1

(7 replies, posted in General Discussion)

It has been a long time since I posted, but everything just started happening so quickly.  My dad was diagnosed on Sept. 17, 2012 with this horrible cancer.  It was causing blood clots throughout him & had already spread when found.  Once dad started feeling bad in August of last year, things never improved.  We prayed hard for a miracle, but it didn't happen like we wanted.  Dad passed away this morning at the young age of 59 and now my life is forever changed and at this time hard to imagine without him here.  I'm so relieved dad is no longer in pain from this cancer that so quickly changed my dad.  We are at a total complete loss right now.  I know many of you have also lost loved ones and are still here today, so I know it must get easier at some point.  I wish we could turn back time, but since we can't I will have to keep staying as strong as possible, just like my amazing, brave, loving father did.  Thanks for everyone's advice and help through this nightmare.

2

(3 replies, posted in General Discussion)

It has been a while since I posted, but I wanted to give an update.  Dad completed his first round of chemo.  He went once a week every other week, for a total of 4 chemo sessions.  Dad always felt better after receiving chemo.  He went back to MDA to get an update.  They found that his tumors had all decreased except for 2 in his liver.  I think they were actually a little bigger.  They also found a new tumor on his spine.  Good news was that his blood clots were gone too.  After dad was given a hearing test from his audiologist he got the ok to continue chemo, which will be this Wednesday.  Dad has still continued to lose weight.  He has now lost 90 pounds since August.  His main problem is not being able to eat.  He said everything tastes like paper & he can't eat more than a couple of bites.  I'm extremely worried about his lack of nutrition & calorie intake.  He has zero energy and mentioned he doesn't even feel human anymore.  It's devastating & heartbreaking to see him in this state.  Before his diagnosis he was just so active & full of life.  Any suggestions on him conquering these eating battles would be wonderful.  Thank you all.

3

(4 replies, posted in General Discussion)

Hi everyone. I want to start off by thanking you for all of your extremely helpful information.  I have listed all the meds and other possible meds for dad to take with him tomorrow.  He has his sencond chemo (gemcitabine and cisplatin) tomorrow and will also be getting the flu vaccine, which worries me a little.  My main concern now is that my dad is unable to sleep at night and only dozes off and on during the day.  His back and stomach pain are just too much.  The recliner is no longer comfy nor is the bed.  Again, so heartbreaking.  With dad still having so much trouble with not eating, pain, and no sleep; this could be very dangerous.  I just spoke with mom and he is now severly constipated from all the meds and she might have to take him to the hospital.  Dad's mood has completely changed and he gets mad easily with mom and can be very stubborn.  Again, any advice on how to help him sleep would be wonderful.  I know mom and dad are going to have to be more aggressive and let his oncologist know that some of his meds are not helping.  Thanks

4

(21 replies, posted in General Discussion)

Thank you so much.  I am jotting all of this down to share with my parents.  This is going to sound very stupid, but I'm still learning, but how many different chemo cocktails are used for cholangiocarcinoma & how do the oncologists decide which to use?  I know, that might be a question they need to ask their oncologist, but I thought I'd throw it out there since so many of you amaze me with all your knowledge on this awful cancer. Thanks

5

(21 replies, posted in General Discussion)

Last thing, I think, but my fear is if he doesn't start eating or drinking these shakes, then his body will quit on him.  We need him to fight and conquer this the best he can.

6

(21 replies, posted in General Discussion)

Thank you for your responses.  This is still so new & hard to swallow.  It's really happened so fast.  Just a little over 2 months ago dad was on the field passing out all star jerseys to the Texas Rangers, playing in golf tournaments & now to see him so weak & pretty much immobile is beyond devastating.  He started having pain when the blood clots started & being in & out of the hospital during all of that he started getting weak.  Soon thereafter he was diagnosed with this & it seemed he immediately went downhill at a furious pace.  He stays in his recliner, but now his back pain is also getting to be too much, so he tried the bed, but that's not working.  I feel so helpless & it's just so hard.  At one point we even tried to get his doctor to prescribe medicinal marijuana, but they refused.  We were hoping it would increase his appetite & mood at the same time.  I don't live in the same town as my parents to go to the doctor appointments, but I'm going to come up with questions mom could ask the doctor.  They get discouraged because they said she always responds with, "it's the cancer."  Thank you all again.  Your responses are greatly appreciated.

7

(21 replies, posted in General Discussion)

Sorry, I forgot a few.  For pain which hasn't helped much is:
Hydrocodone 7.5-3.25 APAP
Patch - fentanyl 2-5mcg HR every 3 days

For nausea: zofron8 mcg hcl

Thanks

8

(21 replies, posted in General Discussion)

Good afternoon.  I'll keep this short & sweet.  I'm starting to do some research on all the meds my dad is receiving & was curious if anyone has had any experiences with any of them that you could share.  My dad has only had one chemo thus far & it was gemcitabine & cisplatin.  His medicine he takes twice a day to help him eat is magestrol.
My dad still is unable to eat.  Before this monster attacked him, food was his life & now he craves something and then can only take a bite or two at the most.  Thank you for any information.  This site is amazing.

9

(6 replies, posted in Introductions!)

Hi.  I am writing this with a heavy heart.  My life completely changed for the worse less than a month ago, when my amazing dad was diagnosed with cholangiocarcinoma.  It's all still so very new and I don't know much about it.  The little I do know, I don't like.  To give you a little more background I'll tell you how it all started.  First of all my dad just turned 59 this past July.  Around the end of July dad started losing his appetite & not feeling great.  He also had some pain in his legs with some swelling.  Dad had a stressful job and kept going and didn't make the time to go in to the doctor.  He knew he had an appointment in late August and figured it was just stress.  On August 15 dad had to go to the ER because his legs were so severely swollen.  They discovered clots in both legs and lung.  At that time they also found a spot on his liver & lung.  The doctors said they had to handle the clots first & deal with the other later.  After several days in the hospital on lovenox shots, dads swelling went down.  They ordered a PET scan for the following week to check out the suspicious spots.  After 2 days, dad was back in the ER with more clots.  This time they scheduled a surgery to remove the clots in his legs and at the same time place a filter in to stop them from going to the lungs.  A few days later he was released.  Dad had the PET scan a few days later.  Then the next day he was back in the hospital with major swelling.  Oh, I forgot to mention, both times he was released from hospital they put him on Coumadin.  He had MORE clots.  They put him on Lovenox again.  Waited for the Coumadin to get out so they could do a biopsy of his liver.  This all took several days.  He was in the hospital about a week.  A couple of days after returning home his vascular surgeon called and said he had liver cancer that was treatable.  We live a few hours from MD Anderson, so we got that process started to get him in.  After a week or so he went there and was shocked to hear he did have cancer, but much worse than we thought.  Stage IV liver cancer (cholangiocarcinoma) that had spread to lymph nodes, stomach, back, lungs, etc & that it wasn't treatable.  We are still in disbelief.  Since all this started dad has lost 50 pounds, is very weak & has no appetite.  He is emotional, as we all are, very down.  He has so much pain in his stomach and back.  He is in his recliner 23 hrs a day.  He took his first chemo last week & did great.  He actually felt good for a few days afterwards & had a little appetite.  He has his second treatment next week.  This is so hard & I figured having this forum would help me through this nightmare.