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Please be straight with me: How bad does this sound to you?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I know many of you are caregivers and have some experience with liver failure & distress. I have been fighting a Grade 3 rare recurrent uterine cancer for 3 years that metasticized to my liver in November of 2010. I also have quite a few malignant lymph nodes here & there, but it's my liver that has been diligently trying to kill me. I had radioembolization this summer June 1 (right side) and August 26 (left side) & early indicators note a "remarkable improvement" in my liver tumors.

So why am I now having all these horrible symptoms? & how much trouble am I in? Could I be heading down a dark road that I may not be able to survive? Here's my stats:

My bilirubin is 4.8; Alkaline Phosphates is 263; AST is 109; albumin 3.0; platelets 75. Scarier than those numbers: my eyeballs are yellow-ish, and I gained 7 pounds in ascites fluid in the past week. (They have me on 2 water pills, 80 mg total a day.) I have the classic chalky-colored stool and bright orange urine.

I had an abdominal ultrasound last week that showed that all of my blood vessels and arteries, etc. in and near my lover are open and normal. The only thing they saw was that my gall bladder had thick walls and was 'sludgy'. It also showed that my bile duct is NOT blocked & not constricted by a tumor or anything. That must mean that the bile I need for digestion is being held up in the liver, & I'm not sure there is a way to get it out of there. Thursday I'm to have new blood labs and an endoscopic ultrasound.

I read all the dire things that can/will happen if we can't get my bilrubin back down: kidney failure, liver failure. Please be straight with me; I am a big girl. Does this look like I might be a short-timer?

northa914
Posts: 90
Joined: Mar 2011

Have you asked your cancer team for their honest opinion about what may be occurring in your body? Not that they can tell you for sure what it is, but knowing what they are and aren't looking is better than being left in the dark. They are still looking to find the problem, so they haven't thrown in the towel and neither should you! I wish there was more I could say to help. I'm a cancer sufferer (stage IV cholangiocarcinoma) and was diagnosed in June 2010. My liver had multiple lesions, two of which were quite large, and was of primary concern. At that time my alkaline phosphatase was 129, my AST was 196, and my ALT was 102. My platelets, bilirubin and albumin were normal. Since that time, my liver function counts are all normal and I’m doing a lot better than predicted. I’m not out of the woods yet, but my doctors haven’t used up the entire bag of tricks, and it sounds like your doctors haven’t either! Your numbers and physical status indicate there’s a problem; press your doctors for answers and make them hurry up and get the necessary procedures done STAT!!! Please keep us posted. I’ll be sending positive thoughts your way!

Livingbyfaith's picture
Livingbyfaith
Posts: 56
Joined: Sep 2007

My husband had a stent put in to open the bile duct I think it was, outpatient procedure, it clogged once and he almost died went septic. But now he is doing well and stent replacement scheduled again the first of November. If its backing up something must be clogging it, they took him immediately to emergency when his eyes started turning yellow. Go to the emergency room if you must. Will be praying. I never ask for bad news, always look for positive. Your liver numbers are slightly high and with yellow eyes I think you need to go back to the hospital. Pray for wisdom for the doctors. Maybe a second opinion. Good book "From incurable to incredible" about success stories for cancer. I will pray for you and your doctors also.

agt_dht
Posts: 15
Joined: Feb 2011

My husband showed about the same level of bilirubin as you last March and was sent home from an ER after an ultrasound showed no problem in his bile duct, but they didn't call in the GI specialist who was supposed to evaluate him that night, and he had an ERCP to clean out his bile duct stent a few days later. Like you, he had no visible obstruction, but there was some sludge in the duct that hadn't shown up on that ultrasound, and it was obviously causing the bilirubin problem since it dropped to normal within a week (and it was up in the double digits by the time he had the ERCP). If you haven't had a GI specialist's evaluation (one who performs ERCPs), get one ASAP. Maybe that's who's doing your endoscopic ultrasound, and that's the next step - sometimes they don't disclose what's next until you get there, as you probably know. Don't underestimate the value of a bile duct stent - my husband has two and it has definitely bought him additional time. He tolerated their placement extremely well, except for weakness from the fasting beforehand - it's an amazing help for this kind of complication.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Thank you all so much for your input. Tomorrow I will get labs, see my oncologist, & then have an endoscopic ultrasound. Even if the gastro folks feel I need a stent placed (which the gastroenterologist feels unlikely based on my abdominal ultrasound), they will do that as a separqate procedure another day. This is so frustrating for me, but that's how they do it: look, confer, then act. I am trying to be patient. But I feel these delays are very dangerous for me.

It has been 6 days since I had my bilirubin, albumen, & liver studies checked, so I am more nervous about those lab results than about the endoscopy. I have a long list of questions for my oncologist so that I can better understand WHO is going to take all of these scans, compare them, and make a treatment decision. I'll let you all know how I make out, since you have all been so helpful.

AEI
Posts: 16
Joined: Mar 2011

I am glad they are getting on it, although it not as quick as you would like. I understand. My husband was just released from the hospital after spending the weekend in ICU due to bleeding esophogeal varices ( probably attributed to portal vein thrombosis) and an elevated bilirubin which was the result of a bile duct blockage. After he was stable from the bleeding and the endoscopy, the did a CT and immediately after that they performed the ERCP to put the stent in. We are now hoping the bilirubin will continue to drop since there is some concern about the tumor effecting the biliary tract ( does anyone know what is reasonable timewise?) We wish you the )best and hope that they get things figured out for you quickly. Keep hanging tough, you'll be in our prayers along with everyone else in this fight.

agt_dht
Posts: 15
Joined: Feb 2011

Each time my husband has had an ERCP the amount of time it's taken for the bilirubin to drop has differed. The first time it was normal about 3-4 days later, and with the second and third procedures it took a good two weeks, I think, before we thought the jaundice had resolved completely. If the jaundice is fading and not increasing it's assumed the stent is doing its work - I know the hope is for that 3-4 day type of result, but our experience is that it can take longer

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I have liver failure. All of those scans and tests showed no blackages anywhere, nothing 'fixable' anywhere. The good parts of my liver just haven't stepped up and picked up the work load of the bad parts of my liver we so successfully attacked with the radioembolism this summer. Although my RBC, WBC, even platelets are all good and my vital signs excellent, my oncologist believes that additional treatment now would shorten my life and destroy the good quality of life I can still enjoy if I step away from the battle now. My liver test numbers are horrible, and bilirubin over 8 now. My eyes are slightly yellow with jaundice and I've gained 5 pounds with the ascites which feels HUGE to me, but apparently is considered a small amount still by my team. (We will do sonogram-guided parasentesis is I get really uncomfortable and I am taking 2 water pills daily to help with it.) I got opinions from a liver specialist and the doctor who did my radioembolism and everyone agreed. My acites sample had lots of malignant cells in it, so even if my liver kicks in I would still have new cancer to deal with. I've decided that palliative medicine can be a strategy, too, to staying alive as long as you can. I'm drinking 4 cans daily of Replete ($10/day!!) and eat whenever I have any appetite and WORK at that. I am consciously trying to make the most of every day and do a little work in the garden when it's sunny.

I met with palliative medicine yesterday and hospice is coming out tomorrow so that we can have an established relationship when the time comes that I need them. Palliative Care has already set me up on a pain management regime and bowel management regime. I never took painkillers the 3 years I've had cancer, and I am surprised to see how they can make it possible for me to do MORE, and have more fun, since I don't have the constant discomfort. I don't think of myself as in pain, just uncomfortable, but when I take those Oxicodone all that melts away. I learned something here.

I've always said I'd go down swinging, fighting it until the end, as I'm sure so many of you have. But when it doesn't make sense, choosing to conserve the beauty of the time you have left can be just as brave a choice. I hope you all can respect that. Please keep me in your prayers.

northa914
Posts: 90
Joined: Mar 2011

You will definitely be in my thoughts and prayers! Words can’t describe how horrible I feel about your condition and the difficult choice you’ve been forced to make. Please keep us posted when you’re up to it, you are a bright spot on this site and we’re here for you! And you ARE still fighting, fighting to live the best life that you can in spite of this dreaded disease. The fight has to do what’s right for us as individuals, and you by no means have given in. Please feel free to email me at andreanorth@loopmastersinc.com if you need someone to chat with privately or to lean on. I’ll support you in any way I can. Big hugs for you, Linda! Stay strong!

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Linda Procopio passed away on November 15th from liver failure secondary to stage IV uterine (UPSC) cancer. We miss her wisdom & zest for living life to the fullest.

I don't know if she would have survived any longer if she had not opted to have the radioembolism therapy for mets to her liver but she seemed to have limited options and fought the best fight she could.

slg
Posts: 200
Joined: Jan 2010

So sorry to hear that Linda lost her fight.

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

So sorry to hear about Linda's passing. She fought bravely for her life as far as she could. May she now be in the peaceful arms of our Lord.

northa914
Posts: 90
Joined: Mar 2011

Linda was truly was an inspiration. Her positive spirit and attitude were always uplifting. She will me missed.

Angel322
Posts: 26
Joined: Mar 2011

that Linda lost her life. She was truly an inspiration to me and so many others on this site. She was so brave and positive, always upbeat no matter what the docs said, she was an amazing lady. She taught us all so much. This site has lost a dear friend. :(

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