1 (edited by Mark S Mon, 01 Mar 2010 15:19:38)

Topic: New Cholangiocarcinoma Patient Blog

Hello - My name is Mark and I am 48 y/o and was diagnosed with a peripheral intrahepatic CCA in July of last year.  I have been undergoing chemo for last 7 months (GEMOX, Tarceva) and recently started a blog to discuss issues surrounding the diagnosis, treatment and recovery from CCA.  I also want to provide some resources to CCA patients and their caregivers.  I want to thank Marion S. for inviting me to join the discussion here at cholangiocarcinoma.org and post a link to my blog.  Marion and I share the same passion for the need for advocacy on behalf of CCA patients!  My blog is not intended to compete in any way with the wonderful work of the Cholangiocarcinoma Foundation;  My hope is that we will augment each other's efforts in generating more awareness and focus on this disease which will result in more research and management, and eventually a cure!!!  My blog site is:

http://cholangiocarcinoma.wordpress.com

Re: New Cholangiocarcinoma Patient Blog

Hi Mark,

Welcome! And thank you so much for all the hard work you're putting into your blog. It's got so much great information, and lots of useful links. I think it's wonderful that you're putting a personal perspective on it. I think it will be really interesting for both patients and caregivers.

Can I make a request? You might want to copy your post up in the section for Introductions, because I think a lot more people will see it there.

But for now-- I'm happy to be the first to welcome you here. We hope to hear a lot more from you. Your energy and dedication are so inspiring!

All the best,

Kristin

Peace, hope, and healing to all!

Re: New Cholangiocarcinoma Patient Blog

Kristin -

Thanks so much for the feedback, I truly appreciate it.  I will copy my post -Marion suggested I do this too.  I will ad some more bio information and get it on the Introductions board soon. 

I see you're in Berea, KY...I have kin in Ashland where my father is from! Small world.

Thanks again and all the best to you!

Mark

Re: New Cholangiocarcinoma Patient Blog

Mark
Thanks for sharing your blog - its a great resource, written in a "straight-forward" style and will benefit members/visitors here.  With your medical background and specific knowledge (as a patient) of CC, I'd encourage you to visit/contribute to this site as often as you can.

I'm on the same chemo treatment as yourself (GEMOX) - the treatment is going well with a minimum of side-effects. 

Keep well...........Gerry

Re: New Cholangiocarcinoma Patient Blog

Hello, Mark, and welcome to our wonderful Family. I just read your Blog and I like the way you spell everything out. No gibberish, just the real thing. I read where you had been in Arizona and we live in Phoenix. My husband is a 4 1/2 year survivor of a Whipple and we have been very fortunate to have top doctors here. Wishing you the best and of course sorry you had to join our community. But we have the most courageous, loving people from all over the World. And now we have added you another hero.

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 Cholangiocarcinoma Patient Blog

Hello Mark - I've just noticed your blog link - thanks for this; it's really helpful.  I see you've got a Facebook page, too.  You've just got an extra fan ;o)

"Time may be a great healer, but it's a lousy beautician."

Re: New Cholangiocarcinoma Patient Blog

And another Mark!!

Best Wishes with your treatment,

Katie

Re: New Cholangiocarcinoma Patient Blog

Hi Mark,

Just checked out the blog.  Good job!  Very informative,  interesting and educational.  Thanks for all your effort. 

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 Cholangiocarcinoma Patient Blog

Hey all -

Many thanks to you for your support and comments, esp Lalupes, Katieloumatt & Darla for their recent comments.  I confess I am a bit behind in posting  to my blog and have committed to do so this weekend...have been busy with work and participating in some advocacy days at our state capitol. 

I really appreciate the support though and am happy to see so many new followers on my FB page.  Hope everyone has a great Holiday Weekend!

- Mark

Re: New Cholangiocarcinoma Patient Blog

I hope the same for you, too, Mark.  I look forward to reading more.

I've saved your "histology" profile pic to my phone.  I found it oddly soothing to realise how something so tough to live with can be so incredibly beautiful, depending on how you look at it.  My sister was browsing my photos & came across the pic - I was concerned at first as to whether to tell her what it was, but I did ... & she said exactly the same!!  Your pic has soothed us both - thank you.

Julia :-D

"Time may be a great healer, but it's a lousy beautician."

Re: New Cholangiocarcinoma Patient Blog

Julia -

It is odd that at a microscopic level it is very pretty.  I am so glad it has brought you some tiny bit of comfort and joy.  You too are truly a "glass half full" type of person! Thanks for responding!
Mark

Lalupes wrote:

I hope the same for you, too, Mark.  I look forward to reading more.

I've saved your "histology" profile pic to my phone.  I found it oddly soothing to realise how something so tough to live with can be so incredibly beautiful, depending on how you look at it.  My sister was browsing my photos & came across the pic - I was concerned at first as to whether to tell her what it was, but I did ... & she said exactly the same!!  Your pic has soothed us both - thank you.

Julia :-D

Re: New Cholangiocarcinoma Patient Blog

Hi MarkS.  Greetings from a fellow KYian!  My Mom just got recently diagnosed.  Where have you been treated?  We live in Nicholasville, just outside of Lexington.
My Mom is currently being treated at Central Baptist, just because it is all new to us.  We are thinking of going to UK Markey Cancer Center & then off to maybe someone more "advanced" in this terrible cancer.  Any info. you could share on your treatments/where they were done would be helpful.  Loook'n for any info.  Going to research til I'm physically incapable!!!    May God bless you Nd your family!!

Re: New Cholangiocarcinoma Patient Blog

pgaska....I am saying this with a heavy heart.  Our Mark has experienced some difficulties and the likelyhood of him answering your posting is very slim at this time.  As soon as I have any news regarding this wonderful person I will make sure to pass it on.
All my best wishes,
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 Cholangiocarcinoma Patient Blog

Thanks Marions for the info!
Pam