Thank you both so much.  I read the labtest website & it is wonderful.  I spoke to another dr. this am & he reassured me that because my other levels were normal, I had nothing to worry about.  (Although, anytime someone passes away of something, you always wonder).  I do need to address my extremely low ferritin though.  Thanks Again!


I haven't posted in awhile.  My father died of CC back in May .  I know they say that CC isn't heridetary, but I recently had some bloodwork because of fatigue.  My ferritin level was below 1, not even in the range.  My Alkaline PHosphatase was 153 (38-126 being normal). Bilirubin was .30 (fine). The Alkaline PHosphatase is concerning me because everything I've read about AP says that it could read high with bile duct obstruction.  I've never had any pain to make me think anything about my gallbladder.  The dr. wants me to take iron tabs. for a month & more bloodwork.  What concerns me is that possibily the ferritin could be low & the AP high because the iron enzymes aren't being broken down & could build up the AP in the liver.  Can anyone please tell me what AP levels are with someone with CC?  I don't have my father's labs anymore.  I gave them to my mom & it was too hard for her to keep all of the paperwork on his cancer.  I know I probably sound crazy, but this has been worrying me for a week.  My dr. didn't even mention the high AP, knowing that my father died of CC.  Thanks!


(1 replies, posted in In Remembrance)

My father passed away last Thursday, 5/8.  He passed away peacefully at home with Hospice care.  It's hard to believe that just last Sunday, he was still sitting in the living room & talking about driving his car.  It just came on strong early last week.  He stopped eating & was very uncomfortable.  His wish was always to die at home in his own bed & we made sure that was honored.  He was a strong, honest, moral man who will always be my daddy.  Even though he was 86 & we all know we will loose our parents at some point, it doesn't make it any easier.  God bless all of you with this disease & all of you who love & care for those with this disease.


(16 replies, posted in General Discussion)

Heather, I am so sorry.  You & everyone on this board will be in my prayers.  I believe from your posts that Lee is a fairly young man to have CC.  We also got bad news from the oncologist today.   I feel my dad is slipping away, also.  It seems when we get one thing looked at, another is just around the corner.   He is now having the ascites in his abdomen, feet & legs.  I asked the oncologist about CC being a rare cancer & she agreed, but said in the last week, she's had two forty-one year old women diagnosed with it.  It's just very sad.  You & your family will be in my prayers.



(3 replies, posted in General Discussion)

As I said in another post, I convinced my dad to go to the ER for a catheter.  They drained over 2 liters out.  He came home with the catheter.   Monday, we saw an urologist.  He kept the catheter in & gave him Flomax & Bethanechol to stimulate the bladder to empty.  He's not having any problems emptying into the catheter, but the dr. wants him to take these drugs for a week & have the home health nurse take out the catheter next Monday & see if, after 4-5 hrs. he urinates on his own.  If not, he will need to go back to the urologist to have the catheter insterted, probably permantly, as the dr. believes he may have stretched his bladder too much, with all the urine that came out initally with the catheter.  We FINALLY see an oncologist today.  I'm making a lenghty list of ?? to ask.  His ankles are still very swollen.  He is still very much constipated & taking laxatives per the GI dr.  We see her Friday of this week.  It just seems every dr. gives him new meds & everytime we get one thing fixed, it seems another body part has a problem. He says he feels fine except for the constipation problems & has had a good appetite the last few days.  It is so hard on my mom with her RA that she has.  I'm doing everything I can to help.  I am really encouraging them to come & stay at our home, but they won't hear of it.  My husband is a CPA & it's been a rough few months, but finally, I have him home & his help, also.  I just feel fortunate that I don't work & do have the time to spend & help my parents.

I finally convinced my father to go to the ER for a catheter & he came home with it.  Tomorrow, I will make an appt. for an urologist.  Today, when I went to my parent's house, I saw my dad's ankles were terribly swollen & his stomach was swollen much like it was yesterday before they put the catheter in.  I'm now worried about ascites.

jmoneypenny, I've been reading some of your old posts.  You sound like me.  I've been trying to get all the info I can on this horrible disease & I'm so worried, with everything I read that this is "the end".


(3 replies, posted in General Discussion)

My dad has had some bowel & urine problems.  He has seen the GI dr. & she did bloodwork this past Monday.  His bilirubin count is down from 14 in the hospital to 4.3.  He doesn't look jaundiced very much anymore.  Right now his problem is that fact that he is not drinking for fear of urinating.  I am trying to convince him to let me take him to the ER & get a cathater, but he won't hear of it.  I feel that when it gets too bad, he will finally let me take him to the ER.  I was able to finally get all the test results & lab reports from the hospital.  I'm very sad to see the CA19-9 level.   I knew the dr. in the hospital had told us he did the tumor markers blood work, but we weren't  informed of any numbers.  Sadly, the number I am seeing is 18,825.  This seems unreal!  I have been researching the numbers on this test & I find normals are under 40.  I have seen where some people's are in the low thousands, but this is incredibly high.  Has anyone ever heard of a CA19-9 being this high?  I'm fearing the end is sooner that we are prepared for.



(1 replies, posted in General Discussion)

As I said in the intro section.  My 86 yr. old father has been diagonsed with CC.  He has a 4 inch tumor in his bile ducts that is blocking some ducts, but not all.  He had an ERCP, but the dr. found that some ducts were draining on their own, & did not insert stents.  He has had a follow up with his family dr. on 3/24.  He said when he first saw my father on 3/13 his jaundice was around 13, on the 24th, he said it would be more of a 6.  Is there a scale for this?  He does look better.  He spent 6 days in the hospital & is home now.  He was weak & using a walker for the first few days & then for about 9 days, he had been walking fine & regaining his strength.  The last couple of days, he is weak again & having symptoms of a urinary track infection, or possibly an enlarged prostate.  Also, constipation.  We are encouraging him to eat, but he says things just don't taste.  He is eating small amounts & whe he went to the family dr. he weighed the same as when he went into the hospital, so he didn't loose any in there.  I try to get him to drink plenty of water, but he doesn't.  He does like the flavored waters I've been getting him.  He is drinking juices & popsicles.  My dad was never really a "sweets" person & now, he wants sweets all day long.  He's eating candy, baked goods, etc.  My next concern is his blood sugar level.  He has not been in any pain or had to take any pain meds since the first day in the hospital, so that was 3/14.  I think that's good that he hasn't needed any.  I do have a ? about the spreading of this disease.  The GI specialist told us it wouldn't spread, that it would just grow in his liver, making him more uncomfortable with eating & he would gradually stop eating.  Tomorrow he sees a GI specialist that is in the same practice as the one at the hospital.  I'm wondering if this is really a "2nd opinion", as it is in the same practice.  We don't see an oncologist until 4/15.  My dad was diagnosed with prostate cancer in 1995, but at the time, the urologist told him it was so slow growing, to basically not worry about it.  In the CT scan before he went into the hospital it said his prostate gland had "dystrophic calcifications".  Is that cancer?  I'm sorry this is so long, but I wanted to give a little update & also ask anyone here what ?? I should be asking the dr. tomorrow.  My dad wants to ask about an appetite stimulating drug.   Thanks!



(2 replies, posted in Introductions!)

Hello.  My 86yr. old father was diagnosed with CC this past Thursday.  I have been reading the stories, etc.  Here is a little background on our story....My father had major itching on his legs/arms approx. 9 months ago.  His family dr. gave him cream & diagnosed Excema at the time.  Dad had the itching every so often after finishing the cream.  Never went back to family dr.  Approx. 10-12 days ago he had bad cramping & has been pretty much unable to eat.  He did not feel well & went to family dr.  He was jaundiced.  Family dr. did bloodwork & sent him for CT scan.  From there, I finally convinced him to go to the ER.  (Family dr. had said he should, but convincing him was another thing).  8 days ago he was admitted to the hospital.  They did MRI & MRIC tests, plus tumor markers.  The gastroenterologist told me he beleived he had CC.  He wanted to put stents in his bile ducts to drain them & then an oncologist would look at what was believed to be a mass or tumor in his liver.  The specialist showed us this on the CT scan.  He did an ERCP but found some of the bile ducts were draining themselves.  Some were attached to this tumor.  The pancreas was not involved.  At the time, he told me it was a 4 inch tumor, I believe, but maybe I heard 4 cm.  Not sure.  He did say it was taking over 1/5 of his liver.  He consulted with the oncologist.  They believe that the there are too many blood vessels involved to do radiation.  Also, they believe chemo is not an option, because of his age & will not help much.  They told him it was inoperable & gave him 3-9 months to live.  Dr. said the tumor has probably been there 2 years & will continue to grow & take over his liver.  He will gradually feel less like eating & will get weaker.  He has a follow up with the specialist in 3 weeks & sees his family dr. this week.  I'm trying to read all I can & get ?? in order to ask.  I'm wondering if we should seek a second opinion.  We are in the Dayton, OH area & the gastroenterologist that we have had, I am told by people he is the best in this area.  My father, I'm afraid, has resigned himself to death.  I don't know because of his age, if he is a candidate for anymore procedures/surgery, etc.  My mother is 84 & has had breast cancer (is cancer free now, thank God) & has RA.  I am an only child, a stay at home mom & live only 5 miles away.  If anyone has any comments or suggestions, I would certainly appreciate them.  Thank you.