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Comments

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    BAP thats great news about the NED!!! I don't know anything about the other stuff sorry.

  • husband11
    husband11 Member Posts: 1,287
    edited January 2022

    It seems like the pseudocirrhosis coincided with the largest regression of the cancer, which was back in 1st year of stage 4 diagnosis, while she was responding strongly to the xeloda. So it was possibly a product of the cancer (both diffuse and in tumors), which has now been beaten back significantly, or the killing off of the cancer. Maybe the pockets of dead diffuse cancer cells look like cirrhosis? Or somehow bring it on?

    It hasn't progressed, but her ascites is coming back. They can see it on the mri, but can't get at it, to drain it, by paracentisis. She has upped the dosage of diuretics. Hopefully that helps.

  • s3k5
    s3k5 Member Posts: 411
    edited January 2022

    BAP, so glad to learn that you are NED. I am sure Husband will chime in soon.

    If your liver is not as enlarged, hopefully that means the liver is healing? How are your liver! enzymes? I haven't read much about cirrhosis so I have zero knowledge about it.


  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    I think my enzymes are stable at the moment. In the summer when I was hospitalized I was in failure. Then my liver turned around and got better. And the numbers dropped significantly. The pseudocirrhosis happens or happened in my case due to quick death of tumours when I was in Abraxane. It was mild at first but now the reports saying it has progressed since September and November. So pseudocirrhosis looks like scarring on the scan but without biopsy and labs saying true cirrhosis. It progresses faster than cirrhosis. I feel like if she had to mention it she would have discussed it further. But everything I read shows how negative , especially with portal hypertension and things like that, it can be to overall health. Like if it becomes all pseudocirrhotic what does that mean for me ?

    Ugh. If I’m not dodging the cancer , I’m dodiging that. Like why can’t I accept a good pet report of my NED status ? I guess bc I still feel the threat. And the ascites and such are a daily reminder of how bad the liver is

  • moth
    moth Member Posts: 3,293
    edited January 2022

    what excellent news B-A-P!

    Hope your team has a good strategy for the other liver stuff soon.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited January 2022

    It is good news B-A-P. I think we all know how hard it is not to keep looking over our shoulders to wonder what will come at us next.

    You do have me wondering about the psuedocirrhosis. I did have a report that mentioned capsular retraction which I take it was due to the receding liver mets following my success with Xeloda. Not sure if that signifies anything. My current worry is that it appears my right kidney has a blockage. MO did not say anything about it, likely because the way to deal with it is to get the liver mets back in the box. Hoping there isn't a stent in my future...

    But, let's celebrate the good news B-A-P. NED is awesome!

  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    Thanks Moth and Sadie. I think it’s cause I had the varicies bleeds , portal hypertension, blood flow going through other veins cause I’m so congested in the liver , ect ect that it just feels like a horrible thing. And the ascites is just that daily reminder. It’s uncomfy.
    i am going to ask her about it when I speak to her next (which is hopefully next week with my blood work results). I honestly don’t think there’s treatment for it. I think it is what it is but I’d love to ask about the Shunt and see if they can do that for me to help with the ascites (though I doubt they’ll let me especially with COVID on the go). I just hope she can give me more info than she did yesterday. She just spoke about it in generalities vs me specifically

    I also have capsular contraction.

    Hopefully no stent Sadie. No fun


    I’m bumming everyone around me out. I can’t change it at the moment so I have to be patient (though it’s not my strong suit ) .


    i also get my third COVID dose tmr and can’t take anything like Advil or Tylenol which is lame. Hope I don’t get hit too hard.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited January 2022

    BAP,

    Congratulations on getting to NED on Ibrance and Fulvestrant! I expect that your other issues will start to fade now that you don't have any visible cancerous lesions. Is your kidney blocked by kidney stones? I have a ton of kidney stones and have dealt with them for almost 20 years. If it's kidney stones they can zap them with ultrasound to break them up so you can pass them in your urine. Works amazingly well and doesn't hurt at all.

    Don't know anything about pseudocirrhosis. This is a brand new concept to me. In reading up about it, I can understand your concern. We are here for you and rooting for your recovery.

    Hugs, Susan

  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    thank Suzan !


    hoping the other stuff clears but I feel the pseudocirrhosis is likely the cause of the congestion and ascites with the portal hypertension. I think all the scarring is just making it difficult for blood to flow into the liver. My report said that my umbilical vein is recanalized meaning blood is flowing through there as an alternate route (the umbilical vein from my understanding stops being used after you’re no longer a fetus) .
    I knew I had the pseudocirrhosis but I was spooked when it said progressing from the last set of scans. So it’s interesting she didn’t touch on it more. Only said that it was great my liver had shrunk bc it was enlarged previously.

    And as you’re aware since you read up on it a bit , a lot of the info is quite negative. So I’m just perplexed by the lack of attention to it. So I will bring it up to her again even if it sounds like I’m beating a dead horse.
    I am also going to ask about the TIPS procedure to see if it can help the hypertension and fluid out better. I don’t thunk she’ll go for it , but worth an ask !

    Feeling quite overwhelmed it’s like it really is good news but that other stuff overshadows it a little ya know

  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    oh and Re: kidney stones. Yes ! I have had one in my left kidney for two years now. Only small and non obstructing so it just hangs out there. No other ones thankfully.

  • Cocogal
    Cocogal Member Posts: 25
    edited January 2022

    BAP,

    I don't have any experience with psuedochirrosis. I have 2 points, one there may be drugs/supplements to support your liver and maybe consult with a liver specialist, in addition to your MO.

    If it were me I would ask if reducing fibrosis would help. I have a dog with a severely small liver. Short version of her story, her liver values shot up, went to university vet school, and extensive tests revealed extremely small liver probably from some environmental trauma. They said her liver was about 2 inches, she's big, weighs around 65lb. They put her on a few supplements and 2 prescription drugs. One of the drugs is a human high blood pressure drug because it helps reduce fibrosis in her liver. They didn't think she would live very long, were given an estimate of 2 years, maybe. This occurred just before she was 3 and she is now 11. As we were told the liver could not grow back and the treatment was to optimize the functioning liver cells she had left. After a couple of years we trimmed her treatment to what seemed the most effective, still including the BP medication, and a couple of times when her liver values got scary she was given a drug short term to chelate the copper off of her liver.

    Comparing our dog's experience I hope hasn't seemed disrespectful in anyway.

    I remember how you had to advocate to try hormone therapy. Good job is an understatement with your results. Everyone will be rooting for you with this new issue.


  • bsandra
    bsandra Member Posts: 1,037
    edited January 2022

    Dear BAP, NED? Are you kidding me?!:) You really must be researched?:)D

    Regarding cirrhosis - it is just a word describing how the liver looks, and most probably it can be fibrosis (dead tumor tissue) with the rest of the liver functioning well and healing. I think now it is time for you to celebrate and hug your little one 1782455 times a day!

    Saulius

  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    hi coco gal , well first off I’m glad your dog’s treatment was successful. Our pets are truly family. I’m not offended at all by the comparison. You were merely just explaining a similar issue and the treatment. Even though I have low BP I am on nadadol for the portal hypertension (which is a bp med) . I take a really small dose bc my BP is so low. So that is hopefully supposed to help stabilize the liver tension.

    Salius! My cheerleader :) I’m hoping you’re right. When you read up on pseudocirrhosis the literature is not good . Combine that with my liver failure in the summer , portal hypertension, the fact my other veins are being used as a route to move the blood flow , ascites due to the scarring and hypertension, my liver is on a struggle bus. Oh, and my albumin has been in the lower side.
    Though as far as I know, my liver enzymes are doing okay at the moment. I’m not sure of the latest blood results but I know next week they are just doing a Cbc before my next cycle. So I imagine if there was an issue they’d follow up. Definitely happy that the ibrance had been working well and so fast. I was almost sent home on hospice but I begged them to let me try ibrance and we are all so elated we made the right decision.

  • ohionana1605
    ohionana1605 Member Posts: 67
    edited January 2022

    ladies with liver Mets: have you been told not to drink alcohol? We’re you told wine was ok? What about liquor? I like honey whiskey on ice but haven’t asked MO about that. He did say in beginning I could have glass of wine. I’m older than most of you and not going to go for aggressive treatment. To everything there is a season. my best to all of you. Thanks

  • moth
    moth Member Posts: 3,293
    edited January 2022

    OhioNana, my opinion is that we should avoid stressing the liver any more than we need. The mets themselves & the drugs we're all on to keep us alive - which all need to be processed by the liver - are enough work already. I won't have any alcohol because I do not want to make my liver work any harder than it has to.

    Alcohol is also a known carcinogen & imo it makes no sense for someone with a history of cancer or active cancer to be exposed to substance which can mess us up even more

    BUT there are a lot of people on this board who drink & so if you're looking for someone to tell you it's ok, you'll find them lol

    a teetotal cheers to you :)

  • elderberry
    elderberry Member Posts: 1,068
    edited January 2022

    OhioNana: While I agree with moth, I am guilty of allowing myself some alcohol. My MO when I asked didn't said flatly yes or no. When our hot water tank went and flooded the basement- followed a week later by the pipes bursting and flooding the basement again I am afraid I had more vodka than prudent. I am drawn in my horns since then. I am also an Old Fart and as long as my liver enzymes and Alkaline Phos. are in range I am going to have my weekend martini damn it.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    Ohionana...once a month my husband and i have wine and cheese I love wine. I am not going to deprive myself something I enjoy and something we enjoy together..cancer takes every thing else.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2022

    BAZp- sounds like your liver is like you. It’s found ways to cope with everything that has been thrown at it.

    My albumin is always low when they do my blood draws. I am told it is an indication of mslnutricisn. They kett we o and eye in it and I have consulted a nutritionist. The levels are still low but stable. Maybe this is the same in your case- it’s not an indication the liver is sick but maybe something you can correct by eating a certain good? I only mention it because that is what my team has focused on for me snd the rest of my liver values are good.

    I’m with Saulius- celebrate NED. I have all but given up on ever hearing that term. My new celebration comes when I’m told I am stable or I don’t have any numerous new brain Mets. Celebrate your victories.

    I appreciate that we are always waiting for the other shoe to drop: that’s one of the things I find sucks the most- always fearing what’s next. I try to do what I am asking you to do for yourself, celebrate, but get how hard tgat can be.

    Congratulations on NED. I hope that the other issues start to go away now that the cancer has been out in its place.

  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    Thanks Leftfootforward.
    You guys are right. I should be celebrating the victories despite some of the other things going on. I know my MO was elated and satisfied with the result and that’s what matters as well especially because things worked so fast.

    I’ve been feeling a lot of overwhelm lately especially With the rise of COVID and kids returning back to school. It just feels like I’m dodging death at every corner. Crazy I know. And the portal hypertension and ascites is tough to deal with. I’m just so tired but I’d literally do anything to live so I know I have to make friends with the crappy parts and continue to adjust to the new normal , whatever that means :)

    I’ll take the advice though and just try to live and appreciate the good things :)

  • Sunny1997
    Sunny1997 Member Posts: 18
    edited January 2022

    Hi B-A-P,

    Sounds like we’re in the same boat! I was just diagnosed with chemo induced cirrhosis, with esophageal varices, and ascites. I’ve had so much chemo over the last 25 years, and most recently Kadcyla the last 6 years. My spleen became enlarged a couple of years ago, and was struggling with low platelets, but never imagined it was because my liver was in trouble. I’ve been off the Kadcyla for 3 months now, after researching and waiting to be seen by a specialist.

    Since I’m stage IV, the plan was to stay on Kadcyla until it either stopped working, or side effects became intolerable. I’d certainly say this qualifies as intolerable!

    I’m waiting now for my oncologist to review my case with the tumor board, and see what my non chemo options are.

  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    Hi Sunny ,


    It’s crazy isn’t it ? My oncologist didn’t seem perturbed but the pseudocirrhosis at all because my labs are good. My platelets have been on the lower side but they’ve waxed and waned from normal to low. When I had the varicies bleeding , they of course kept dropping and they at the time , didn’t know why.
    25 years of chemo is a lot and our bodies take a hit. I haven’t had quite nearly as much as you and yet here I am with it

    Everyone in my circle has been saying “well if they aren’t worried , take it and run” and I’m trying to but when you see your cirrhosis progressing on scans and have the physical issues with it , it takes a little bit of the win out of it. You sacrifice one thing for the other.

    Hopefully you’ll get some answers soon and perhaps if you learn more you can share if you feel comfy with it.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    Sunny what were the symptoms of chemo induced cirrhosis?

  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    Nicole ,

    On my scans my liver has capsular contraction and increased nodularity around the contours and a “nutmeg appearance” . My liver is enlarged and I have portal hypertension, ascites and ended up with a near fatal esophageal varicies bleed. Usually with pseudocirrhosis/ chemo induced cirrhosis, you’ll see alot of the same things. I think the difference is that clinically on labs and biopsies , it will show negative for cirrhosis and fibrosis. In my case , I was in liver failure from it (I assume) but all my liver values have returned to normal, yet the scarring is getting worse. I don’t quite understand it much. I’m hoping to get some clarity when I speak to my MO next.

  • husband11
    husband11 Member Posts: 1,287
    edited January 2022

    Ditto on the above problems that BAP and Sunny1997 report, for my wife. Pseudocirrhosis, hepatic hypertension, varices, a bleed or two, and now some more ascites again. Maybe if the cancer lays low for long enough, the liver's blood vessels can adapt and find new routes?

    I think about our dear friend, who we never got to meet in person, KerryMac, who died while being treated for her liver mets. I believe her relatives said the chemo was killing the cancer, but it also killed her liver. Part of me wonders if they aren't too aggressive some times in treatment. If something works, it works, so why not let it take action slowly, so the liver isn't seeing the action as so toxic and can adapt and recover?

  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    agree Husband. I think in my case it was the quick dying off of Mets. When I had my recurrence I had extensive Mets all over the liver so I think the dying off created the scarring. But in saying that , my second line of treatment was Abraxane (which is known to cause the pseudocirrhosis) which is given on days 1,8,and 15 (which is a lot in my opinion). It has been said that there are people who die of their cancer and those who die from treatment related complications. I’m hoping not to fall into either group but I think it’s a bit of a gut punch to get an NED and yet still succumb due to complications of the toxic treatment itself

  • BevJen
    BevJen Member Posts: 2,341
    edited January 2022

    BAP, I have been reading your story and digesting it and now I'm starting to get more interested in what's going on with you and with others who have had pseudo cirrhosis. I had a CT last week and for the first time, it said this: "Pseudocirrhotic appearance to the liver with multiple hypoattenuating, treated lesions." Hmmm. I am wondering what that language means. I have a telehealth appointment with my MO next Tuesday and I'll try to find out her take on this but Husband's comments make a lot of sense.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited January 2022

    so BAP not sure I understand all the "words" you used...but you are saying that you had cirrhosis of the liver yet all your liver numbers Bilirubin, ALT , AST and ALK PHOS were all in normal range correct? So even when you were going into liver failure they were still normal or no, right? So I guess the cirrhosis gets worse over time from treatments correct?

  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    Bev, if you feel comfy sharing what your MO says Tuesday about it I’d love to hear that opinion. I’m going to ask mine in Thursday when she calls with my bloodwork results (least I’m going to try-sometimes we get rushed off the phone)

    Nicole- i had to look up a lot of the words too and I don’t fully understand either- just that my liver is looking really bumpy and scarred. When I was in liver failure my numbers were baaaad. Like trended upward everyday. My bilirubin got as high as 85, I was yellow , ast, alk phos, alt, all of it was elevated. Not sure how high they got but I initially sought help bc the numbers were going up every draw , and at the time they weren’t concerned until I went to the ER and my scans were showing what they thought was hepatotoxicity. Liver biopsy showed cancer and after the biopsy , my ascites blew up. Oh and during the biopsy they noticed my portal vein was completely blocked by a clot.

    Anyway I was at first started on inpatient chemo right away and my labs got worse. After a couple of days they told me I was dying and nothing more cancer wise they could do for me. My liver was failing. I also had peritonitis of my ascites. Then one night in hospital my BP dropped super low and I threw up massive amounts of blood —- I had a varicies bleed. I was told I was not going to make it but I was conscious enough to push for the icu (they were going to let me die). After I got out of icu, my liver numbers very slowly started to recover. After three more weeks my values were in range with my bilirubin still a little elevated at 23 (better than 85) and a week later but was 20.5 , then it went down to 6! MO said my current numbers are all in range Bili was at 12 last week (still normal ). They cannot explain how or why I recovered but they said they’ve never seen anything like it. I managed to convince them to try ibrance with me after they said no to everything. And I’m lucky I did since it’s working.
    The cirrhosis to me is concerning bc it’s progressing and I’m worried I’ll end up back in failure since I still have portal hypertension and ascites. I also worry about the bleeds (the last I checked I wasn’t going to be getting more scopes to monitor but I think I’m gonna to push for it ) .

    To answer your other question, pseudocirrhosis tends to progress much faster than true cirrhosis- atleast that’s what the literature is saying and it’s been true in my case. Every scan shows it’s worse.

  • BevJen
    BevJen Member Posts: 2,341
    edited January 2022

    BAP,

    Happy to share whatever I learn. Prior to Telehealth or regular appointments with my MO, I usually send her an email with all of my questions. Guess which is the first one this time? Pseudocirrhosis. I also linked her to a Pub Med article about this that says all of the things you've been saying. I gather that this is not so common, but it's out there. One interesting thing, in looking at your history, is that in 2018, you had a 5 FU drug. I am currently on xeloda, which converts to 5 FU in the body. From the article that I sent to her, linked below, it said that pseudo cirrhosis generally results from certain chemos, including 5 FU drugs (there are others, too.)

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3701853/


    I was on Ibrance/Faslodex for about 14-16 months until it looked like it was failing and then I went on keytruda as a single agent. While on I/F I was also on a proton pump inhibitor for gastric reflux. Now they are saying that PPIs can interfere with the action of I/F. WTF??? Article referenced below for anyone who is interested. So I don't know where I turn now. At my last appointment in late November, my doc was making noises about enhertu, but now I feel like I'd better do my own crosscheck on that before I go on it.

    https://pubmed.ncbi.nlm.nih.gov/34509802/


    You start to wonder if the cure is worse than the disease....

  • B-A-P
    B-A-P Member Posts: 409
    edited January 2022

    Bev,

    Yes! I had 5FU and Abraxane both of which can cause the Pseudocirrhosis . My liver was fine until the Abraxane but my hypothesis is that I had such diffuse and extensive Mets that they died off really quickly causing the pseudocirrhosis as well. Atleast what I read says that’s a possibility .

    As for the ppi , I’m on one twice a day due to the varicies bleed I had and it’s been working for me. I did speak to the oncology pharmacist and she said thst was more of an issue with the capsule and part of the reason why they suggested taking it with food. With the tablet now , there seems to be no interference and some studies to confirm. In my case the ppi is not affecting the effectiveness of the treatment. But still if you were on the capsule and a ppi , I’d wonder if the treatment was stopped prematurely due to them thinking it was a failure vs interference with a ppi

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