Topic: Newly diagnosed from Brunei - South East Asia

Hi,

My mom 77 years of age has been diagnosed with intrahepatic bile duct cancer about a month ago. The cause of it is partly due to her enlarged gallstone, her bile duct was blocked.  She is suffering the symptoms of chills, fever, loss of appetite and weight.  Jaundice has occurred twice ever since then.  Saddest thing I witness is my mom's will to fight the disease.  The doctor here in Brunei has said that a recission surgery is out of the question, moreso a chemo wouldn't be helpful.

I am adamant that my mom has more years to live, rather than we sit and wait for the time to come, according to the doctor - 6 - 12 months of survivability rate.  I have come to terms that the risk is high, but I am sure out there, in this part of our world there is a specialist who would offer a ray of hope.

I would like to take this opportunity to introduce myself to the group and hopefully, some of you out there can help me guide me and my family through this ordeal, both psychologically and emotionally.  Our aim is to nurse back her strength, so that we can make the decision to send her for a recission treatment and chemo if possible.

I came across this forum I guess it would help me and my family learn and share knowledge from the people who are suffering from cholangiocarcinoma.  I know it is hard for those who are suffering and those whose loved ones are suffering.  I believe having a group discussion here would help and contribute. 

I am glad that I have found this group.

Thank you.

2 (edited by JeffG Sun, 11 May 2008 18:06:06)

Re: Newly diagnosed from Brunei - South East Asia

Hi Joel,  Sorry to hear about your Mom.  The only advice I can share with you is get a second or third opinion as so doctors just don't see the big picture or have the same level of experience with this cancer.  No your mom won't have an appetite as long as she is becoming juandice on and off.  The first thing that needs to be done is surgical intervention if medically possible.  She has to have the gallbladder removed and her bile ducts opened if possible for your mom to stabalized and make some head way to surviving longer.  Did the doctors consider stent placements ,or drains, or depending on location possible whipple procedure which is very extensive operation. There are so many variables Joel.  BUT NUMBER ONE THING is get a good evaluation by a doctor who is really familar with BDC. I'm so sorry your Mom is going through this.  I wish her and you the best and sending a prayer of support your way.  For nutrition try getting her to drink ENSURE or CARNATION nutritional drinks. or something similar.
God Bless,
Jeff G.

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

Re: Newly diagnosed from Brunei - South East Asia

Joel,  I also agree with Jeff..I would think at least the same as I initially had were several ERCPs with stent placement to keep the bile ducts open and they did remove my gallbladder as well all before the cancer was confirmed.   I know my jaundice went away as long as my bile duct was still open.  I would bet your mom would feel better and have a better appetite as well.  Please know I am not an expert on cc but I am a survivor!  Keep your family in my prayers, deb

Re: Newly diagnosed from Brunei - South East Asia

Thank you Deb, Jeff.

We've done all we could to keep mum comfortable.  Today seeing her suffer, it hurts me so much that I couldn't consume my anger for all the people around who are illiterate of the situation.  I have never experienced something like this before.  Therefore I would like to share my experiences with those who are newly diagnosed.

A) Treat it immediately.  No matter what the doctor says, get 2nd, 3rd, 4th, 5th etc., opinion immediately.  Do not wait.  As soon as one sends a reply take it.  You never know what could be done to help!

B) In this part of the world where I come from, send the patient off to a better medical facility - IMMEDIATELY!

C) TLC!!!! TENDER LOVING CARE!!! Having cholangiocarcinoma isn't a good thing.  When all things fails, septic attacks happens!  The patient is the one that suffers the most!  A bit of TENDER LOVING CARE goes a long way to help one.

5 (edited by JeffG Sat, 24 May 2008 13:51:44)

Re: Newly diagnosed from Brunei - South East Asia

Joel ... I am so so sorry to hear that your Mum is having such a suffering bad time.  I can relate to the anger of those people who don't know their head from their A--.  I and others on this site will agree with you 100% with what you have shared and continously preach exactly what you have said.  One thing to remember Joel, is this type of cancer is so much unpredictable and can catch people off guard in a heart beat.  Even on this side of the world even the best of doctors and centers can't help.  It really depends on how quickly it is discovered, where it is located, and how quickly appropriate intervention takes place.  I would at least think pain management can be applied to make your Mum comfortable.  Also appropriate drains and monitoring for infections.  Joel my heart goes out to you and your Mum!  Remember not to beat yourself up as it is not your fault!  This disease can take our loved ones away so quickly or linger on for years battling it.  We can only do what his humanly possible my friend.  TENDER LOVING CARE as you said goes a long way.  Many times we find ourselves with that one and only option.  God's Speed my friend and don't hesitate to vent anytime you wish.  For you and your Mum ... You will never be alone as long as God lives in your heart.....which is obvious in your situation. Yes it hurts and angers us all to an extent.  Joel please do update us if you wish and if there is anything at all that we can suggest to make your Mum more comfortable we 'll be here!
God Bless,
Jeff G.

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

Re: Newly diagnosed from Brunei - South East Asia

Joel, very sorry to hear about your mum. Hope some doctor wakes up and at least can give her a stent, by ERCP or other way. That would release the suffering very much. Wish you all the strength you need.
Iris.

Re: Newly diagnosed from Brunei - South East Asia

Dear Friends,

I want to take this moment to sincerely thank you all from the bottom of my heart in helping out in anyway you can - advice and words of comfort meant a lot to my efforts to help out my mother.  Unfortunately, she has passed us on on Sunday 2345hrs our time. 

I sincerely believe. apart from the cancer, she has also contracted septisimia and pneumonia which eventually succumbed her.  However, from the report the doctor claimed she passed on due to advance cholangiocarcinoma.  I doubt it very much because I saw my mum suffering in her breathing. 

Throughout this episode, I do agree with Jeff that an early intervention would have somewhat prolonged my mother's life.  Unfortunately it doesn't seemed so.

To those who are still fighting, my prayers goes out to you all and I hope a cure comes soon. 

Once again, Iris, Deb and Jeff thank you very much.

Re: Newly diagnosed from Brunei - South East Asia

Joel ... I'm so sorry to hear of your Mother passing.  My sincere condolences to you and your family.  May your Mum rest in peace.  She no longer has to battle the pain and suffering. May you find the strength during this trying time.
God Bless,
Jeff G.

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

Re: Newly diagnosed from Brunei - South East Asia

Joel,

So sorry you have lost your Mom.  It is always so hard to loose the ones we love.  Prayers coming your way to try to help lighten your load.

Karen

Wishing all God's blessings!

Re: Newly diagnosed from Brunei - South East Asia

Dear Joel,
So sorry about your  mom - you did all you could do in the short time you had.  You were a wonderful son to her and I'm sure she appreciated that until the end. I wish you some peace in the rough times ahead.
-Joyce

Re: Newly diagnosed from Brunei - South East Asia

Joel, extending my sincere condolences on the passing of your Mother.  Mother's are so special.  May you find comfort in the coming months ahead with the memories and love of your dear Mother. 

Carol

Re: Newly diagnosed from Brunei - South East Asia

Joel,  I am so very sorry to hear that about your moms passing.  My heart goes out to you and your family. I wish   there was something I could say to ease the heartache ...just having  a loving son like you to care so deeply and fight so hard for her   is priceless gift ....   You were obviously a blessing to your mom....   Your love for your mum remains alive forever and with that she will always be with you .  Hugs  and my deepest sympathy, Deb