow going through it so I start lovenox today in hopes of clearing that up and getting that moving again. Sometimes I can’t believe this is happening. It’s very scary because now this is likely not cancer related (maybe it is but they said it would be very unusual). Like I did everything that was asked. Got through the treatments and now I have this threatening my whole world. I’m trying to stay positive bc I have no answers but the level of frustration is so high. Especially when this problem started well over a month ago and no one was “panicked”. Now it’s a race . 🤦🏼♀️
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BAP. You really can’t catch a break. I’m sorry you’re having to deal with this, too.
I did message my nurse about the low iron. She said she’d get back to me on Monday. I looked back at my July 8 labs. My iron and iron saturation actually got lower while I was on those yucky pills! She didn’t order a CBC so I don’t know how my anemia is.
Candy, at long last you have a plan. P
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BAP, I’m so sorry for all you are going through. It’s staggering how many ways things can go sideways with this disease. Just when you think things are looking good… wham! Sending hugs and hoping your team can get this all under control.
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BAP, I agree that’s it’s frustrating to have faith in doctors when they minimized your issues a month ago. And having several opinions given for the same issue isn’t easy for the patient either. I hope the clot can be broken up and this is the start to things going your way again. Sending you some strength and my best, best wishes for healing
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BAP - How frustrating and scary. Hopefully, now they'll have the one right answer/solution for you from this biopsy. Sending cyberhugs your way.
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B-A-P, so sorry you have this scary stuff going on. Totally get the frustration of wondering why the doctors did not hear you sooner. If infection is the least concerning explanation, then let's hope for that. I had an abscess on my liver a couple years ago, probably related my then bile duct stent being a highway for bacteria. They stuck me in the hospital and would not let me go home for two days until they ruled out septicemia. Then the infectious disease specialist saw me, and prescribed daily IV antibiotics (ertepenem) for a whole month at home, with a visiting nurse until I was ready to do it on my own. The antibiotics took care of things.
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(Posted on a different thread.)
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BAP
sending good thoughts to wrap you up in warmth and comfort as you wait for answers. 🦋🦋🦋
Dee
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thanks everyone . Hopefully just a blip - hoping the clot breaks up quick and the damage isn’t too severe. I do have some ascites but that’s purely because the portal vein is completely occluded. 🤦🏼♀️🤦🏼♀️
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There are people here on BCO who have come back from some pretty gnarly complications, so yes, hope!
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Hi All..thanks for all that have asked about me. Y90 went well (though we wouldn't exprect to see any side effects until 3 -5 days after, last time it took over a week for me to see them) but I am holding tight for NO side effects. Unfortunately my esphagitis from the Rads to my spine has set in...but I am hanging tight with that as well..I been drinking throat coat and sucking on throat lozengers they definitely help a bit and I have this pink prescription stuff they have me for my stomach (last time I had Y90) and it numbs your esphogus so I take that right before eating.
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Oh, wow Nicole. Glad the procedure is behind you. You are one determined woman. May your recovery be fast and uneventful!
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I fogot to tell you all ...I found out that not only have I receptor flipped to TNBC but I now know I am AR- Androgen receptor... if anyone has any thoughts let me know..I am gonna cross post.
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Nicole, I'm so glad that you are on the other side of your y-90, and I hope your recovery goes smoothly!
BAP - I am so sorry that you're having to deal with this! I'm adding my well wishes for a quick and safe resolution.
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Nicole So glad y90 is behind you. Now if we can just get you through the next few days with only minor SE, well be happy
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Dear Nicole, I was a bit away from these forums, but am happy you move forward and wish you a fast recovery.
BAP, uh, wth, they must figure it out quickly what causes high liver numbers, and then they can take measures. Please write us how you are?
Saulius
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PET results on portal now.
SUV in liver lesions-- "SUV max 21.5"
SUV of thyroid nodule-- "SUV max of 7.8"
Meaning??
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NicoleRod- happy to hear that the Y 90 is done and over with, wishing you a fast and speedy recovery without any side effects!
Candy- so glad you have a plan to move forward-happy to hear bone Mets are stable!
B-A-P- so sorry you are dealing with so much. Frustrating indeed- hoping that it's just an infection and nothing more and they can get it cleared up quickly and that they can get that clot resolved fast for you too!
AlabamaDee- congratulations on your new grand child! It must've been a wonderful feeling holding your grandbaby for the first time -you truly are blessed!
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Sorry to be posting a reply here. I’ve been off so long I don’t remember how to post. Anyway these last 17 months have been full of a lot of changes. The biggest one is my left liver lobe is packed with cancer and the left is following behind. Today I awoke and my left side feels like a steel cage. I can’t move left or right without pain. Is this a dog of something? My last chemo I was on was doxil before that taxol and this week mo wants to put me on Abraxane. I have had mouth sores for months. Somewhere in between they chemos I was the lucky winner of wbr - I think that is what it’s called. I remember when iilimae couldn’t eat a thing. Well you have a partner in that area illimae. I’m pretty sure this is getting to end. I’m 8 1/2 years mbc.
Help,
Suz
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HI Suz, I'm sorry you're experiencing progression.
I'd want to know the rationale for the Abraxane because it's a very very close relative to Taxol. sometimes abraxane works where taxol failed but I'd wonder instead about tryng a totally different thing like gemzar or halaven...
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want to thank everyone who replied to my previous post.
so the consultant started the mrs on exemestane plus everolimus for liver (dxed with liver mets 4 weeks ago) and bone mets (after progression on cdk 4/6 inh + ai) about 15 days ago and in the last 15 days she has turned into michelin man. theyve done a ct scan last week of july, no fluid in the abdomen, fast-forward to last friday we are in the hospital because she couldnt catch her breath and she looked 27 month pregnant with triplets, turns out its malignant ascites. still waiting for them to drain it. slow or what? cant help but think that there might be a correlation between the drugs she is on now and ascites (i might be wrong). bilirubin is down, alt steady but albumin is low (onc. nurse says diet has an impact on albumin and she should consume red meat [she is vegetarian]) since she started the meds. she can barely drink fluids (about a litre a day) as she says she feels like she is gonna explode, vitals normal. will they move us to xeloda after a few weeks on mtor inh and ai? i dont even know whats going on, it feels like im watching a fcking horror movie. looked at previous posts, ladies with ascites, some of them been around for a long time. any tips and wisdom would be much appreciated. sorry for the disjointed post.
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nixie, re the albumin, i was told opposite, nope, not diet related. I had low albumin when first diagnosed w/ liver mets in Feb 20 and I'm vegan so that was first question I asked. I was told by several people on my team that this is a liver problem, not a diet problem. I needed albumin transfusions for a bit but really what fixed it was getting the liver mets under control.
Difficult to say what they'll do. They might want to hit hard with chemo or they might just say this needs more time. Hang in there - it's tough when you get hammered with complications.
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I started a new topic concerning my post from yesterday--- SUV values on PET. Check out the Thread and please comment.
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Nixie and Moth,
I was told by my oncologist that albumin is diet related. No mention of red meat, though. Just that if you are not consuming enough nutrients albumin will be low.
And the answer is???
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nixie. I hope she is off of EE immediately. I had a spectacular fail on that combo. Draining the fluid will help her, I’m sure.
Candy, I’ve never had an SUV that high so I can’t comment on that. I hope you get answers soon.
Stilllivin. I’m sure you’ve called your MO about your painful liver. Maybe your labs will tell you what’s happening.
Dee, congrats on your new grand baby.
I go today for my third Moderna vaccine. I haven’t heard anyone talk about SE from booster.
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oh you need to be consuming enough nutrients, yes. Albumin is a protein made in the liver. Proteins are made from amino acids. The liver builds different proteins from various amino acids. It needs raw materials. So people who are not consuming food for a long time will start to see alterations.
But I don't think there's a simple "put this stuff in -> boost this level" relationship. It's not like iron anemia for ex. Yes eat lots of food, try to eat lots of protein, but it can be plant based. And it probably wont budge the albumin because if the liver is not working correctly, it's not making the albumin...
Btw I just saw some guidelines from the sarcopenia/cachexia society with a recommendation of 1.2-1.5 g of protein per day/kg of body weight
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Granaxx2: I got the booster Moderna last Tuesday. That evening my arm felt sore. By Wednesday I felt exhausted and ran an on and off fever for 24 hours. Gone by Thursday. Same side effects as 2nd Moderna. I also posted last week on Vaccine thread. Concerned about effectiveness since I am 3 weeks on, one week off Taxol. Low lymphocytes and steroids said to possibly reduce vaccine effectiveness. Antibody tests not yet refined enough to be absolutely accurate. Reaction to vaccine does not correlate to immune response. Just your neutrophils recognizing invaders and deciding “no big deal". I have no regrets and will take my chances and take advantage of all offerings. My new wonder drug is Tylenol which helped with vaccine reaction. Good luck! I too am a Grandma in my 70's. Boy, have we been through the mill
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Grannax- Good luck on your 3rd booster. I had my booster, Moderna, last Friday. 6 hours after the shot the fever started. Saturday max temp was 103.1 !!!! Splitting headache, nausea. Sunday max temp 100.7. Monday better. It was rough. But still glad I did it. Just hope don't have to have a 4th shot !!!!
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Hi all,
So, I am totally stumped about this itching. Liver function tests came back normal beyond a slightly elevated GGT (which has been out of range for awhile). Meanwhile, the itching continues and I'm feeling crappy. Weird headache and spacy feeling now. No signs of yellowing or dark urine. Just the low level pain in my upper right quadrant. WTH??? Not sure what avenue to explore next...
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Sadiesservant, is there a rash or just itching feeling? I'm guessing when they did your bloodwork they checked creatinine and EGFR? Because kidney issues can cause pruritis also...
Can you try aggressive moisturizing to see if it makes a difference? Is it possible you have a tiny bit of edema? that can sometimes feel itchy
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