• From: Cedar City,Utah
  • Registered: Wed, 28 Dec 2011
  • Posts: 5

Topic: Introduction

Hello, My name is Dave.  I live in Cedar City, Utah. I turned 40 yesterday, I am married and the father of 4 and 6 year old boys.  The week before Halloween of this year, I had some abdominal pain.  I tolerated it for about 5 days and scheduled and appointment with my primary doctor.  When he came in the room he noticed I was jaundice and after explaining my symptoms he informed me that I should prepare for removal of my gall bladder.  After and ultrasound they confirmed my gall bladder was full of sludge and needed to be removed.  About 4 days after the surgery I wasn't feeling any better, my wife noticed my jaundice was getting worse, and I developed the dreaded itch.  My doctor then scheduled an ERCP to see if the upper dile duct was ok.  I had my ERCP on November 8th.  They discovered a Klatskin tumor on my bile duct and it had swollen shut the duct.  They doctor then inserted a stint in order for the bile to start to flow.  After my awakening from the procedure the doctor told my wife and I what he thought I had and that if it was this my life expectancy was between 6-9 months.  They scheduled and MRI and a appointment at the liver transplant center at Intermountain Medcial in Murray Utah.  We went up within few days of the MRI and met with them.  Fortunetly, that center is doing a medical study on this particular CC through the Mayo Clinic protocols.   I met all the criteria and was asked if I would participate in this study.  The protocol is 30 radiations treatments( 2 a day) and 3300 miligrams of Xeloda a day.  This has to happen 15 times within a 21 day period.  Then I do Brackeytrerapy with a radioactive stint followed by Gemcitabine chemo, followed by a liver transplant.  I have just compelted the first round about 10 days ago and do the Brackeytherapy on the 9th of January.  I have been listed on the liver transplant list and if it doesn't spread I will be on the Gemcitabine until the liver comes.  My attitude has been great and easy to maintain. I  have been battling the fatigue and a little nausea but other than that I have been ok.  I am nervous about the Gemcitabine.  Thanks for letting me post this and I hope it is not too long winded for my first post.  I would love any comments about Gemcitabine and how others have handled itl  Also, if anyone else is apart of this study.  Thanks again. Dave

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,733

Re: Introduction

Hi,
Gemzae is easy to take, you may not have any side effects,a bit nausea at the most.you are in good hands good luck.
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.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,825

Re: Introduction

Hi Dave,

Welcome to the site. Sorry that you had to find us all here but I'm glad that you've joined in with us all, as you have come to the best place out there for support and help. Thanks for sharing your story with us all and no, your post is not long winded at all so please do not worry about that. You go ahead and post as much as you want, and if it helps as well, please feel free to shout, scream or vent if you want too!

How is the stent working out for you and has it cleared up the jaundice yet? My dad also had a stent, a metal one for his jaundice and it got the bile flowing again and got rid of that itching! And thanks also for explaining the treatment plan that you are on. I will keep my fingers crossed and hope for the best possible results with it. Also, please keep us updated if you could on how you are doiing and how the trial is going for you as well. We are all here for you.

Many of our members have been or are on Gemcitibine and there are a ton of posts on Gemcitibine. Using the serach forum function here will throw up these posts, and we also have a great chemo board here that I am sure will be of great use to you as well.

http://www.cholangiocarcinoma.org/punbb … .php?id=16

Looking forward to hearing more from you, and please know that we are all here for you.

Best wishes,

Gavin

  • From: Cedar City,Utah
  • Registered: Wed, 28 Dec 2011
  • Posts: 5

Re: Introduction

Thanks Gavin,  the stint worked immediatley.  The jaundice left failrly quick but the itch stuck around for a while.  It's gone now.  Thanks for the advice on the search.


Thank you

Dave

  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,825

Re: Introduction

Hi Dave,

Glad to hear that the stent is working and that the jaundice and the itching is gone now. I know that my dad felt so much better once his stent started working and his itching stopped. The itching drove him mad and I'm sure you can relate to that. Are you taking anything for the nausea? If you need them, there are a load of meds out there that can help with nausea.

Best wishes,

Gavin

  • From: Cedar City,Utah
  • Registered: Wed, 28 Dec 2011
  • Posts: 5

Re: Introduction

Gavin, I have been taking Ativan and Zofran.  They have been working fairly good.  I think the aggressive double treatment of the radiation and the chemo has  made it a little more uncomfortable than just one or the other.  Yeah the itch was maddening, and so far probaly the most worst side effect of anything to date.

Thanks

Dave

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: Introduction

Hello Dave and welcome to our awesome family! How exciting that you are on the transplant list! My goodness that is the best news ever! We get very excited around here when we hear surgery or transplant! You have a wonderful attitude and that is better than any RX. In case you get any itching of any kind again, we used a cream called Sarna and you can get it at Walgreen's or CVS. Worked great for Teddy's itching. Please keep us posted and I am wishing for the transplant and a healthier year for you in 2012!

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.
  • From: Cedar City,Utah
  • Registered: Wed, 28 Dec 2011
  • Posts: 5

Re: Introduction

Thank you Lainy.  Support is a great RX as well.  Thanks again.  Do I keep posting to this post with updates or do I start other posts?

Thanks
Dave

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: Introduction

What ever you like to do. We have a 'Good News Section' and a 'Members Cafe' (I use that one mostly) just look at the choices on the home page and what ever fits works. Oh and 'General Discussion'. We are glad to hear from you any way you choose. My concern is that the posts don't get lost in a thread they may not be seen in. You have found the place with us as we really care and you are not alone here.

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.
  • Registered: Fri, 12 May 2006
  • Posts: 8,157

Re: Introduction

Hi Dave....a warm welcome and a Happy New Year to you.
Our jathy will be around real soon as she has lot's to tell about her liver transplantation, but I also wanted to point out a few others who have blogged about it on our site.  In fact, another Dave has received his transplant at the very same institution you are being treated at.  I am glad that you have found us – no one should have to be touched by this disease without the support system on hand….our site.
Good luck and all my best wishes,
Marion

http://www.cholangiocarcinoma.org/punbb … hp?id=3729

http://www.cholangiocarcinoma.org/punbb … hp?id=4886

http://www.cholangiocarcinoma.org/punbb … hp?id=4993

http://www.cholangiocarcinoma.org/punbb … hp?id=5631

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
  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 674

Re: Introduction

Hi Dave,
I had 6 months of Gemzar chemo (1x a week for 3 weeks and then 1 week off).  I did get tired and we had to switch up my nausea meds, but finally settled on Ativan, which works for nausea and also for anxiety..double goodness!  Try and stay hydrated and if you need to, baby yourself.  I worked through all but the last round and a half of chemo at my sedentary desk job (no hard labor for me!) and went on a cruise 2 weeks after my last chemo.

It's not a picnic, but I found that the side effects were manageable.

Hang in there!! May 2012 bring everything you need for good health!!

Happy new year.
-Randi-

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • Registered: Thu, 09 Sep 2010
  • Posts: 533

Re: Introduction

Dave-Welcome and sorry you had to find us. I am a CC survivor, I am cancer free 2 years thanks to 2 liver transplants!! I have a remarkable story to share with you. I am alive because of God, 2 strangers and Dr. William Chapman st Barnes-Jewish Hospital in St. Louis MO.
Dave, like you I was basically healthy, just itchy. I was diagnosed by an ERCP (I ended up having 9 total while waiting.) My trial was intravaneous gemcidabene for 8 weeks and then 6weeks of 5 days a week radiation, while wearing a chemo pump with 24 hour a day 5FU chemo for the same 6 weeks of radiation. I then has surgery to make sure it hadn't spread and was placed on transplant list Jan29,2009 I took mega doses of XELODA (24 pills a day) while waiting.I received my first liver May 24, 2009. I had two "fake liver" calls during that time, one time I was actually being wheeled into the operating room. My MELD score kept increasing because the longer we wait the sicker we are supposingly. I never had the "lifetime movie" expierence, I managed all my naseau with 3 types of meds (Adavan, Compazine and Zofran). I also "crawled into my recliner" at the end of radiation and that was pretty much where I stayed. I was hospitalized several times  because of the stents. Fatigue was the main sympton amd the longer I waited the more tired, but I was never bed ridden.
I would love to talk to you and help answer any questions. Please feel free to email me or call 618-567-3247. You can also read my story at thetelegraph.com under christmas miracle. (I also keep it posted on my FB page Catherine Sims Dunnagan, I also have another CC transplant story posted). I have so much to share with you about being a transplant patient I look forward to hearing from you.
Dave there is HOPE, and you are truly lucky to be able to qualify for this trial.
Lots of prayers-Cathy

  • From: Cedar City,Utah
  • Registered: Wed, 28 Dec 2011
  • Posts: 5

Re: Introduction

Cathy, thank you for your post.  I have read your story at The Telegraph and have  the butterflies in my stomach.   Since my post yesterday I have had a huge feeling of support.  Eventhough I have a wonderful support group of friends and family, I have at times felt a little alone since my diagnosis.  I am a little lost for words right now but I so look forward to emailing and talking to you soon.  How do I get your email address?

Thank you so much.

Dave

  • Registered: Fri, 12 May 2006
  • Posts: 8,157

Re: Introduction

Dave....for e-mail please scroll to bottom of box, left side, under name of person you would like to reach.

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
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,487

Re: Introduction

Dear David,

I would like to welcome you to this site. I am sorry you had to come here but I am very happy to hear you are on the transplant list. That is so great. My daughter Lauren who is 25 has CC. She is on Gemcitabine, Cisplatin and 5-Fu. Quite a bit of chemo, right. Anyway, she handles it all very well. She gets anti nausea meds in her IV before chemo. She also takes compazine and ativan. She keeps up on the compazine for a few days after chemo and then doesn't really need it unless she eats something that doesn't agree with her. She only takes the ativan before bed. She mostly takes it to calm her down and help her sleep. She also has Zofran, but we discovered it caused her really bad headaches. So she doesn't take it anymore. I think it depends on the person as how you will be able to handle it. Lauren is lucky that she does well. I hope everything goes well for you. Take care.

-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • From: Chicago, IL
  • Registered: Sun, 15 Jun 2008
  • Posts: 710

Re: Introduction

Dave,

First, welcome to the best little discussion board. Second, I think it was pretty cruddy of the doctor to give you 6-9 months, I think you should ask him if he can see the winning lotto numbers in his crystal ball. We have many people on this board who were told the same and they are still here and kicking so take what he said with a grain of salt.

It's great you are on the trial, we will all be hoping and praying for you on your path to a brand new (well, actually, I guess a used model) liver!

Patty

tiapatty's Website

  • From: Hooper, Utah
  • Registered: Mon, 12 Sep 2011
  • Posts: 199

Re: Introduction

Dave,

Glad you found this board. It's alway good to hear from fellow Utah folks. I'm actually kind of jealous in a way........in that you are operable and are on the transplant list.  My CC in inoperable.

Just want you to know that my thoughts and prayers are with you.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."
  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: Introduction

Hey, Byron, are you and Dave anywhere near each other?

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.
  • From: Hooper, Utah
  • Registered: Mon, 12 Sep 2011
  • Posts: 199

Re: Introduction

Cedar City is a few hours south but he is being treated here in the Salt Lake area.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."