1 (edited by tmrogals Wed, 03 Oct 2012 17:58:37)

Topic: Introduction - Tina R.

Hi, my name is Tina.  I was diagnosed on September 7th.  I work at Johns Hopkins and left work early on September 5th to see my PCP due to increasingly darker urine over 5 days and pale/white stools for two days.

Intermittently over the last several months, I had pain in the upper right abdomen just under my rib cage.  I had an ultrasound in January, a colonoscopy and endoscopy to followup on colon polyps in February, but no sign of this terrible disease.  I kept thinking it was my gall bladder.   I was diagnosed with Chron's Disease as a teenager which I have been told is one of only four potential precursors for this disease.

Late in the afternoon on September 5th, the PCP did a urine stick test and said I was mostly likely having some kind of liver problem and I should go to the ER.  I returned Hopkins to the ER and after a 16 hour experience which included ultrasound and CT with contrast, I was admitted.   I had an ERCP on the 7th, but the internal medicine team at Hopkins told me the news just before going down for the ERCP.  The doc said it's one of two kinds of cancer and neither are good.   CC was the eventual diagnosis confirmed by cytology brushings and FNA of regional lymph nodes.  I believe I am staged at 3C as I have regional lymph node involvement as well as the tumor is encasing a vein. I also have a portal vein thrombosis.  PET found no other obvious tumor sites. 

I start chemo tomorrow at Johns Hopkins using the usual Gemcitabine and Cisplatin.  The plan is to do three rounds and then rescan to see if there has been an effect on the tumor.  I'm considered inoperable due to the location of the tumor ("very far down the tract") and the vein/artery involvement.

I have a very loving and supportive husband and family who are currently holding me together.  My husband and I have three children ages 18, 12 and 10.  I am 46 years old.   I have spent the last three and half weeks being completely overwhelmed by the news.  It's been hard to be positive.

Thanks for listening,

Tina

Re: Introduction - Tina R.

Tina-Welcome and sorry you had to find us. I am a CC survivor, I am 3 years cancer free. I was diagnosed Stage 4 and in operable, my only HOPE was a liver transplant. I am alive because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Please read my story at www.catherinedunnagan.com under the telegraph link.
I was 52 when I was diagnosed and thanks to my great family , I will celebrate my 58th birthday in a month, pretty good considering I was told 6-8 months on July 31, 2008!!! There is HOPE!!
Lots of prayers-Cathy

Re: Introduction - Tina R.

Dear Tina, welcome to our extraordinary family but sorry you had to find us. Your feelings are sadly normal for what you have learned. Kind of like getting hit in the stomach by a baseball bat, but I promise you that once you start the chemo (and good luck tomorrow) the fright turns to fight. I get so upset that so many people under 50 seem to be getting this Cancer and just wish we knew why. You are at a good Hospital for CC and at this point the main thing is you have options and the word we look for is shrinkage as after shrinkage there may be more options! I found that being strong is the best way to get through this and your strength will hold everyone else together as well.


                                         I asked for strength.
                     God gave me difficulties to make me strong.
                                         I asked for wisdom.
                              God gave me problems to solve.
                                        I asked for prosperity.
                         God gave me brawn and brain to work.
                                         I asked for courage.
                           God gave me dangers to overcome.
                                         I asked for patience.
            God placed me in situations where I was forced to wait.
                                         I asked for love.
                     God gave me troubled people to help.
                                         I asked for favors.
                               God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed.

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: Introduction - Tina R.

Tina,

I just wanted to pop in and say hi.  My name is Darla and we have many things in common.  I am 48 years old I have stage 4 cc and it is also inoperable.  I have four children 23,22,20 and 13 and two grand babies that are 4 and 3 months.

I was diagnosed in August and am also going through gemcitabine and cisplatin right now.  I had two series of (6 weeks) and I go in for another cat scan to check for shrinkage on Thursday.

I also found that after being told the diagnosis you become very overwhelmed, but also I have found so much hope and so many people and it seems like you go through grieving and so many mixed emotions.  I think it is wonderful that you have a supportive husband and family to help you through this!! That makes all the difference in the world.  My husband was by my side all the way through the hospitalization and all chemo treatments thus far. 

Keep your chin up and know that there is so much hope out there.  I will keep you in my thoughts and prayers.

God Bless you,

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Introduction - Tina R.

Thanks to Lainy, Cathy and Darla for your replies to my introduction, I appreciate your support and prayers.

Re: Introduction - Tina R.

Hi, Tina, I am wondering how you are feeling on the Chemo so far? Just remember this family is here for you also and sending best wishes. Be strong and please keep us updated!

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: Introduction - Tina R.

Hi Tina,

I justed wanted to welcome you to this site. I am very sorry you have been diagnosed with CC, but you have found the best place to be. My daughter, Lauren, age 26 has CC. She has been through the Gem/Cis and had 5FU with it. If you have any questions about that chemo, I may be able to help. You say you are inoperable, but that can change. Lauren had very significant shrinkage while on the chemo you are on now. I hope you continue to let us know how you are doing, share your feelings, and ask any questions you may have. We are all here to help. Good luck to you.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

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.