Daughter In Need Of Advice

Hi

My mother was just diagnosed with bile duct cancer, she is 70 years old. She is in the very last stages. My family keeps telling her she is going to live for many years to come. They want me to tell her the same thing. I've been trying to read all about this cancer that I can. She only weights around 80 lbs. she can't eat or hold liquids down. She starts chemotherapy in a few days. How can she under go this? I'm the oldest child out of four. I want to give her hope but I don't want to lie to her. What can I hope to expect in the next few months? I do feel like we have a good Dr. but my family is in denial.

Thanks, Theresa from Missouri

Hi Theresa,
My dad was diagnosed with bile duct cancer in March 2005.He is being treated at Barnes-Jewish Hospital in St.Louis,Mo.His surgeon was Dr.David
Linehan and he is now enrolled in a clinical trial with Dr.Tan and Dr.Brenner.He is 78.His initial prognosis was poor.He is responding very well to the chemo.He will have a repeat CT scan on 12/5.If things look stable he will get a break from the chemo.Please consider getting your mom to Barnes Siteman Cancer center.Let me know if you need phone numbers.Good luck to you and your family.God Bless.
Kathi

Dear Kathi,

What is the name of the clinical trial? What is the name(s) of the chemotherapy?

Rick

Dear Rick,

The name of the study is PHASE 11 Study of Gemcitabine and Carboplatin in the Treatment of Metastatic or Recurrent Cholangiocarcinoma/Gallbladder Carcinoma.

The physician is Benjamin Tan,MD.The study is being conducted through Washington University Medical Center. The phone number is 314-362-4803.
If you have any more questions please feel free to ask.My dad has ressponded very well.He has had very few side effects.He is still driving every day.He has had a decrease in appetite and some fatigue.We will have more answers on Mon.12/5 after his repeat CT scan.

Kathi

Hi Theresa
I can understand why your family doesn't want to tell your mom the truth but I really think the truth is the best thing. My husband died of bile duct cancer last week. He was diagnosed 15 months earlier. The end came very fast and I find peace with the fact that we were well prepared and had discussed everything practical and emotional during the year he was sick. We always had hope that something would work but were also very aware of the statistics of this horrible disease. I was reading a book about cancer and children last night and it recommended telling the children that "yes, people can die from this cancer but we are doing everything we can to try to help this person live." You can still have hope but face things realistically. You know best how your mother is but I would imagine she either already knows how bad she is or would want to know. She also will need to make decisions about treatment based on her prognosis so needs to know the truth. You might just sit down and ask her how sick she thinks she is and how much she wants to know. The other reason to tell her the truth is so she can get her affairs in order and say everything that needs to be said. I am very thankful my husband and I got to tell each other how much we loved one another many times a day for the last year.
I hope the best for your Mom. Good luck and God Bless.
Susan

When my Dad was diagnosed he was aware of everything happening during everything. My mom and him talked about everything and arranged for what should be done in case something happened. My mom also never left us kids out. We knew almost everything that was going on also. I can't say we knew everything becasue parents are still protective. Being in denile will only make things harder. It doesn't matter what happens...never give up hope on a miracle. Make sure when you tell your mom the truth she knows that you haven't given up hope on her recovery. The hospital in St. Louis is a good one also.

Dear Kathi,

What were the results of your Dad's CT scan?

My wife, Ellen is on her sixth round of XL119 and oxaliplatin. Her December 12th CT scan showed a stalemate except for one lesion on her liver that had grown.

Last time Ellen developed hives during the oxaliplatin infusion. So this Friday, the 23rd, they will infuse the oxaliplatin over six hours instead of two!!! We will be at the hospital all day. When will I start my Christmas shopping? They are also going to give Ellen a different steroid and benadryl before the oxaliplatin.

Ellen is in good spirits as she read a posting on cancer-info.com's gallbladder section which told the story of a five year survivor of stage IV gallbladder cancer. What a lift.

FYI, Dr. Dowlati explained to us how he determines if a clinical trial continues to be effective. During the trial, the total area of measured lesions hits a minimum. Subsequent CT scans are compared and if the total area increases 20% above the minimum, the cancer is deemed to be growing.

Hope everyone recieves the blessings of God this Christmas. We pray for everyone afflicted with this disease. May God grant you His peace during your struggle.

Rick