Thank You marions,Gavin and Lainy for your positive messages!
im sorry i havent responded ..alot has happened since my last post. but it was a great feeling to read your msgs at such a low time...thanks for reaching out, you have no idea what a difference it makes..thank you for this

as for All Star..everything you wrote..you were right on the money. my mom is getting zofran for nausea and although she is very much against pain meds but  is taking either vicoden or dialodid. her oncologist recommended a high protein low fat diet because of her chylous fluid, she has been on tpn iv for past 2 1/2 weeks. (she was taking lasix and spirolactone prior to being in hospital, dr took her off because of low albumin and other nutrient levels.
she had her laproscopy done today. suergeon told me she may have weeks to maybe a few months left, he said that her cholangio has matastisized..( i just don't understand how they didn't see this from all the tests she has done in the past month???
this pain is the most horrible feeling..i dont know what to do or what to expect, im trying to remember everyhting else the seurgon told me, but it all seems like blurr now
i dont want my mom to suffer anymore than she has (with more treatments like chemo or radiation). she has been sleeping most of night so far from the anestesia ,,,i just dont know what to tell her when she is completly awake. i dont want her to lose any hope but also dont want to lie to her...
All star, i hope you are doing well, i will pray for you as well as everyone else on here...may God bless you all, and give you strength

2

(24 replies, posted in General Discussion)

Hi Sti,
im glad to hear your wife is doing great (other than her cough). my mom has had Cholangio for the past 6 years. she had been doing well until her cough started last year around summertime. she went to her oncologist, he said it was probably allergies. but the cough persisted for many months. she started taking prescription cough syrup with codeine at night. since around May my mom started retaining a lot of fluid (ascitis). she started going in for regular parasentisis visits, taking average of 4liters of fluid every visit. if i were you i would get an ultrasound done to make sure she is not building any fluid in her lung or abdomen. we have been in hospital for the past month, her cancer has gotten worse, she has a list of ailments now, but it all started with a cough that got worse and worse. i dont mean to scare you and  your wife's cough may be something else entirely different from my mom's ( i hope this is true) but it doesn't hurt to check into it. i wish we had taken my mom's cough more serious and not waited so long....i wish you and your wife luck. keep strong and positive. God bless

Paulina

my mom was 1st prognosed with this cholangiocarcinoma back in 2005.
She had chemo and then radiation the first 2 years...since then it has been Stable. She has been doing great other than the occasional fever and chills. She had ercp to replace Stent every 5 months. ,but other than that she has been strong for past 6 years... until june1 st when she started retaining lots of fluid in belly. Her Gyn had told her this past Jan that he saw a cyst in ovaries that was being checked every few months. It grew in size around April , he did blood work and told us that it looked suspicious of ovarian cancer. We spoke with mom's oncologist, who told us this ascitis fluid she has been retaining has nothing to do with ovaries, that it may be recurring cholangio ..my mom has since done 7 Parasentisis .each time they remove 5 liters of fluid from her. It has become chylous in the past month. Dr says this is blockage somewhere or it may be scarred tissue from radiation done in 2006.
Mom has been hospitalized for weeks at a time these past 3 months. (june-August now) With infections treated with iv antibiotics. She has been put through petscan, catscans, X-rays,ultrasounds....she also has fluid in lungs which causes her to cough constantly, has lost lots of weight, and her strength and spirit is nowhere near what it was only months ago...it breaks my heart to see her like this. It's like this is all starting over again...but only worse now.. We have since gone to doctors in mass general and layhee clinic..one told us that this was the beginning of the end and she may only have few months left( as we were told in 2005, that she only had 3-6 months to live). The other doctor was more uplifting telling us that her body could reverse the ascitis, he suggested do a laprascope through stomach.. since we are in hospital now.( she was admitted to ER with 106 temp and chills, 3weeks ago )

Doctors dont know where leak is coming from, so these past 2 weeks she was put on tpn to bring her albumin levels back up and mailnly to manage the ascitis fluid . we were told that in order to do the  laproscopy, her belly should not have any fluid in it and the only way to rid the fluid from her belly was to do the tpn. so she did, her ascitis fluid is now yellow and not white (chylous) and they only removed 1.5 liters 2 days ago as opposed to the average 5 liters, as soon as fluid was removed, but her belly still looks like she is carrying triplets. she is scheduled for another parasentisis today.
the doctors now tell us of another procedure called lymphoscintography, she is scheduled to do this tomorrow.this is supposed to locate the leak in lymphatic vessell, they will try to seal it and do a laproscope next week. looking for anyone who has had this done or someone in simalar situation..please ...

she is in alot of pain, hasnt slept in days because of constant cough and sometimes even chokes on her fluid,her feet have become swollen, nausea and almost no appetite...these symptoms started only weeks ago...

im getting really scared, been hearing less and less encouraging words from doctors. so far havent heard of patients in similar situation.

May God Bless all of you who are fighting cancer as well as your families, may God give you strength to get through this. Stay strong..stay positive

Paulina smile

Are there any procedures other than scope to rid her body of the ascitis...would really appreciate any help/ advice on treatments...thanks so much. God bless