Topic: New member

Hello all.  My sweet father was diagnosed in March with a stage 1 intrahepatic tumor.  Even though he was 87 at the time, he went through y90 treatments and did remarkably well.  He has no pain, but is beginning to decline.  Due to several falls (he doesn't seem to have the strength to keep himself upright) he went to the ER.  His sugar numbers were through the roof, although he was not diabetic until now.  And his kidneys are shutting down.  He is resting comfortably in a nursing home, and we have already begun hospice.  He is very alert most days, which breaks our hearts, but we are trying to make the most of our remaining time.  I've read through some of the posts on this site, and almost all talk about the horrible pain.  Is this something that Dad will eventually have, or since his CC  is primary and the tumor is small could it be that he won't have to face that particular challenge?  My heart goes out to each and every one of you!

Re: New member

Dear Bossydaughter (and I am sure you are not bossy) welcome to our wonderful family but sorry you had to join us. Just as our young people who are getting CC saddens me, It is sad as well for someone to live to such a good age and then to be hit by something like this. Please know that you have done all the right things. Not everyone gets pain as everyone has different effects, no 2 seem to be alike. You can make this a very loving and wonderful time that will always be cherished. I am wishing your Father to continue his journey pain free and please keep us posted, we truly care.

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: New member

Thank you, Lainy.  I guess we are all feeling like we might have started hospice too soon.  But my Mom can't handle him by herself, and I am 10 hours away.  I will treasure the good times we are sure to have and be thankful he isn't in pain.  It isn't too soon, I know, but when he is feeling good he doesn't realize how sick he is.  Thanks for your kind words.  They mean a lot.

4 (edited by PCL1029 Sat, 22 Dec 2012 09:12:29)

Re: New member

Hi,
Pain may not a common occurrence for the end stage of cholangiocarcinoma patient; but I know patients on this board have been complaint about it.
I had a 6x8 cm tumor in my liver before the first resection; and  a couple 2x3cm tumor in the second resection. I feel no pain.and I have ICCA .
My sis-in-law who passed away of the same disease had no pain that I could be aware off during the last 5 days of her life. Most of the time she was just too weak to even saying a word,but she know about what happened around her. she might be in and out of conscious due to  the disease.She had ECCA.

My best guess is that ,patient may experience pain due to the location and size of the tumor; the scar tissues after resection,procedures or the radiation treatment received.
If you father can get the blood sugar under control; he may be as well as a new man, please try to get a GP and/or an endocrinologist to see  your father to get the blood sugar under control. Hopice dose not means it is the end and you can stop or come back to the program if you wish.
If I were you, and since I am a patient of this disease, Stage 1 CCa at this moment may not be the cause of problem unless is related to the Y90 treatment. The blood sugar may be the problem.
BTW, i am not a doctor but just a patient who live with this disease.
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: New member

Yes, PCL, that is what I am beginning to think.  Will be there tomorrow, and will track down a doctor.

Re: New member

Hi Bossydaughter,

Welcome to the site. Sorry that you had to find us all and I'm sorry also to hear about your dad. I am glad though that you have joined us all here as you will get a load of support and help from everyone.

My dad had CC and I was his carer throughout his fight. You ask about pain and both Lainy and Percy have talked some about that. Yes not everyone has pain or severe pain. My dad spent his last few weeks in hospice care. They took him in there to deal with his nausea and my dads pain was not severe. Yes he did have some pain for some time and that was dealt with whilst he was at home successfully with codeine based tablets. And when dad went into hospice and throughout his last few weeks the pain did not get severe either. Yes he did have some bouts of pain, but that was controlled successfully with pain killing injections as and when he needed them. I guess what I am trying to say that if your dad does experience pain at some point then it should be able to be controlled. I was concerned about pain when my dad went into hospice just as you are with your dad, and I was told that they would be able to keep any pain under control. And I have to say that they were indeed able to do that. Just thought I would share that with you as that was my dads experience here.

I read your posts and it takes me back to when I was in your shoes with my dad. Do make the most of this time and treasure each moment. I can still remember here when my dad was sitting up as well and we would talk about stuff from years ago! This is a tough time, but please make the most of it as well. And know as well that we are all here for you and we care, and we know what you are going through too.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member

Thank you so much, Gavin.  I appreciate your kind words.

Re: New member

Update on my Dad.

Thanks again to all who replied to my initial message.  I felt IMMEASURABLY better after hearing from you.  Dad's glucose levels are under control, thanks to about 3 insulin shots a day.  It seems excessive in some ways, but since he was not diabetic before, I suspect that it is due to his pancreas failing more than "regular" diabetes.  His kidneys are compromised, and he is having some bloating.  His latest issue is feeling the urge to urinate but not being able to.  Could this be part of the bloating, which I assume is ascites?  Or is this likely to be something else, such as a urinary tract infection?  The doctor is supposed to see him today, but I wanted to have an idea from y'all so that I can be prepared for what I might hear.

Re: New member

Dear Daughter (I just can't call you bossy) LOL, you have absolutely done the right thing by having Dad in Hospice. I don't know about the Urination problem, best to wait for the Doctor. I can tell you are a very loving family and I just know you are using this time to make some more Happy Memories. I am on insulin 3 X a day and it is usually given before a meal to help with the sugar control. Please let us know what the Doc says and many thanks for the update! Be strong!

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: New member

Thanks, Lainy!