1

(34 replies, posted in Introductions!)

Thanks Joyce, I'll do that.  You all have been very helpful!
Mark

2

(16 replies, posted in Introductions!)

Jan,
I wish you the best.  I just lost my mother to this cancer last week.  The people on this site were very nice and forthcoming with information.  I will keep you and your husband in my thoughts and prayers.
Mark

3

(34 replies, posted in Introductions!)

Just wanted to let you all know that my mom left us during the early morning hours of Wed. Aug. 27th.  She was in a great deal of pain for about the last week or so, slipped into a coma early Sunday morning, then left us a few days later.  She was with me, my father and my other brother and no longer has to deal with this earthly disease.  I appreciate everyone's help and input on this awful cancer.

4

(34 replies, posted in Introductions!)

My mom's speech has been slurred, she's been a little confused and agitated.  The hospice nurse says she's got a build up of ammonia from Hepatic Encephalopathy which damages the brain.
1-Is this common for this kind of cancer?
2-If so, what else can we expect?
3-Is this a sign of things coming to and end?
If anyone has experience with this, I would like to hear from you about it. 
Thanks
Mark

5

(34 replies, posted in Introductions!)

Well my mom has seemingly been turned down by every doctor and hospital now.  She still has some good days sometimes, but it seems her bad days are now outnumbering the good ones.  She's always sick to her stomach (especially the first half of each day), and she does well if she eats 2-3 crackers for a whole day.  Her pain medicine is becoming less and less effective.  They've upped the dosage, but it seems to not help so much.  This is gut wrenching witnessing her pain, nausea and yellow skin and eyes.  I feel so helpless.  I want to help more, and want to make it go away, it's just a bad situation.
Mark

6

(21 replies, posted in Introductions!)

Kara, I am sorry to hear that.  Bless you all.  My heart goes out to you.
Mark

That's great news Carol.  With those treatments..... how has he reacted to them (side effects)?

She's not tried Ensure, but I thought about asking her to try it sometime.  Do they have different flavors (some taste better than others)?

Carol,
Thanks, I guess it's just natural to wonder.  As far as we know, my mother only has it on her bile duct and liver at this point.  But the liver has several large tumers on it.  I never heard back from Duke, but I did speak to a Dr. at UNC Linebarger Hosp.  She only advised that they could try some different type of chemos that my mom doesn't want to try.  She apologized and said that this being such a rare cancer, there's just not a lot of funding to do trials and research.  She said that she knows that doesn't help my family and she wished that there was more they could do.  I've sent her records to Dr. Byers Shaw at the Univ. of Nebraska, haven't heard back yet.  We'll see.  Close to giving up here.  I just wish she had an appetite.  She ate about 4 bites of watermelon for the whole day yesterday.  She does like soft drinks some.... and who am I to discourage that.  Anyway, I'm just left with some new thoughts that hit me from time to time.

Carol, I'm kind of new to this board, so Charlie is still alive and it's only in his liver?  Does he have jaundice?  And if so, how long has he had it and how extreme is it?  My mom is very very yellow.

Not that it really matters or anything now, I guess it's just natural to be curious as to this.  But has any research been able to find out how long this cancer normally grows before it is diagnosed or symptoms arise?  My mom is already in stage 4 as of 2+ weeks ago.  So I'm left wondering, how did this start and when did it start?  Does it take months to grow and spread, or is it years, or does anyone even know?  We just wonder how it started and how long she's had this cancer spreading in her.  Anyone know about this certain type cancer?

10

(34 replies, posted in Introductions!)

Patty, you are absolutely right.  Years doesn't seem to be an option at this point.  I'd be thrilled if she'd make it to Christmas.  Next April would be my parents 50th weddign anniversary.  Yes, I am glad I found this site.... kind of a support group kind of thing.  And I appreciate everyone's concern.  I'll probably check back in a few days from now. 
Mark

11

(34 replies, posted in Introductions!)

I forwarded all of my mom's records and charts to the Univ Of Virginia at their request.  As it turns out here's what the doctors reply was:

I have reviewed the chart of your mother.
Unfortunately she has diffuse disease in the liver and comorbidities (pulmonary embolism) making Photodynamic therapy unsafe. I wouldn't recommend this therapy in her case.
Should you have any further questions, please do not hesitate to contact me.
All the best

Michel Kahaleh, M.D.

Not sure what diffuse means, but I told him in the original communication that she had a blood clot that has been treated for 3 weeks.  This has really burst my bubble.  Trying not to give up here.  Guess I will check with Duke University next.

12

(34 replies, posted in Introductions!)

Joyce, my mom lives in Gastonia, NC (just outside of Charlotte).  That sounds like another possible option and can't hurt to check it out.  I'm a little clueless and figuring why they can normally not operate even if it's spread (a little on bile duct, some on liver, etc).  Seems they could try removing some from both areas, but I'm no doctor.  Thanks for the info!
Mark

13

(34 replies, posted in Introductions!)

Thanks you all!  Tiapatty, I really appreciate your article.  It sounds somewhat promising, and my mom may be a candidate.  I e-mailed the doctor who is over that research, and he has asked me to forward all of my moms records, he thinks she may be a candidate.  I will try to keep you all posted.  Again, thanks for the kind words of you all and your support!
Mark

14

(34 replies, posted in Introductions!)

Hello.  My mother started feeling a little nauseated about two weeks ago.  Then some pain on her right side.  After a couple of days, my dad took her to the ER.  They found a blood clot on her lung, then spots on her liver.  After finding out the colon was free of cancer, they did and ERCP and found that she had bile duct cancer.  Since it was already in her liver, they said that they cannot do surgery or radiation and said that there is no proof that chemo would extend her life.  Her appetite is gone and she only eats a bite or two of food, still feels nauseated and pain on her right side.  She also has jaundice, which when they did the ERCP, they put a stint in that is supposed to help with the jaundice.  The oncologist said there is nothing else they can do for her and will be sending her home from the hospital today.  With the symtoms that she already has, we wonder if it is even too late for a second opinion and the travel involved.  She has to have pain medication fairly regularly already.  The doctor said she has weeks, maybe a few months.  We would like to get that second opinion, but not sure if she would be up to it.  She's already tired of hospital stays.   

So, if anyone has experienced a similar diagnosis, I sure would appreciate any input as to what we can expect and what our options may be, if any.

Thanks,  Mark