Topic: Update on our son, Jeff and questions

Hi CC Family,
We haven't posted an update on Jeffrey since the aborted liver resection. Since then, we have continued with cis/gem through our ONC at UCLA. He is continuing to get more fatigued. We are scaling back some of his regular activities. He continues to work at the job he loves so much but is now down to between half and three quarters time. He continues to bowl through Special Olympics on Saturdays. We are using a wheelchair to helphim when we are doing things that require alot of walking. He still has his infectiously positive outlook and attitude.

We have a second opinion set with Dr. Lenz at USC to explore any possible alternative options.

Question #1: He is due for another stint replacement in his bile duct. That doc has suggested changing to a more permanent metallic stint rather than the plastic ones which need to be replaced about every 3 months. How might this change affect his chemo regime and or other forms of alternative therapies & diagnostic tests?

Question #2: Thin clay colored stools...what is that about? Is that from the CC or the chemo? Last upper/lower GI was back in 10/12 and was clean.

Thanks for your time & consideration.

Please keep Jeff in your prayers. Along with many of you, we continue to pray for a miracle.

We love you guys.

Bob & Nancy
Jeff's Mom & Dad

Re: Update on our son, Jeff and questions

Hello Jeff's Mom and Dad,

I can't give much detailed medical advice but do know clay/light stools is a sign or bile dysfunction of some kind. I've heard metal stents  last longer too but there must be a reason they use plastic temp ones often. Glad to hear the chemo is going well...the fatigue is par for the course and its amazing Jeff is working so much while undergoing chemo.
Jeff sounds like such a cool guy and has a very rich life! I want you to know in keeping Jeff and you both in my thoughts and prayers.
Warmly, Willow

Willow

Re: Update on our son, Jeff and questions

Jeff's Mom&Dad......you can count on us - we are behind your sweet Jeff every bit of the way.  We need each other in the fight against this horrible disease - and we are a united front.
I believe that the upcoming stint replacement will solve the clay colored stool issue.  The average effectiveness of a plastic stint lays anywhere between 30 to 90 days- sludge and debris will collect and a replacement is needed.  Metal stents are considered permanent; once occluded (generally, in about 1 year) metal stents can be cleaned out.  Or, as we have seen frequently as plastic stint is inserted right in to the metal stint. 
Metal or plastic either will be equally as effective.
You go, Jeff, have fun at the Special Olympics.
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: Update on our son, Jeff and questions

Hi Bob and Nancy,

It is nice to hear from you again and thanks for the update on Jeff. He sounds so amazing. I am glad he is still doing the things he loves to do. I'm sorry I can't answer your questions because Lauren has not had either. I hope your 2nd opinion goes well. My prayers are with all of you.

Love,
-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.

Re: Update on our son, Jeff and questions

Bob, Nancy and Jeff, what a dynamic family you are! You are simply amazing. Teddy's stool became lighter when his plastic stents needed changing. Best of luck at the Special Olympics, you already are a HERO to all of us.

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: Update on our son, Jeff and questions

Hello Bob and Nancy,

I have been thinking about Jeff and I was glad to see your update.  I had clay colored stools when my bile duct was blocked (also dark urine).  I assume once the stent is replaced and bile is flowing freely, Jeff's stool will return to normal.

Best wishes to you and on the second opinion.

-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: Update on our son, Jeff and questions

Hi Bob and Nancy:

It's great to get an update on Jeff. I know I've said it before, but I am simply amazed by his strength and positive attitude. He is certainly an inspiration to all of us fighting this disease.

Having had my share of stints, and transhepatic drains, I'm going to agree with everyone else here that the thin clay colored stools are a decrease of bile in the bowel. Most of the color in our stools comes from bile, and it also is critical to good digestion (which could also explain the thin stools). I assume a new stint will take care of everything. Although I'm currently stint and drain free, my bilirubin numbers still fluctuate. Dr. Lenz put me on Creon (enzyme) and probiotic, which has really helped my digestion.

I'm glad you're getting a second opinion. Even if he simply agrees with current treatment, the consultation can bring peace of mind. By the way, a bonus  with Dr. Lenz is you also get his nurse practitioner, Taline. She is fantastic. Jeff will love her...and so will you.

Mark