Topic: New to site

I have looked at this site a couple of times since my dad had been diagnosed with CC in Feb. 08.  He passed away that April.  I have been reading quite a few of your experiences with this and I just wanted to tell you all thank you.  It was difficult watching my dad and the rest of family go through everything and I know that we all felt lost and confused.  We had never even heard of this type of cancer before.  It is unfortunate that other people should ever have to go through something like this but comforting to know that we aren't alone and there are people out there trying to do something to ease that suffering and hopeful prevention for those in the future. 

My dad was only 57.  I know I will never be able to understand why this had to happen to him.  I just hope that one day someone will be able to figure out a way to keep it from happening to another family.  I still miss him severely but I am thankful for the years we did have together.  I read a post from someone about a possible connection with colon cancer.  That was interesting because my dad had colon cancer 17 years prior to him being diagnosed with cholangiocarcinoma.  Should anyone have more information about that I would love to hear from you.  I know it can't help my dad now but I would still be interested to hear about that. 

Kelly

Life is a work of art and each day a potential masterpiece.

Re: New to site

Hello Kelly and welcome to our site.  My hope is for one day the key to this cancer will be found as way too many people have to experience what you are describing.  I wonder also whether there is a connection with Colon Cancer and then Cholangiocarcinoma/bile duct cancer.  We have seen it on this site several times now. 
I am glad that you have found us and am hoping for you to continue to be part of this unique family of cholangiocarcinoma.org.
Hugs to you,
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: New to site

Hi Kelly How devastating to lose your father so quickly like that.You must have been in shock.Wi th such a rare cancer its harder to understand and identify with others-they dont seem to get it-the speed of it etc

       good luck

Re: New to site

Kelly,

Welcome. I am glad you have joined us. I am not sure about the colon cancer connection, but as Marion said, it has been brought up several times on the site.

Many of us on here have experienced the fast & devastating results of this horrific disease as you have and truely understand how you feel. This site has been so helpful & comforting to me. I too am hoping you will continue to be a part of our "family".  Everyone here is so kind & compassionate. Only those of us who have experienced the pain & suffering of this awful cancer can truely understand what it feels like.   

Take Care,
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: New to site

Welcome Kelly. I am sorry that you've had to go down the terrible cc road- you're in our thoughts.  My Dad was just celebrating a 5 yr. anniversary of being colon cancer free when he received his cc diagnosis in Nov. 08. I don't know of any research to support the connection, but I can tell you it's been Dad's experience.  My Dad is 64.  Please keep us posted on your findings... as there's much more research to be conducted in this field!

Hugs to you,
Tess

Re: New to site

Hi Kelly,

I am sorry for your loss. My father had colon cancer in 1995 and was diagnosed this past October with CC.

My father is also on simvastatin. This could also be a culprit in this disease.

Jan

Re: New to site

Jan,

That is interesting as my husband had also been on simvastatin. I think I have heard mention of a possible connection to this before. I also hope that in the near future there will be some answers that will help towards preventing & curing this horrible cancer or at least finding more effective treatments. Right now it seems like the answer is there are no answers!

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: New to site

Unfortunately, as simvastatin becomes more prevalent (and everyone who can tolerate it is on it already), I expect CC to gain more attention because it won't be so rare. It's a real shame.

Re: New to site

Dear Kelly,
So sorry to hear about the loss of your dad. My heart goes out to you. We're all hoping for more research and understanding of this disease, so you've brought up a good topic about the colon connection. I hope there is some research into that going on.

Walk:
Can you tell me what simvastatin is? Is it a cholesterol drug? Why is it widely used? Just wondering - my mother was on cortisone at various times, and I think that was a factor in her decreased immunity.

Re: New to site

My best to you Kelly. 

Unfortunately I share your experience and I find it helps to reach out and try to put into perspective and help others smack in the middle of an unforeseen hell that we have experienced.  I have not specifics to offer, just know that you are not alone. 

Researching the materials somehow settles more things in my restless mind, so that I can make informed changes and live longer.

I am sorry for your loss.  -ljg

Re: New to site

Thank you so much for all your support and warm thoughts.  It has definately helped to ease my mind a little knowing that my family and I are not alone on this.

Wanting a cure,
               Kelly

Life is a work of art and each day a potential masterpiece.

Re: New to site

Looked this drug up and here is a piece from a  website:

Simvastatin (INN) (pronounced /ˈsɪmvəst

Life is a work of art and each day a potential masterpiece.

Re: New to site

Because cc is a relatively rare disease, I think there is a great danger in associating all sorts of fairly common diseases and medications with it.  Simvastatin, along with various other statins, is widely used throughout the world in the control of cholesterol levels.  Since potential heart disease is often treated using preventative methods it is likely that a fairly high percentage of cc sufferers will have been prescribed simvastatin at some time.  It does not follow that simvastatin is a cause of cc.

My own experience is that I was diagnosed with angina, which was exacerbated by taking Xeloda.  After having angioplasty and stents inserted to correct the problem I was prescribed simvastatin along with asprin and other common heart medications.  This was done to reduce the chance of a recurrence of the angina.  So, here, I was prescribed cc after being diagnosed with cc.  It could just as easily happened the opther way round.

Re: New to site

Thank you Ron.  I understand what you are saying.  I think I have been searching for some sort of explanation as to why this ever happened.  I know I will never get one and I am still battling accepting that this happened to my dear dad.   

I am glad you wrote and put me back into reality a little.   I hope things are going well for you with your battle.  My sincere best wishes to you.

Life is a work of art and each day a potential masterpiece.