Topic: Hi I am Terry recently diagnosed with CC

Last April I went jaundiced in two days and went to the emergeny room, I was told then what I had (CC) but ended up in Denver for and official diagnosis and as they couldn't do the stents where we lived, they placed one but didn't have the expertise to do the other.  My common bile duct was completely blocked.  I had surgery scheduled to remove the CC in the bile duct for June (at that time the doctors believed it to be contained to the duct alone and no sign of spreading).  Well I developed necrosing pancreatitus and was life flighted to Denver for treatment.  I had extensive surgery to take care of that which was caused from the placement of the first stent down in our local hospital.  That recovery postponed the surgery for the CC until October 2nd.  Needless to say I was ready for surgery, the doctor got in to remove the bile duct and resect and has found that it has/or already was in the liver.  Chemo is my next phase.  Don't really know what all to expect and am relying on God to carry me through and get me through each day. 

I have 4 young children ages, 8, 10, 12 and 13.  I am 54 years old and married with a wonderful wife.  I have a lot of support but all this is so new and unknown to me.  Look forward to getting to know some others and what to expect with this.
Terry

If looking foward brings you fear... and looking back brings you pain.... Look beside you and HE will always be there...

Re: Hi I am Terry recently diagnosed with CC

Terry,

Welcome, you have come to the right place for help & support. I have only been here for the past month but have gotten a lot of help & support from all of the wonderful people on this site. I really can't help you as far as what to expect as it seems that CC treats everybody differently. All I can tell you is to ask a lot of questions & keep asking until you get the answers. Also do your homework & find out everything you can about this disease.  As things progress & you have more thoughts & questions, feel free to ask as someone here is sure to be able to help.  I will keep you & your family in my thoughts & prayers. For now just take it all One Day At A Time.

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: Hi I am Terry recently diagnosed with CC

Welcome Terry.

I'm so sorry we are all meeting like this.  My mom was diagnosed in May of this year.  I had been lurking on the site and just recently started posting this week.  You can read my story under introductions.

This is an excellent site for support, information and questions.  I believe God led all of us to come here.

My mom is going on Monday for her 4th chemo assuming her blood counts all look good.  So far she has been doing very well.  She is on Gemcitibine (Genzar) and Oxiliplatin.  She receives a small bag (takes about 30 minutes) of Zofran and dexamethazone which is to prevent nausea)  Then we do a 2 hour drip of the oxiliplatin and then 30 minutes of the Gemcitibine.)  All in all it takes about 3 hours.  My mom is 76 and has gone to work the next day each time.  We are supposed to add Nexavar to the mix this coming week.  My mom's cancer is inoperable and she has lung mets as well.

We received excellent information about the chemo and the possible side effects from the nursing staff.  It's overwhelming at the time but they are great at answering questions and sent us home with great information.  (Tons of it!!!)  I would suggest having someone with you to hear the information and look over all of the handouts when you get home.  There are great tips in how to prevent side effects.  One of the things we were told is to take care of your mouth and gums.  Mom rinses several times a day with salt water.

Ask lots of questions!  There are no dumb questions!  Keep a notebook so you can jot down anything that comes to mind. 

I made a notebook for my Mom and Dad to carry with us each time we go.  There is a sheet that can be xeroxed with a list of her medications.  You will always be asked what you are taking.  This is an easy method.  Just hand the nurse the sheet.  My mom has a port  so that makes chemo much easier.  In the notebook I have an envelope so that Dad can keep mileage, parking receipts and lunch receipts.... remember lots of this will be tax deductible.  We keep current copies of her recent blood work and appointment cards.  After we get home, Dad staples the day's receipts to the printed appointment card and drops everything into his medical file for taxes and the accountant.

Try to stay positive.  Lean on your family and friends.  My husband, family and friends have been a rock for me.  I try to do 5 minutes at a time and then do 5 more minutes.  My mom's cancer was an incidental finding.  Since the women in my family generally live to their mid 90's, this was really a shock.  It's also hard in that I am a Cytologist and have been in the cancer field since 1978.

Remember that everyone with this cancer is an individual.  Not everyone will have the same experiences.  Treat yourself gently.

Please know you and your family are in my thoughts and prayers. 

Cherbourg

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Hi I am Terry recently diagnosed with CC

Hi Terry,
Sorry to hear about your tough time.  I was diagnosed in July 2008, and am 43 years old.    I've recently started chemo (finished rount 1 of gemcitibine(gemzar)/cisplatin).   Hopefully it is working.   My side effects have been very mild.   This site is a great place for information.   Stay focused on what you need to do.   My family has been a great support and this website has helped so much also.   I hope you find the support as helpful as I have.

- Suzanne

Re: Hi I am Terry recently diagnosed with CC

Hi Terry,   Welcome to the site.  I've been moderating for this site for two years coming October 10th.  This site has grown tremendously in respect to gaining knowledge on CC specifically.  Knowledge is power.  Don't settle for the day to day routine hear say information.  Members of Cholangiocarcinoma have fisrt hand experience and knowledge, who are more than willing to share.  Also using the Google custom Search above you'll be able to get infor previously shared about particular subjects in dealing with this CC.    Use the links provided above and the websites forum to increase your knowledge. Again, welcome and i personally wish you the best outcome possible.  I continually preach positive attitude and love will take you far.  Also, you have to be your own best advocate.  Your the patient ,your in control.  Pleas don't let them push you to far to fast and burn out your immune system.  Try and keep your platelets,wbc's and rbc's above safety levels.  Weekly labs while doing chemo and monitor yourself from a printout would be great.  There is nothing wrong with holding off treatment aweek or two to preserve your immune system.  Here I am, on my wagon again.  Any questions or if you would like any suggestions or opinions just jump in.

God Bless,
Jeff G.

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

Re: Hi I am Terry recently diagnosed with CC

Hi Terry and welcome to the best little club in the world that you never really wanted to join!!!  Glad Jeff chimed in as he is one of our biggest helpers. He gives excellent advise as do many others but he is like our "mentor". You have come to the right place!

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: Hi I am Terry recently diagnosed with CC

Hi Terry,
Just repeating everyone else's welcome and best wishes on the chemo regime. After reading about your children, let me guide you to the ask Dr. Giles section where he talks about children and cancer.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Hi I am Terry recently diagnosed with CC

Terry,

I am new to this forum also but not new to CC. I was diagnosed in November of 2006 with CC, and could not be resected because of the location of my Klatskin tumor that had spread across both bile ducts at the bifurcation location.

To make a long story short I received a radical treatment for people like myself who can't be resected due to the tumor location, and had cancer treatment by external radiation to kill the tumor, hopefully, and then a liver transplant to completely replace the existing liver. This was truly my only hope for survival. I had this completed at the Mayo Clinic in Rochester MN on March 20th of this year with my daughter Jennifer as the live donor for part of her liver. I am doing well now and headed back to work soon with no complications so far.

I don't know what your financial situation is, or what medical coverage you do have, but you are probably a good candidate for this surgery as I was.

Please feel free to e-mail me Terry, or anyone else for that matter, at raye.field@yahoo.com. Leave me your telephone number and I will get back to you with information and who to contact if you think this would be a good way for you to proceed.

There's always hope!

Raye

I'm a passenger on planet Earth and God is driving.

Re: Hi I am Terry recently diagnosed with CC

Ray.....welcome and thank you for sharing your story.  It is so very important for all of us to hear from people like you who have been able to receive a liver from a life donor and in your case, your wonderful daughter Jennifer.  It gives us hope.  Please, stay in touch.

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: Hi I am Terry recently diagnosed with CC

Welcome Raye----- I just want to say amazing.  The biggest show of love a daughter can give.   I am extremely proud of your daughter and so happy all is going so good for you.  It must have been one tough choice to go the route you did.  My daughter wanted to do the same thing for me ,but with my  considerable amount of mets, it would be taking to much of a risk for her my opinion.  She is a little mad because I said absolutely not.  I explained if it had just been a single tumor it would be a different story.  So, If I'm not mistaken you basically killed off the tumor with radiation and use the good part of your liver and some of your daughters?  I started ay Mayo almost ten years ago with resection.  Mayo has definitely magnified their approach, which is so promising for so many.  I'm glad you were one of the many.  I'm sure others would love to here more of your success story; I know I would.  It is so inspirational to read this post.  Thank You for sharing with us.  I have had radiation to the liver myself but they could not do it all without a donor, plus now with so much mets going on.  All I can do is keep putting out fires sorta to speak ,until it gives up or I wear out.  I truely believe in using the radiation route as much as possible, but after a while I'll have to stop that as well.  I believe in "You Never Know?" and Hope is always in the air.  Your Post just proved to me once again that it's so true.

God Bless,
Jeff

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

Re: Hi I am Terry recently diagnosed with CC

Thank you everyone for the kind words for both my daughter and myself. I am blessed to have had the opportunity for this operation, but as we know, once a cancer patient, always a cancer patient. Hopefully I will make it to that 5 year remission mark and beyond. For your information the 5 year remission rate to this date stands at 86%, which is much better than resection. Five years is my goal, not only for me, but for my family.

I wish for any who read my story you may have as I had the good luck to receive this treatment if there is no option left for you.  Perhaps in the future the work done at the Mayo will accelerate to the point where CC patients will have this procedure, or some form of it, as the means for successful CC cancer treatment. We just never know what God has in store for us, and what He has in store for the future in research for cancer.

I've already had one person ask me about the surgery and who to contact. If anyone else would like some information, or knows someone who should be informed, please send me an e-mail at raye.field@yahoo.com. I will answer you in the best way I know how and direct you to the right people at the Mayo.

IT NEVER IS TOO LATE TO ASK. Never...

In answer to your questions Jeff, yes the radiation treatments were the first stage of the process that was designed to kill the tumor. The second stage for the transplant occurs only, and only, after staging surgery, cancer marker CA19.9 was stable, and MRI/CT have proven the tumor(s) were killed.

My daughter donated 60% of her liver and my liver, gall bladder, and bile ducts were completely removed. A new 'bile duct' was fashioned from a section of bowel and works great. My recovery at the Mayo was 29 days and I went back home to Canada then. My recovery is past six months now and I'm feeling great and I'm stable with my immuno-suppressant called Prograf, which is good. I'm looking forward to getting back to work as soon as possible.

No more jaundice, fatigue, haemaglobin crashes, food and malnutrition issues including weight loss ( I lost a total of 130 lbs. in the first 5 months) , bypass stents, etc., the routine we all know.

Once again please e-mail me for info. or just to talk in confidence if you'd like at raye.field@yahoo.com.

Raye

I'm a passenger on planet Earth and God is driving.

Re: Hi I am Terry recently diagnosed with CC

Terry, You were fortunate to be able to have a resection.  Based upon what I've read on this site it offers the highest probability for a longer life expectancy.  There is a lot of information on this website and I encourage you to ask questions here and to your doctors.  You are the one most responsible for your care so never stop asking questions.  I read many people who have little side effects with chemo.  I would like to suggest you pick up the book Anti-Cancer.  It offers much information regarding diet and foods either feed your cancer or inhibits your cancer. Following what it says can't hurt but only help.  And at this point you need to increase your odds.  Many people have lived many years with this disease so don't be discouraged.
Keep the faith and rely on family and friends (esp on this site) to help.
Rachel