1 (edited by jeff'smom&dad Wed, 03 Oct 2012 16:10:06)

Topic: Introductions - our first post

Dear CC Family,
We are new and while we are very sad to join this family, we are also overwhelmed by the encouraging support shared within the group and the amazing amount of information concerning treatment options. This is our first post and I’m not really sure where to start.

Our son, Jeff, was diagnosed with CC on 8/11/12. Jeff is developmentally disabled (although he is very high functioning) and lives at home with us (Mom & Dad). He is 36 years old, works full time and is very involved with Special Olympics.

Our CC saga started when Jeff developed jaundice rather quickly and blood work showed his liver functions were off the chart. Within the week he had an ultrasound and CT Scan that showed a mass in his liver and a blockage in his bile duct. He had an ERCP with a stint placement in the common bile duct which relieved the jaundice. He also had an MRI which confirmed the diagnosis.

We were referred to a liver surgeon (Dr. Busuttil) and oncologist (Dr. Sadeghi) at UCLA. His liver biopsy confirmed CC. We were getting ready for liver surgery when the oncologist ordered a CT Scan of the lungs/chest which showed a surprise mass in the lung. We then went through another round of tests which ended with a biopsy of the lung mass. This confirmed that the tumors were related. While it remains difficult for the doctors to know with absolute certainty where the genesis is, the prevailing opinion and diagnosis remains CC. Essentially, this is where we are at the present time.

Our oncologist is making another pitch to the surgeons (TODAY) for the possibility of surgery as a viable treatment option. Unfortunately now, with another mass in the lungs, Jeff’s condition is now a lot more complicated. Surgery, if it even is a viable option, will now involve a thoracic surgeon for the lung mass and a liver surgeon for the mass in the liver. The odds are against surgery as an option, but we are waiting to find out for sure where we stand. We are preparing ourselves for a firm “NO” with respect to the surgical option. We anticipate that chemo will begin this week or the beginning of next week. I don’t know or remember the names of the drugs.
Over the years, Jeff has had more than his share of medical issues and challenges and has overcome them or found ways to compensate for them while maintaining his happy, sunny, never-complaining and stoic disposition. (If attitude alone could cure, Jeff’s tumors would be gone.) I can’t count the times where doctors or nurses have told Jeff “I wish all my patients were like you, Jeff”.

Faith has always been important to our family and we continue to pray for a miracle. Please join us in praying for my son.

Please share your experiences with us. We know the road ahead is going to be a bumpy one. Any advice, words of wisdom or insight as to what lies ahead will be deeply appreciated.
 
Bob & Nancy (Jeff’s Mom & Dad)

Re: Introductions - our first post

Dear Bob & Nancy, Jeff's Parents, welcome to our extraordinary family but like you say we are sad you had to join us. Jeff's attitude is remarkable. IF they say no to surgery at least you still have the option of Chemo and options is good. I always say we try to remain realistically optimistic. You have come to the right place for support, advise, love, caring and for even venting! Again, welcome and please keep us updated on Jeff.

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: Introductions - our first post

Hello Bob & Nancy,

Welcome to the site but like everyone here, I am sorry you had a need to join us.  You will find a great deal of information and support on this site.

Sounds like you are doing what needs to be done to put a plan in place to treat this cancer.  You have become cancer fighters!

I am an almost 3 year survivor of CC, so there is hope.

I am sure others will chime in but I wanted to say hello and welcome.

-Randi-

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

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Introductions - our first post

Bob, Nancy and Jeff- I too would like to say "Welcome and sorry you had to find us". I am also a CC survivor, 3 years and 4 months cancer free. I have an amazing story to share, please read it at www.catherinedunnagan.com under the telegraph column, there is HOPE!
I look forward to hearing and sharing Jeff's story.
Lots of prayers and HOPE-Cathy

Re: Introductions - our first post

Jeff'smom&dad...I don't have much to add to what has been said by the others, but I also wanted to extend a warm welcome to you.  Jeff sounds like a strong person; has loving and supportive parents and a great team of physicians.  I wish for good news heading your way. 
Hugs,
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: Introductions - our first post

Hi Bob and Nancy,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what Jeff is going through right now. As you say, your son has had far too many medical issues to deal with already in his life and this latest one is most unwelcome indeed. It sounds like Jeff is a real trooper and what a great attitude he has. And what great parents you are as well.

I am glad that you have joined us all here as I know that you will get tons and tons of support and help from everyone here. There is not much that I can add already to what the others have said to you, but I wanted to welcome you here. I so hope that you keep coming back here as you around people who know what you are going through. Please let us know how things go and know that we are all here for you all as well.

My best wishes to you all,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.