Topic: Introducing myself- a new user

My name is Judy. In July 2005 I was diagnosed with gall bladder cancer which was incidentally picked up when having gall stones removed. After 6 months of chemo and an all clear I was diagnosed with CC when I had rapid onset of jaundice in December 2006. This was on my husband's birthday- great present huh? Since then I have been almost consistently receiving chemo and at present I am having chemo and radiotherapy in combination. It is now 2 years down the track since I heard the word "inoperable". The doctors sa I am doing great. I am generally well except for persisitent blockages which are cleared with stents every so often and I suffer from chronic itchiness. My liver funtion tests are never nomal but CT scans indicate no metasteses. I am in general very positive (although I do have my moments) and my family, particularly my husband, is very supportive. I have worked through this whole ordeal and my work colleagues think I am superwoman. In truth I think I would wallow in self pity if I stayed home. Work occupies my mind even when I am not feeling well. We even had a holiday in Europe for 4 weeks against the doctors advice- but all went well. This is an insidious and horrible disease and although I am generally strong, every so often I wonder when it will finally take hold and my time will be up. I dearly want to survive the 1st 5 years post diagnosis.

Re: Introducing myself- a new user

Hi Judy,

It's great to hear that you're doing so well! The weirdest thing about this disease is how different it is in different people, so you shouldn't ever expect things to happen the same way they did to someone else. I am nearing the five year mark now-- and it's been two years since my recurrence, which was also inoperable.

I have my up days and down days too, but I am always amazed at how well I feel, and how new experiences and new parts of my life are constantly opening up to me. Five years ago, I thought I'd hit the end of my road. Two years ago, I felt sure of that (too much listening to doctors!!) At the moment, my tumor has mysteriously stopped growing again (no treatment), and I'm just enjoying every day to the max.

Your trip to Europe sounds fabulous! What is the next thing you're looking forward to?

Kristin

Peace, hope, and healing to all!

Re: Introducing myself- a new user

Welcome to the wonderful club that no one wants to join! Sounds like you are doing very well under the circumstances. I believe that you will find some good suggestions here along with very upbeat attitudes. My husband had it n the bile duct valve 3 years ago and it returned in April where his duodenum used to be. He had a Whipple surgery which re arranged his whole innerds. We are working on that spot now. He has had a lot of itching from radiation (and in the beginning when he jaundiced) so the radiologist recommended a cortizone cream (any kind) but that is now bothering him. In the past we used Sarma (Walgreen's) and that worked good for bile itching. Stay strong and you are invited to sound off any time you feel the need!

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: Introducing myself- a new user

Hi Judy,
You have a great attitude!!! Best of luck on that 5 year mark and THEN BEYOND

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

5 (edited by marions Tue, 07 Oct 2008 10:06:36)

Re: Introducing myself- a new user

Hello Judy...I would like to follow everyone else in welcoming you.  So glad you had a wonderful trip to Europe and are looking foreward to the next one coming your way.  Which chemo regiment are you receiving and what type of radiation treatment has worked so well for you?  So glad for superwoman to have joined this great CC family.

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: Introducing myself- a new user

Hi back to you all. It was nice to log on and find welcoming replys.
Miraculously I am tolerating the radiotherapy very well. (not sure of the type-but daily for 5 weeks - half way through now)  No skin problems, just a little nausea because the stomach is also getting bombarded. Chemotherapy is 5FU and I have had worse side effects from that in the past when it was administered differently. Of course I am getting very tired but I find the best way to cope with that is to live life normally and accept help from friends and family without guilt.
Having found this site I am surprised at the number of people with this disease considering it is supposed to be fairly uncommon. I work in a hospital lab in Melbourne Australia and there are 3 patients at present with cc who are very sick (as in septic or infected) so there must be more out there that are coping like the rest of us and getting by. Touch wood, there have been no infection issues yet as I know the risk is high because of the blockage problems.
I have to agree with you about the Doctors Kristin. What is it with them? One in particular sounded like I was going to be pushing up the daisies  a year after diagnosis and I think he is a bit taken aback that I am doing so well. When I see him he makes me feel  like I must prepare myself for the inevitable any time now. Fortunately he is only one and there are plenty of other doctors who are very posivie. Keep on enjoying yourself to the max .
I think a positive attitude is very important and I am encouraged by reading about others on this web site that are doing well and my prayers go out to those who are struggling.
My long term plan is Europe again in 2010. I will get there.

Re: Introducing myself- a new user

Judy.....when speaking of 5FU administered differently are you refering to the Xeloday pill?  So happy for the radiotherapy causing minimal problems.  You already are a success. 
I am surprised to hear about the other three CC patients at your hospital.  I was wondering whether you would be able to distribute a few CC brochures to the oncology and radiology department with the hope for this patients to be made aware of us? 
Thanks so much,
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: Introducing myself- a new user

Hi Judy,
I am also working full time 15 months past diagnosis.  I have to work due to single parenthood and insurance issues, but am feeling pretty good except for fatigue (of course).
I'm back on Gemzar/Xeloda after a month off.  My treatment is two weeks on  and one week off.  I had sepsis in early September do to a power picc line becoming infected.  We got the power picc out and a portacath in, so I'm looking forward to fewer infections.
My daughter and I went to Lourdes, France for 10 days last summer.  It was fantastic.  I'd also like to go back to Europe someday, particularly Rome.

Re: Introducing myself- a new user

Hi Marion,
I've had 5FU administered 3 different ways but all intravenously.
First time was bolus 1st week then 3 weeks off. Second time was 48 hour infusions 3 weeks in a row then 1 week off. This time is 5 weeks continuous infusion while having radiotherapy. The last 2 times are thru portacath of course. The side effects have lessened each time. Had diarrhoeae 1st time,  very dry skin 2nd time. This time not much to note. I've also had gemcitabine. Didn'tlike that one at all- chills & rigors like the flu.
I could certainly put up some brochures in the radiation & oncology departments. They have heaps of cancer help advertising up.
Lisa,
You sound like you are in a similar situation to me. We could survive without me working but it helps fund the overseas trips. We also went to Rome when in Europe and enjoyed it very much. The holiday in France also sounds good. How are your side effects? I've taken very little time off work- mainly when having surgical procedures done but have worked through all else. Working takes your mind off feeling sick- unless it is very bad of course.

Re: Introducing myself- a new user

Judy...wonderful  to hear how well you are tolerating the 5FU while the side effects are lessening each time.  You are not complaing about the radiotherapy received...so I am assuming for you to not to have any side effects, either.  You must be looking forward to your next overseas trip.
Hope it to be real soon.  Thank you for your offer of distributing the brochures.  They will be mailed to you, soon.

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