Topic: So new....what next

Good Day
My husband was diagnosed with Intrahepatic Cholangiocarcinoma a month ago.  He has undergone a course radiotherapy (radiation).  He has to wait about 2 months before his next scan.  For pain, he is currently using OxyNorm and OxyContin, which lmake him very sleepy.  He becomes very disorientated and we do not know if this is from the medicine or the disease. As a result he has taken time off work.  This is all very new to us.  Before his diagnosis, we we had never heard of bile duct cancer.  What I would like to know is,  will he improve in health suffinciently to be able to continue working?  Or do we need to start making serious decisions about his employment?  It would be wonderful to hear from people who have been through this experience, and how they have coped.  Thank you.

Re: So new....what next

Oh, Stella, I have responded to you in one of your other postings, but gladly respond here as well.
Do you know the his disease stage?  What type of radiation therapy did he receive?  Was your husband disorientated prior to the diagnoses of this cancer or is this is an ongoing symptom?
As it is night time in the US and many of our members are resting for the night please know that you will receive numerous responses within the next few hours.
Hugs,
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: So new....what next

Hi again Marion.
The radiation program says Rad EPID.  I have no knowledge of radiation so I do not know if that code means anything to you.
Previous to the diagnosis, my husband had many stress related issues, including high blood pressure (medication controlled) and a slightly underactive thyroid.  I cannot say that he was disorientated before because he was still very active mentally as he is general manager of a company and seemed to be coping, besides the stress.  But now, he cannot even read an email without doozing off.  It is sad to see this.
I did ask the main Oncologist about prognosis and staging.  He said we are to wait until after the next scan to see what/if any shrinkage there has been from the radiation.  Also, there are a few spots in the lungs, which they are monitoring.  If they are secondary tumours, the whole picture will change.

Re: So new....what next

Stella I want to welcome you to our extraordinary family but sorry you had to find us. I don't think we have enough information yet to try and answer your questions about CC. I know when my husband had radiation he got real sleepy towards the end of it (25 doses) but that passed about a week later. You might tell the Doctor what is happening and perhaps the pain meds need to be changed. I am not sure how things work where you are but please keep in mind that many times we urge 2nd and 3rd opinions. Hoping for you to get to the bottom of this. You are not alone we are all here for you now!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: So new....what next

Update:  My husband became dehydrated from vomiting, was very disorientated and could not speak properly, and ended up at the ER on Saturday.  He was admited and came home yesterday.  He has completed his 10 sessions of radio-therapy.  The oncologist says that is all he will be getting as his liver cannot tolerate more.  Currently they have him at stage 3 but if the next scan shows that the spots in the lungs are tumours, it will be changed to stage 4  (and he will have chemo).  Basically all they have done is try to shrink the tumour to releave the pain.  He had to face the reality yesterday, that there is nothing more that can be done for him.  This is not a cancer that can be cured.  We need to try to build him up so that he can get back to work.  Can anyone suggest how to increase his appetite?  A few mouthfuls of nutrientional shake and oatmeal are all he can manage.

Re: So new....what next

Hi,

High protein drinks like Carnation Breakfast drink,or Ensure plus or Boost plus[ie: there are 360 Calories in 8oz (237ml)of boost Plus] and add fruits and vegetables.
other people will have their suggestions too.

However the reasonable thing to do now besides the above is to prepare for things after the CT scan next month. If I were you, I will check out whether your Government will provide disability benefits to your husband because of his illness.
In the States, cholangiocarcinoma qualify for such benefits and if so, your husband will not need to go back to work and will have more time for you and the family.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: So new....what next

Stella....MEGESTROL or called Megace a synthetic form of Cannabis (Marijuana) or the real stuff has helped numerous patients increase their  appetite. 
Although few people are cured of this cancer, many others have lived it with for many years.  In fact I am in touch with Barbara, a more than 10 year survivor of this disease.  And, then there always is the hope that the "silver bullet" is heading our way for a cure. 
See if you can get your husband to increase his calorie intake.  You might want him to eat whatever he wants, but keep an eye out for high protein meals.  We prefer "grazing" throughout the day however; that can increase constipation issues.  Moving around right after the intake of a meal helps with the digestion. Opioids used for pain control can really cause havoc with his bowels.  Therefore, you will want to make sure that things keep moving with his digestive tract. 
Hugs,
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: So new....what next

Oh my, there is so much to learn.  Up until November 2013, my husband was leading a normal life, involving traveling for business and managing a very busy company.  Now he is sickly all the time and barely manages 1/2 hour at the office once a week.  He is complaining about severe lower back pain which shots down his right leg.  Sounds similar to the diabetic neuropathy that I suffer from  (I am Type 2 diabetic).  One would think that the slow-release and fast acting Oxy meds would ease this but no... now he is taking general pain meds as well. He seems to been taking an awful amount of meds throughout the day - pain and other - how much can his damaged liver cope with? 
He will not put the lights off at night, so I am having to learn to rest with the bedside lap on.  But I dont mind, as long as he is comfortable. 
I dont know if my husband will ever work again. 
I was expecting improvement after the radiation which finished on Tuesday last week - am I expecting too much too soon?

Re: So new....what next

Stella...In regards to your last question, I would ask the opinion from the physician.  I don't know how much pain your husband had prior to the radiation, but it appears to be still very bothersome to him.  Make sure that he consumes plenty of fluids so that another ER visit can be avoided due to hydration. Please keep us posted.
Hugs,
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: So new....what next

Hi Stella,

Just read through your posts and want to welcome you.  Sorry you have to be here, but you are in the best place to be for support and answers.  From what I have read, I agree that you need to ask the doctor about some of these things.  Also a second or even third opinion would be helpful.  Along with getting some answers I think hydration and pain control are most important at this point. 

Let us know how your husband is doing and try to take care of yourself, too.

Love & Hugs,
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.

Re: So new....what next

I've been told it may take me several weeks to get past the exhaustion that comes with radiation. He's still pretty early post-radiation, but I'd still talk to his doctors about what you are observing.

Impatient patient.