1

(10 replies, posted in Blogs)

Katherine - Your mother sounds like a strong person who did all she could to remain with her family.  I'm sorry for your loss and pray you and your family find strength and peace in the days ahead.

Juanita

2

(4 replies, posted in Pain Management)

Lisa - I agree with Jeff that this is not unusual.  My husband never experienced any pain during his illness and, even during our grief over losing him in March '07, we have always been thankful for this.  It must have something to do with where the tumors are located.  I pray you remain pain-free--and that you win your battle with this horrible disease.

My prayers are with you,

Juanita

3

(19 replies, posted in Nutrition)

Ted-
As to your question about Ambrotose-my father-in-law swore by it.  He was diagnosed in 2005 with CC and unfortunately just passed in March of this year.  He said that in made him feel like a new person-more energy, better appetite, better attitude-just a better overall feeling.  In his last few months, he was unable to take anything by mouth and asked me to investigate the use of Ambrotose intravenously.  I called Mannatech and they said they had heard of it, but could not give me any information other than that.  I believe it helped extend his life and also improved the quality.

Chris

4

(8 replies, posted in Introductions!)

Dear Father's daughter,

     I remember the chaos.  Yoy will learn to handle it!  I have Dr. Lenz's info(sorry I spelled it wrong the first time) and also another Dr at UCLA.

Dr. Heinz-Josef Lenz
1-323-865-3955
www.lenz@usc.edu

Dr. Ronald Busuttil (UCLA)
1-310-825-5318
1-310-825-6301

     Dr. Busuttil is a surgeon , but he has a very knowledgeable team working with him.  He doesn't have the same 'bedside manners' as Dr. Lenz but he has experience.

Hope this helps,

Chris

5

(8 replies, posted in Introductions!)

Dear Father's Daughter,

     Sorry it takes all day for me to reply, but I work nights and that is when I spend most of my time on the computer.  Wow! You sound just like my wife and I when we were told of the CC.  We felt like we could spend 24 hours a day gaining knowledge and it was exhausting.  Be careful not to drive yourself crazy by trying to absorb everything at once.  It is easy to forget about yourself during this time, but you need to take care of you as well as help your dad. 
     My father in law's cancer was near the junction of the two bile ducts, the tumor was borderline between intra and extra(that was my take on the doctor's explanation).  It sounds like marylloyd is more knowledgeable about the topic of radiation than I, but I will share what I do know.  For most people, I believe, quantity of radiation is not of much concern.  For my fil(father in law), it was of concern for this was his third primary cancer, and he had received radiation in the past(he  has had stomach cancer and lymphoma starting in the 90's, which shows he was with us for a long time even with these cancers).  We never experienced radiation causing nausea, only chemo which pretty much wiped him out for a couple of days after each treatment.  Whatever may cause him to be nauseous can be counteracted by medicine.
     As a family, we always had a positive outlook regarding CC, including my fil.  I think positive thinking has healing powers-the mind can convince the body about many different things(that sounds alot better in my head than it does on the screen but I hope you get the meaning).  My fil wanted to fight as long as there were still options to possibly get him better.  He was sick, fatigued and sometimes nauseous, but he felt good most of the time, until the final month or two.  When a doctor would tell us, "this is all we can do", we would consult with someone else and sure enough, there was something else they could do.  So don't take one doctor's opinion as gold, each doctor has there own way of doing things, and some are more up to date with new medicines, treatments and clinical trials.  The doctor that gave you a timeframe on your father's life is making a guess, maybe an educated one, but a guess nonetheless.  My fil's was a stage IV by the time we found out, it sounds like you got a better jump on it than we did.
    There are many 'natural' ways (that some people swear by) to help him through this and if he chooses not to seek medicinal treatment, he might want to try some of these(this I know very little about).  As marylloyd said, good nutrition cannot be streesed enough.  You want to be as healthy as possible in all aspects to better fight this. 

Hang in there,

Chris

6

(4 replies, posted in General Discussion)

Jean-without putting a damper on things, my father-in-law passed away march 5th-he had been unable to take anything by mouth and was on TPN.  It was infection that took him.  As for the Ambrotose-is is absolutely not a substitute for chemo.  you are correct-it is a nutritional supplement that seems to help many with various ailments.  Hope things are well with you.

Chris

7

(4 replies, posted in General Discussion)

Ted-Sorry for the slow response time.  My father-in-law said that it made he feel "new again" with increased enery levels, appetite and just a general sense of well being.He knew quite a bit about the make-up of the supplement, unfortunately I do not.  I do know that it replaces essential sugars in the body.  He had friends with many different types of ailments that benefitted from the use of Ambrotose.  The manufacturer's name is Mannatech or Mannetech-I am not sure of the spelling.  Hope this helps.

Chris

8

(8 replies, posted in Introductions!)

Dear Father's Daughter,

     You are already headed in the right direction!  There is large amount of information on this site to help you.  My Father-in-law passed away March 5th-the infections proved to be too much for him.  It could not have been more peaceful.  He had everyone with him that he wanted when he took his last breath.  Although it is a difficult time for all, we are truly blessed to have him as long as we did.  Now back to you and your Father.  Gain as much knowledge about this disease as possible.  As I viewed the various websites, it seemed the prognosis for people with CC is less than desirable.  Keep reminding yourself that no two cases are exactly the same.  There are many who go on to live a happy, lengthy, cancer-free life!  In hindsight, I feel we should have sought out a CC specialist in the beginning.  We did find one, an excellent one, but he was not in our insurance plan and at the time we thought our oncologist was doing everything she could.  His name is Dr. Lentz and he is based out of USC in Southern CA.  I do not know where you live, but I'm sure there must be a specialist somewhat near you. 
     Has anyone talked about surgery?  If the cancer hasn't spead(metastasized) to other areas they may be able to remove the damaged areas of his liver.  Chemo(therapy) and radiation are commonly used in cancer treatment.  Chemo involves a medication taken orally, intravenously, or both.  It kills(for lack of a better word) cancer cells.  Radiation involves aiming  "laser" beams at the tumor itself to reduce its size. 
     I am guessing that your Father had at least one of his bile ducts blocked by a tumor, which is why he was jaundiced and had the stent inserted to assist with draining the bile.  Plastics stents need to be replaced more often than metal ones.
     I have so much more to tell you but you are probably overwhelmed already.  Keep your spirits up and remember that each doctor you meet has his/her own opinion on treatment and recovery so do not be discouraged by negativity!  Keep posting, others with much more knowledge than I will respond and I will be happy to keep helping you with whatever you need.

Chris

9

(4 replies, posted in General Discussion)

Has anyone heard of Ambrotose administered intravenously?  My father in law has been taking it for a while(powder form) and says it works wonders for him.  He is no longer able to tolerate anything by mouth.  He said he read an article awhile ago on this subject and asked that if it came the point where he is right now he would want that.

Thanks,
Chris

10

(31 replies, posted in Introductions!)

Carolann-

Stents have worked wonders for my father in law.  As with any procedure involving a foreign object being placed in the body, there is a risk of infection.  The stent will most likely need to be replaced after time-the frequency is usually determined by whether the stent is metal or plastic.

11

(31 replies, posted in Introductions!)

Carolann-

My father in law is currently hospitalized with a quite serious infection, in addition to edema in his extremities and a few other complications.  We are hoping to have him back home soon.

Thanks for asking,

Chris

12

(31 replies, posted in Introductions!)

carolann-feel free to contact me with any questions or concerns you may have.

Chris

13

(31 replies, posted in Introductions!)

carolann-I was in your shoes 1 1/2 years ago.  Father in law admitted with pain, jaundice, anorexia(not eating).  His cancer was classified as stage IV.  That was 19 months ago he is still here now.  Prayer works.  You might have a rough road ahead so stay strong and informed.

Chris

14

(8 replies, posted in Introductions!)

Hello my name is Chris.  My father in law was diagnosed with cholangiocarcinoma(mets to the abd) in August of 2005.  After a 19 month rollercoaster ride, he is now dealing with septic shock-with an initial WBC of 43(the highest I have ever personally heard of).  Through the grace of God, he is responding to antibiotic therapy and hopefully will once again return home to further fight his battle and experience a better quality of life.  Cancer is not new to Dan.  This is his fourth primary cancer.  He has been told before that his days were numbered.  Each time he overcame the odds, resulting in a stronger man-maybe not physically but spiritually.  He has a passion for life like no other.  Even on his darkest days, he awakes wondering how he can be of service to others, unconcerned about his own physical wellbeing.  I have yet to meet a better rolemodel.  This man has taught me things that my own father was incapable of teaching-and for this I am ever so grateful.
     I chose not share each heartache and milestone in this post, but our family has experienced enough to write pages and pages. I will be happy to share what we have dealt with to anyone that has questions or comments.  We have been to numerous different doctors, dealt with different types of medication/treatments, mets, stents, chemo, radiation, TPN, anemia, ulcers, infections, edema, low albumin levels, drains, fluid in the lungs, cardiac abnormalities, internal bleeding, organ failure, etc.  If I can be of any help to anyone out there feel free to contact me via email or this site.

Good luck to all,

Chris

15

(8 replies, posted in Introductions!)

Dear Wirlgigs,

I too am new to this site.  My father in law was diagnosed with cholangio(mets to the abd) in late 2005.  I will further introduce myself and share my family's story shortly.  I read your post and the first thing that came to mind was get a second, third, fourth opinion.  I cannot tell you how many times we were told there was no hope, only to hear from another doctor that there were other options.  YOU need to be proactive in this fight.  Question EVERYTHING that is told to you, read up on the disease and become knowledgable so that you can 'talk the talk' with the doctors.

Chris