Topic: new to board

Hello I was recently diagnosed with bile duct cancer and have been through many tests and proceedures already,they put 2 stints in my liver,the first seamed to be fine,the second was a inner outer stint with billy bag,which didnt work and I blew out all over my couch out thehole around the line,they tried 3 more times and I think they finally got it right.I am in the process of getting stronger for upcoming surgery of removal of the gull bladder,bile ducts and right side of liver.wish me luck and say a prayer that this will work,as I have 2 kids 19 and 14 and I have to fight this darn thing. love all the posts I will be reading alot here.Thanks Candy z brother mr J

2 (edited by marions Fri, 01 Feb 2008 15:49:53)

Re: new to board

Mr. J.,
Your sister has been wonderful in introducing you to this board and it is nice to be hearing from you personally especially, since you have encountered a few obstacles along the way, already.
There is a posting of someone who

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: new to board

Mr J,
Marions is right, Candyz has been wonderful about introducing you. I have had my share of drain problems as well so I feel your pain (actually I feel my own pain but it must similar to yours smile )  You will see that once the drain is in the correct place, everything just falls into place.

I wont tell you what leaked out of my on my friends sofa! Good luck gaining strength so your surgery can procede. I wont lie, it will be difficult after surgery but so worth it! I will keep you in my prayers.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: new to board

Hi,
anyone else experience bad night sweats?  is this normal?
candy

5 (edited by JeffG Mon, 04 Feb 2008 15:43:00)

Re: new to board

CandyZ.... Bad night sweats ... Have had many.  Three primary reasons for me was side effect of Chemo, infection or fever breaking, or immune system fighting off bacteria which tends to happen more at night or when laying down for nap.  Main thing is to take your tempature; Anything above normal take non-aspirin fever reducer.  If that don't help and/or your temp spikes above 100 I went to ER for evaluation. Turned out one time to be a sinus infection.  Another time was pnuemonia.  Unfortunately we can't blame the everyday viral or bacterial stuff on CC.  Well, You can if you want.  When my immune system is down then I do.  Also, shock from from your body fighing the changes of the CC would fit in my opinion.
God Bless,
Jeff G.

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

Re: new to board

for me:  night sweats = menopause

smile

Re: new to board

Hello Mr J checking in  I have been doing really good at stint recovery,now all of a sudend I feel the bloating and pressure I felt when I had my my blow out around the tube and they put a biloma apcess bag in now there is no bag and the billy bag was capped off. I put the billy bag back on and it is filling fast still no relieve. I have changed hospitals and have not had any proceders yet and hate to go back to the surgeon that already tried 4 times. I will check in with blog in the morning before I go to church hopefully not emergency room.  Thanks Mr J Candyz brother

Re: new to board

How are you doing now, Mr J?

Re: new to board

Hi Lisa,
Mr J is doing ok thanks for asking...he had to attach bag to the PCT (or is PTC) tube so the external drain is working, he thinks the internal is blocked.  If he can hold out (no fever) he goes to University hospital on Thursday and they will check it out, so he won't have to go back to old doctor.  Got a much better feeling from this hospital.  They followed up right away and started organizing things for him.  I think he's down a little at thought of going back in  (was doing so great for almost 2 weeks!) and hasn't been online.
Rick if you read this-hang in there!
Candy Z

Re: new to board

Hi,  I stumbled on this site by accident as someone had left it up on a computer at work. We lost my mom 12years ago at age 55 to CC, but didn't know it until the autopsy. She suffered for many years with lupus and severe emphysema yet never smoked. Her Lfts were always elevated but explained away by the fact that the drugs she took for her lupus- imuran, methotrexate etc. elevated Lfts. In the end she was hospitalized with extreme shortness of breath and shortly there after was in multi system organ failure and decided to withdraw treatment.  Her doctors requested the autopsy as she was such an autoimmune puzzle, they believed at the time it was all related to the lupus. The autopsy results were that her liver was full and she was throwing tumor emboli to her lungs. A shocker!  So here we are now her 3 children still wondering about the hereditary component and the possibility of an autoimmune relationship. This site will be a resource for us for new research information & personal experiences.  How great that I found you all.  To all you fighting stay strong & fight hard!

11 (edited by marions Tue, 26 Feb 2008 21:52:21)

Re: new to board

Hello and welcome, Kimp
So sorry for you having lost your Mom 12 years ago and so grateful for you sharing your experience with us.
This is what I have learned so far.  There are still many unanswered questions in re: to CC. Heredity, predisposition, and a autoimmune disorder have been addressed in the past although, as far I know, none of it has conclusively been linked linked to the occurrence of CC.  Some associated risks seem to include primary sclerosing cholangitis (an inflammatory disease of the bile ducts), congenital liver malformations, infections with the parasitic liver flukes and exposure to Thorotrast (thorium dioxide), a chemical which had previously been used in medical imaging.  Also, I have been reading about a possible connection with chronic interductal gall stones and CC. 
Hopefully, the research for this cancer will increase thus bringing us closer to a conclusive risk factor in re: to this cancer. 
Experiences such as yours are so very valuable to all of us.  Thank you for joining.  Most likely, many others will have comments coming your way.
Marions

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: new to board

This is all so interesting as my mother has an autoimmune disorder and she also suffered from gallstones till they removed her gallbladder.

Michelle

Re: new to board

Just wanted to chime in that my mother had autoimmune problems that turned into autoimmune hepatitis, and what precipitated all her problems was the removal of her spleen 15 years before her death. I believe I asked elsewhere if anyone had a splenectomy prior to diagnosis - I also have a close friend who had her spleen removed and subsequently developed lupus, and has been on kidney dialysis for years.
-Joyce