End of life question about bilirubin

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
jgall
Posts: 814
Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

End of life question about bilirubin

Postby jgall » Mon Jul 13, 2015 5:23 pm

For those that have seen this through to the end with their loved one, I have a question. DH is in hospice and declining moderately right now. He's on a significant amount of pain killers and sleeps a fair amount now but is still alert and mildly active as he can be (like moving from couch to chair to bed to balcony etc...) and he even still takes the dog out once a day for a very short walk.

Last week he had blood draw when we saw his onc. His bilirubin was slightly elevated, but the two weeks before that it was well in normal range. Additionally I noticed his skin was a little yellow. Now, five days later, I'm noticing it more and his eyes are starting to yellow too. Our onc said unless there are any severe side effects, we'll just let it be - no point really in treating it unless it causes major discomfort. Ok, that makes sense.

I have two questions.

1. What sort of side effects did any of your loved ones deal with tat were what you'd consider serious and how was it treated?

2. How long did your loved one live on after these symptoms appeared. I'm trying to understand if this is a serious issue that could bring about the end, or is it just something that accompanies the end?

Thanks all
Julia
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

janklo
Posts: 1567
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: End of life question about bilirubin

Postby janklo » Mon Jul 13, 2015 6:49 pm

My daughter was on hospice care at our home for about 10 days. The pain was very manageable with dilaudid. However on the 11th day, her body chemistry started getting messed up and she no longer made sense. She also pulled out her catheter and ng tube a couple times. Hospice sedated her with Ativan and she spent the last week in the hospital sedated. If she wasn't sedated, she would have hurt herself by trying to get up or ripped out her picc line. It's not the way any of us would choose but it's what happened. I don't know if everyone's mind goes like that.
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

User avatar
jgall
Posts: 814
Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

Re: End of life question about bilirubin

Postby jgall » Mon Jul 13, 2015 6:56 pm

Thanks for the response, Janet. Was her issues caused by high bilirubin, or was that just your experience in general without knowing what the specific cause of her confusion was?
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

User avatar
CRguy
Posts: 10035
Joined: Sun Feb 10, 2008 6:00 pm

Re: End of life question about bilirubin

Postby CRguy » Mon Jul 13, 2015 7:41 pm

I will jump in here more as a vet than caregiver ( my Dad did not have liver issues ).

Hepatic encephalopathy is a term to describe mental/CNS/ brain issues caused by increasing levels of toxins in the blood which the liver would "normally" detoxify , process and pass through the blood for kidney (urinary) and GIT (fecal) elimination. If the levels build up, we get the toxic effects.

I would suspect that is what you two dear friends here are talking about.
The actual "yellowing" = jaundice..... is a direct effect of the bilirubin increase in the blood and the fact it is not being metabolized and excreted ... for any of a number of reasons.

Bilirubin is itself directly toxic but there are also other metabolites which build up in liver failure which are also toxic ( e.g. ammonia levels ) and they all will affect mental status.

...AND we have to remember that the liver is the main metabolic engine in the body, SO if it is not working normally ... any and all medications which need to be processed there may not be metabolized or excreted properly and will also produce toxic and/or "side" effects of their own.

Sending Love Peace and Harmony
let me know if there is more I could do to help ?

CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: End of life question about bilirubin

Postby LeonW » Mon Jul 13, 2015 7:55 pm

jgall wrote:Was her issues caused by high bilirubin, or was that just your experience in general ?


Julia, bilirubin levels will shoot up when liver isn't working properly and may well lead to toxic build up of ammonia /cause delirium with the effects that jankio describes. Experienced his myself when the (little) remaining part of my liver had difficulty coping after resection, almost 2 years ago now.

When that happens, one's mind mixes reality with dreams which can cause very scary hallucinations. You may want to post a few largish pictures of yourself, kids, other dear ones around the bed. My DW knew about this from her work in hospice and I still remember how these made me feel somewhat safer, despite my frenzy mind. Also try to avoid surprises and ask that all caretakers mention their names and explain what they are up to, every time they deal with your husband. It may help.

Best wishes and that you may find the strength you need these remaining days
Leon
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Aug - 1x Xelox-7x Xelox/Avastin (neo adjuv), shrinkage from #3
Sept - 2x PV embolization (both failed)
Oct 2013 - R liver resect, 28d hosp (liver failure/delirium, lung emboli, encephalopathy), cancer dead (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town, new life
June 2018 - 5 yr mark, scopy: 2 polyps
1.3-1.4 CEA/clean CTs: 4x2014, 6x2015-17, 2x2018-19 :D, next June 2020

janklo
Posts: 1567
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: End of life question about bilirubin

Postby janklo » Mon Jul 13, 2015 8:09 pm

I just knew it had to do with ammonia--great explanation CRGuy. I never knew that could happen so it was surprising.
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

Val*pal
Posts: 860
Joined: Sun Feb 10, 2013 1:24 pm
Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: End of life question about bilirubin

Postby Val*pal » Mon Jul 13, 2015 10:58 pm

I'm sure every case is different, but my husband's liver started showing some signs of failure about 3-4 weeks before he passed. The oncologist simply said that his liver function appeared to be off a bit, and we didn't ask any other questions. Within 5 days from that last oncologist appointment, my husband started in-home hospice. At first he was able to get about the house a bit, though the effort exhausted him. Stair climbing immediately became too taxing. Soon he was only able to walk to the bathroom, and that was with a lot of assistance. Then, about 7-10 days later, he really couldn't move on his own any more without falling, and he began to sleep more. About 4 days before he died, the hospice nurse noted that his skin and eyes were yellowing, though I honestly couldn't really detect it. He never experienced any hallucinations or disorientation until the last few hours and those hallucinations may or may not have been from the high doses of morphine he was administered. His urine became more and more concentrated about 5 days before he passed, and I knew that meant his kidneys were shutting down. For his last two weeks, he ate almost nothing, but he did try to drink some Ensure now and then. Sometimes he just wanted to chew a bit of food to "taste" it, then he'd have to spit it out. He kept up his water intake, which was good, but I doubt he took in more than 30 ounces a day. Amazingly, he kept in good spirits. I do recall that five days before he passed, he told me one night that he suddenly felt "different". I asked him what he meant, but he said it was too hard to describe. I've always wondered what he meant. He did experience vision problems in the last 10 days.

As many other caregivers have noted, my husband's death came much more quickly than I anticipated. Though I knew he only had a few more days, he died quite unexpectedly - at least I found it unexpected. Happily, he experienced almost no pain. His discomfort in his last hours was due to unrelenting vomiting of a black substance, but the morphine eventually stopped that. Essentially, he just eased out very quietly and peacefully. One of the nurses commented that his was one of the most peaceful passings she had witnessed.

You and your husband are in my thoughts.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

User avatar
DK37
Posts: 510
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: End of life question about bilirubin

Postby DK37 » Tue Jul 14, 2015 10:20 am

Dear Julia,

My Mom (who had pancreatic cancer not CRC but died pretty young - 55) was in Hospice for about 2 weeks before she passed. I think we waited a bit longer into the dying process to call Hospice than your DH. In the weeks leading up to starting hospice would could see the rate she was declining per day so we had a pretty good idea when her life would end (we were right to within a few days). Her hospice team was fantastic. They kept her comfortable 24/7 (at home) and communicated clearly to me & my sister signs and what to expect (they had witnessed many deaths...). The first week in hospice care she was largely bed-ridden and barely eating ensure. The second week, over a number of days, her organs started to shut-down (Hospice walked us through that process), she no longer ate and she was in a coma the final 5 days or so. We played her favorite music on repeat while she was in a coma and we talked to her. Small stuff + everyone had a chance for alone time to say anything they felt they really wanted to say to her before it was too late. Even though she was in a coma and couldn't move/open her eyes, I saw her eyes tear up a couple of times while I talked to her so I am convinced at least some of the time she could hear & understand us. There are tell-tale signs hospice looks for for the final 24 hours and final 1-2 hours. At the moment of her passing, after being in a coma for almost a week, Mom started to sit up and held out her hand like she was grabbing someone else's hand in mid-air to hold. She then took her last breath. Childbirth and death are the most powerful moment's to witness in a person's life. You never forget either.

Take care during this rough time Big Sis,
Tom
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

User avatar
trapbear
Posts: 74
Joined: Mon May 10, 2010 12:53 pm
Facebook Username: bill manning

Re: End of life question about bilirubin

Postby trapbear » Tue Jul 14, 2015 11:12 am

Hi Julia,
So sorry you are going through this, I was in your shoes last summer so I know how hard this is. My DH started having yellow eyes a few days before he passed. He also started running a high fever (104-5) the last two days and had swollen legs since his liver was no longer producing albumin. Luckily I was able to keep him comfortable (morphine drip) and dilaudid for breakthrough agitation. Sending you love and strong thoughts from California. Hang in there and treasure every moment....
Husband Dx with Stage 3 CC in Dec 07
Xelox Jan-July 08
Lung mets Jan 09
Folfiri plus Avastin Mar-May 10
5FU plus Avastin May 10-current
2 liver mets March 13, continue 5 FU & Avastin
liver RFA Oct 13, hospice June 14, at peace Sept 2, 2014

User avatar
exaussie
Posts: 618
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
Contact:

Re: End of life question about bilirubin

Postby exaussie » Tue Jul 14, 2015 11:42 am

It is very individual. My son had elevated bilirubin up around the 15-25 range for weeks. His skin and eyes were yellow. His liver numbers were normal on July 14 but at 13 2 weeks later. He was on morphine and lots of oxy pills. We switched to morphine pump, every time we tried to wean him off of it and give pills it didn't work. He was not digesting the pills.
So sorry you are going through this. Its been a rough week for me because of it being exactly a year ago we were going down this path. He did well on pain management with morphine.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

bitchslapped
Posts: 1525
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: End of life question about bilirubin

Postby bitchslapped » Tue Jul 14, 2015 1:12 pm

Julia, My DH had excessively elevated bilirubin for over 2.5 yrs, yellow eyes, muddy skin. I'm talking double digits during that time up to 33 to which he lived another 8 months. At this point, I don't think it is a cause of concern, however I understand that to you this is a big change. Just realize that you will be noticing every little change that takes place & so difficult to watch & accept these things as part of our exit plan.

CRguy wrote:...AND we have to remember that the liver is the main metabolic engine in the body, SO if it is not working normally ... any and all medications which need to be processed there may not be metabolized or excreted properly and will also produce toxic and/or "side" effects of their own.



So true. The liver is the "clearing house" for everything in the body. My DH's liver was only able to metabolize approx 10% of pain meds the last few months. Similar to DK's DM, coma the last four days preceded death.

This is so tough. Just know we are here for you.
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

User avatar
surfingon
Posts: 448
Joined: Mon Dec 28, 2009 4:11 pm

Re: End of life question about bilirubin

Postby surfingon » Tue Jul 14, 2015 3:42 pm

Dear Julia,

My husband had a severely compromised liver at the end, so I did a lot of research on how that might play out for him.. CR Guy covered the explanation very concisely.

Delirium is one of the common manifestations of hepatic insufficiency. It may not even happen to your husband in his particular circumstances. But for us (and I suspect this is true for most), mental clarity was highest priority. The first time I observed the subtle signs of disorganized thinking and personality changes in my DH, it was a huge comfort to me to know that there was a simple solution: a tablespoon or two of a simple sugar syrup called Lactulose draws the accumulated ammonia into the bowels, where it is excreted. Results were amazing and came very quickly in the form of restored clarity.

This is NOT a cure, but it can provide treasured clarity-- if it is ammonia that is causing the delirium. There is one side effect which was a real obstacle to convincing DH to take it: diarrhea. To me, it wasn't that much of a price to pay. We resorted to Lactulose many times before John died, and it worked every time.

Just another tool to keep in your back mental pocket, just in case...

May you both be free of suffering,
Rachel
caregiver to husband John
Stage III CC 3-05
liver+ colon resect Nov '06
FolfoxA , FolfiriA
7 liver RFA's, 1 lung RFA
died April 29, 2009
http://sheddinglightonthecancerjourney.wordpress.com/
http://sheddinglightonthewidowsjourney.wordpress.com

User avatar
Kathleen808
Posts: 1761
Joined: Sun Feb 08, 2009 12:49 am
Location: Hawaii

Re: End of life question about bilirubin

Postby Kathleen808 » Wed Jul 15, 2015 1:07 am

Sending you much love my friend.

Aloha,
Kathleen
Kathleen
DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace

User avatar
jgall
Posts: 814
Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

Re: End of life question about bilirubin

Postby jgall » Wed Jul 15, 2015 8:00 am

Thank you, everyone, for your thoughtful responses. They are so helpful!

We are hanging in there. It's a revolving door of family visitors right now as all of our family lives in other states. I'm glad he's able (barely) to do this so he can say good bye to them all. It is definitely getting more taxing each day, and I am starting to see some other changes such as some mild confusion on some things here and there.

Keep on keepin' on!
Julia
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

pfCml73183
Posts: 653
Joined: Sat Jun 22, 2013 7:49 pm
Facebook Username: Celeste Marie Comeau
Location: FL

Re: End of life question about bilirubin

Postby pfCml73183 » Wed Jul 15, 2015 3:00 pm

Keep up your strength, Julia. I know how trying these last days can be. My thoughts and prayers are with you both.
Celeste
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 20 guests

cron