1 (edited by thormagic Wed, 05 Sep 2012 19:05:40)

Topic: my mother, my best friend

As I read so many of your messages I realize that we are not in this alone, although sometimes I feel we are the only family effected with this horrible disease.  Here is my story:

My mom is a very healthy, fit, and an active 79 year old woman who has never had any medical problems. My mom’s first sign of what we now know is cholangiocarcinoma, was constipation and bloating.  She complained about this for a few weeks, I gave her over the counter meds and told her that as we get older our system changes.  She was very concerned because she has never had these problems before.  After unsuccessful attempts to correct her problem she went to her doctor. She has been going to the same doctor for over 25 years, and it was her doctor who had the foresight to run blood work on mom, she ran a CA125 for ovarian cancer.  This came back very high, which began a series of test.  Even thought my mom’s cancer spread and was not found until it was stage 4, if it were not for her doctor to run this initial blood work she would have been jaundice before we knew anything.  To this I owe my mom’s life to this doctor.

Within a few weeks my mom diagnoses was confirmed by a series of CT scans, biopsies and PET scans.  Her cancer originated in the bile duct, and spread to her liver (klatskin tumor 4.7 cm) left hepatic lobe.  There are over 15 other areas that it spread to within her stomach lining.  Stage 4 and it is inoperable. She has now gone through 11 chemo treatments, 2 weeks on 1 week off with Gemzar and cisplatin.  The first CT scan after a few months showed little shrinkage but some, the second CT scan a few months after the first showed better shrinkage of all cancer cells in her stomach, but not in her liver. We are having problems with her blood levels because the chemo is so strong, she had to get a blood transfusion last month. 

She is so amazing and strong.  She is handling everything so well and has the most positive attitude. She is holding me and my three sisters together; we are getting our strength from her so that we can be strong for her and support her thru this. 

My question is at what point I start going to other hospitals that specialize in this particular cancer, consider alternative medicine, check into clinical studies etc.  The doctor she is seeing in the Fort Lauderdale area is great, and right now we are seeing a decrease in her cancer.  I am just not sure how much more to do now, I keep hearing the words “quality of life”.  But I want my mom to live even if her quality of life for the short term is to save her life and to do whatever it takes.  I also wonder if anyone has had any good response to certain types of food and nutrition that help keep blood levels high. She is also losing too much weight; she weighed 127lbs now she is down to 114.  Any suggestions on weight gain.

Re: my mother, my best friend

Hi,

the answer for your question" My question is at what point I start going to other hospitals that specialize in this particular cancer, consider alternative medicine, check into clinical studies etc. " is NOW.
The treatment triangle approach to cancer are surgery, chemotherapy and radiation intervention.

John Hopkins will be a good place to start for an overall assessment of your mom's situation.So you will understand the scope of your mom's illness.
MASS general Hospital is also good too for  a multidisciplinary review of your mom's case.
But my best bet is MD Anderson in Houston ,# 1 for the best oncology clinics and hospitals in the world for your mom.

I am not a doctor, I am just a patient, but base on what I can understand what you wrote on this message board, it seems to me that  systemic treatment ( chemotherapy) may be your mom's only option at this point in time.
Gem/Cis  treatment will affect the kidney function esp. after more than  6 cycles of treatments since the chemotherapy side effect are accumulative.
Gem/Cis will also affect the blood cells including WBC,RBC and platelets and that is why I think your mom needed the blood transfusion.

I am a patient of this cancer for 39 months now. speaking from a patient's point of view, I will avoid Cisplatin at all cost,I will avoid clinical trials phase one studies to the point that "quality of life" will be my main concern. but that is just my opinion as a patient and not as anything else. I say this because sometimes caregivers will try anything for their love ones but the ultimate control is not in our hands but in the hands  of the higher authority.

In short, it is tough as a patient  to endure any chemotherapy and quality over quantity of life is acceptable to me even at my age of 63 . I hope my sincere approach to this cancer will not offend you in any way ,but if so, I am truly sorry.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: my mother, my best friend

Dear Thormagic, welcome to our extraordinary family but sorry you had to join us.
It sounds like your Mom is doing a remarkable job on fighting this CC especially for 79 years young!  My personal feeling is if you are comfortale with her present ONC and you feel in your gut he is doing the right things why start changing? She is having shrinkage and that is a word we love around here. On the other hand if you just feel you want another opinion you can do that with some ONC's by just sending her test results and asking for a consultation. When it comes to diet and weight loss
it goes with the territory and we suggest that instead of big meals to graze all day long. My husband loved the vanilla instant Carnation Breakfast and I would blend in a banana. This has all the nutrition she needs to take the place of a full meal and can be had even 3 X a day. Other wise I found he enjoyed comfort foods but in small amounts. As for being overly optimistic I like to say "realistically optimistic".  I I am wondering if you and your sister have discussed anything with your Mom and what she thinks.  As for any support groups any hospital should be able to steer you to one. Since CC is so rare I think they would probably tell you to go to any Cancer support group. Tried to help a little here but can't on the chemo as my husband never had it. Wishing you the best and it sounds like you are a wonderful advocate. Please keep us updated on your Mom as we truly care.

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.