Topic: Stage IV - Bile duct/liver/lymph nodes

I just joined this site and am looking for some feedback.

My dad was diagnosed about 8 weeks ago with a klatskin tumor that is on the liver and the lymph nodes.  No surgery option.  We were told chemo would prolong lofe 6-12 months.

He had plastic stents put in in November and Metal stents in December.  After 6 weeks, the jaundice is still not any better and the itching has begun.
They have not started chemo b/c of the jaundice.

Anyone ever been in this situation?

He seems to be shutting down and the doctors don't say anything.

Re: Stage IV - Bile duct/liver/lymph nodes

The only thing I can think is that the stents are clogged. Did they do any type of treatment such as photo dynamic therapy or radiation when they placed his stents?
My husband had the exact same thing and it was because the stents were clogged. If your Drs. won't help you, get another opinion. good luck,
Charlene

Re: Stage IV - Bile duct/liver/lymph nodes

I agree with Charlene.  Each time my husband got jandiced it was because the stents had become blocked.  In fact the Dr. told me to watch for any yellowing of his eyes which means jaudice and a good possibility of blocked stent(s).
Irene (Bob's wife)

Re: Stage IV - Bile duct/liver/lymph nodes

Thanks so much for your replies.

He had a drain put in that is helping and he might get some chemo finally.

I am afraid he is getting worse fast.

Can anyone share the progression and what has happened with a loved one?

Re: Stage IV - Bile duct/liver/lymph nodes

I'm so sorry you're going through this, and I just wanted to chime in that the progression of this disease is very unpredictable, so don't get discouraged by some of the stories of fast progression (like my mother's) - everyone is different and the doctors really don't have a clue sometimes, so don't give up hope. What are your dad's symptoms now, and why do you think he's getting worse?

A second opinion may also be of help, if your dad is up for it. Many people on this board beat the odds - or at least prolong their lives substantially - after getting a 2nd opinion.

I'm not an expert on cc, so maybe someone can correct me on this, but it seems that Klatskins tumors have a better prognosis than most. Again, I could be wrong, but that's the impression I've gotten.

Much luck and love to you and your dad,

Joyce

Re: Stage IV - Bile duct/liver/lymph nodes

Does the live chat work on this?  When I go to it, i am the only person there...

Re: Stage IV - Bile duct/liver/lymph nodes

I guess I'm too technologically challenged but I'll attempt to meet you there now, if you'd like!
-Joyce

Re: Stage IV - Bile duct/liver/lymph nodes

Hi - sorry I don't have much to offer, but other people's experiences may help you a bit, may be more similar to your dad's. Robynhar offered to share her experiences of the end of her husband's life, and I shared emails with someone about that too, because I'm the kind of person who NEEDS to know these things. So if you think it would be too upsetting for everyone to read, ask people on this board to email you personally about the end-of-life experience with cc and what signs/symptoms there are. It's tough to figure all this out alone, and the doctors are no help.

Best of luck,
Joyce

Re: Stage IV - Bile duct/liver/lymph nodes

Don't give up. My husband has been fighting this for 3 years now and there are people on here who have been doing it for 8 years.

If you can get his Bili down he can fight this. My Husband had Photo dynamic therapy first to kill the Klatskins tumor then he had internal radiation. Both treatments are not that harsh and I believe they are why he is still around.
Where do you live? Our Dr. is in Los Angeles.  He saved John! He was so yellow that the whites of his eyes were BROWN!!
Please if I can help you in any way email me.
I'm pretty good finding info on the internet.
Good luck and remember time is of the essence!
Charlene

Re: Stage IV - Bile duct/liver/lymph nodes

Thanks Charlene...

Can you let me know the name of the doctor and the hospital?

What stage was he in?  Had the cancer spread?

Re: Stage IV - Bile duct/liver/lymph nodes

What a roller coaster!

Dad went from losing 10 lbs. in one week and not eating or drinking to only losing 2 lbs. the next week.  I think the pain meds are starting to feel good b/c he is talking more.

I am looking for anyone with an experience like mine to let me know the downfall...

Re: Stage IV - Bile duct/liver/lymph nodes

dzkh
Have you gotten a second and third opinion on surgery?  Klatskins can sometimes be surgically removed, there are a number of us here who have had it done, but you have to find a surgeon who has the experience to do it.  Not everyone is fortunate enough to have this option but as it is the best hope for quality and longevity of life it should be pursued.
Try a search at the top of this screen on 'second opinion' and you'll find a lot of information.
-Peter

Re: Stage IV - Bile duct/liver/lymph nodes

My sister's itching didn't stop when a first stent was put in. It was only when they put in a biliary catheter that the terrible itching stopped and her billi started to go down. Even if one dr. said it's not operable, go for another opinion, preferably to a large teaching hospital type of place. I don't know where you are, but in NY, Boston, Mayo Clinic, Pittsburgh, UCLA they have drs who know Klatskin's well. It is a rare type so if you are in a typical small city type of hospital they're going to throw up their arms. Try to first get your dad stabilized (catheter or stents that work) and then work for a really informed prognosis.

Re: Stage IV - Bile duct/liver/lymph nodes

Well,  we just  learned that a 10 month course of Gemzar, which my husband tolerated so well and has kept his CC in check, has  ceased to be effective. He now has 3 tumours in his liver which had been clear, totally normal.  He is to start Oxaliplatin............seems to be a rough chemo drug from what I've read of it but has anyone done well on it??? Has it held anyone's cancer in check and is it worth the side effects?  Any help on this would be greatly appreciated! Thanks! Leslie

Re: Stage IV - Bile duct/liver/lymph nodes

My dad passed away peacefully at home on Monday, March 24th, 2008.  He was diagnosed on November 14, 2008.

Thank you all for sharing your stories and I continue to pray for all familes battling cancer.

God Bless,

Kelly

Re: Stage IV - Bile duct/liver/lymph nodes

Kelly.... My deepest heart felt sympathy and condolences.  It saddens me so much when I see this disease take someone so quickly.  I hope the pain medications allowed a peaceful passing.  May your Dad rest in peace now and for eternity.

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Stage IV - Bile duct/liver/lymph nodes

My heartfeft consolences to you and your family Kelly.  It is horrible how quickly this disease can work.  The knowledge that he is no longer suffering or in pain may help ease your grieving process.  Remember the good times.

Karen

Wishing all God's blessings!

Re: Stage IV - Bile duct/liver/lymph nodes

for the liver tumor, havs your oncologist sugessted sirspheres or theraspheres radiation?   It has already shrunk my tumor AND killed off a great part of it!  My tumor spills out on to the liver form my bile duct- i hope that the radiation will spread into the bile duct!  Ask the oncologist or go to www.y90support.org-

becky
blessed are those that are cracked,
for they let in the light!

Re: Stage IV - Bile duct/liver/lymph nodes

Kelly,
My sincere heartfelt condolences to you and your family. Unfortunately there are many here who understand what you are going through, so if you need help and support, we are all here for you.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Stage IV - Bile duct/liver/lymph nodes

Hi Kelly,

My husband passed away from CC on the 15th February after being diagnosed late November last year.  It is a terrible disease with virtually no symptoms until it is too late.

I will be thinking of you and your family.

Jenny

Re: Stage IV - Bile duct/liver/lymph nodes

Dear Kelly,
I just saw your post and would like to extend my sympathies, also. We're here if you need to talk- it's so hard to lose someone you love. May you find some peace
Joyce