Topic: What can I do?

My 71 year old dad has CC - diagnosed 2 weeks ago.  We are waiting for an appt with a hepato-billiary surgeon.  However, my dad just seems to be getting weaker and weaker from the jaundice?  He has no pain but is extremely fatigued, he has also lost his appetite.  They have done ultrasounds and blood tests and assure us that there is no other cancer and the CC is localised.  He is looking gaunt and so frail.  Is this the way the disease runs its course?  Is it winning?  What can I do?  I keep waiting for the phone call from my mom telling me the worst.  Please tell me, is the end near based on all this?
What can I do?

Michelle

"My dad, Tony, passed away on 4 October 2010, after a 19 month battle with CC"   - I carry you in my heart, Dad, forever.

Re: What can I do?

When is the appointment? You may try calling the surgeon to see if he can see him sooner.

3 (edited by duke0929 Mon, 16 Mar 2009 07:23:00)

Re: What can I do?

hang in there, i know its hard ...call the doctor and explain the situation to him and tell him you need a sooner appointment...BE INSISTENT...also try and give him a health drink like ENSURE..and im a believer in vitamin d a 1000 units aday..vitamin d helps activate the bodies natural defenses that fight infections...good luck and prays .....never give up and never take no for an answer......ron

Re: What can I do?

There were a couple times with my wife where we had to have her admitted to the hospital for a couple days just to have her evaluated, get her some nutrition via IV and make sure nothing was amiss.  No one wants to go the hospital but we never regretted our decision.

Good luck.

Re: What can I do?

I was the same way. The doctors put stents in my liver and that helped the jaundice. I even got back some of my appetite. Talk to your doctors right away about options. Do not wait! Make a list of all your questions and bring it with you. For me surgery was the first step, followed by chemo. Good Luck

Re: What can I do?

I lost my appetite too and also became weak before my surgery. The tiredness can be from lack of sleep as well as the cancer. For me, being jaundiced was HIGHLY uncomfortable and I itched so much and was so burning hot that I could not sleep for weeks before the surgery.

Press the doctors to see if they can put in a stent to help relieve some of the symptoms and push for a quicker date.

Best of luck.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: What can I do?

Appt on 24th of March at 10.00.  So, 1 week away....Have spoken to Doctor, given him a whole list of questions, he is non-committal.  The prof we are due to see is supposed to be the very best in Cape Town, we are just so limited in South Africa when it comes to expertise as well as different treatment options.  Will go and see if i can get some vitamin d and some ensure.

Many thanks

Michelle

"My dad, Tony, passed away on 4 October 2010, after a 19 month battle with CC"   - I carry you in my heart, Dad, forever.

Re: What can I do?

As well as writing down questions it is helpful to keep a diary of the people that see your dad and what they say and the treatments/diagnosis they offer. It is very easy to lose track of things. It is harder for them to fob you off if you can repeat what they say back to them and ask for an explanation. If you are seeing different teams (hepatic/surgical/gastro...) for different reasons you can get pushed from pillar to post with no clear overall picture of what is going on.

So write it all down.

Re: What can I do?

Dear Michelle,
My husband's symptoms were identical to your Dad's. I am not an expert but it could be a blockage in the bile duct that is causing the jaundice and other symptoms. As soon as a stent was put in the bile duct, the jaundice disappeared and he returned to normal (aside from CC). I agree with all the other posts above - especially the post regarding admision to the hospital at the earliest opportunity. Be pushy/polite.
Good luck and my thoughts are with you.

Re: What can I do?

Hi Everyone

A stent was put in about two weeks at the time of diagnosis via ERCP.  Stent put into Bile Duct.  Perhaps, it is not working properly?

Michelle

"My dad, Tony, passed away on 4 October 2010, after a 19 month battle with CC"   - I carry you in my heart, Dad, forever.

Re: What can I do?

I think you need to wait for the review with the specialist.Your dad is not well and I think you will face some difficult times.It sounds as if the right treatment has been started           kind regards    Janet

Re: What can I do?

Michelle,

Your initial post is from about a week ago, so perhaps the condition is already better, however, when my dad was jaundiced, he too was extremely fatigued and therefore didn't eat much.  Once his stent was placed, it took maybe three or four weeks for the jaundice to improve and the bilirubin counts to get back to "near normal".  Was his bilirubin count terribly high?  My dad's was 16 at it's height, although his surgeon told him of another patient who came into the hospital at over 40.  I can only assume that the higher the bilirubin, the worse the jaundice and the longer it takes for the body to correct the situation once the stent is placed.  However, be persistent and have his levels checked often to make sure they are going down.  You seem to be doing all the right things. 

Exposure to sunlight helps jaundiced babies (because of the vitamin D). Maybe get him to sit in the sun also. 

Hope  you are taking care of yourself as well...

Kirsten

Re: What can I do?

Michelle,
I agree with Kirsten's comments. May I also add that the stent may need to be changed - this is totally normal, they usually don't last for more than 5 weeks (unless they're permanent). For example, my husband's first stent lasted 4 weeks, the second stent 3 days and now is on the 3rd (well, actually, he has 4 - 3 internal and 1 external).

If the stent is blocked/not working (which is normal) it can lead to infection. This happened to my husband (enterobactor cloacae) - he's back in hospital as a result .

Keep pushing the doctors, i.e. express concern that if the stent is blocked that it may lead to infection.

Re: What can I do?

I think we already there in terms of infection.  My dad was admitted this pm.  He has an infection, and is also going into renal failure.  I write this from the hospital, it is 1.20 am in the morning.  We have been advised to wait at the hospital and not go home as the next 24 hours are crucial.  My dad is being pumped full of antibiotics as well as pain killers.  He is dehydrated and really weak.  We wait and pray.....thank you for your thoughts and prayers.

Michelle

"My dad, Tony, passed away on 4 October 2010, after a 19 month battle with CC"   - I carry you in my heart, Dad, forever.

Re: What can I do?

Michelle....My thoughts and good wishes are with you.  We have seen this on the board before and I am hoping that your Dad will fight off the infection as others have also.  Thinking of you and sending tons of hugs your way.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: What can I do?

Prayers going up for you and your Dad.

Re: What can I do?

Michelle,

My thoughts & prayers are with you & your family.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.