1

(20 replies, posted in General Discussion)

Thanks for all the great advice.  Had them placed last week Thursday, went home the same day at 8pm  never got pain relief.  finally went back in on Tuesday for another work up and long story short saw that the tube had turned over on itself and was hitting up against my diaphragm.  I just knew I had pneumonia because I couldn't take a deep breath.  So back to IR to  fix it.  came home yesterday.  it is still sore the right drain, I hope it better pretty quick, I'd rather birth a baby than go through  this again.  UHHGG

Hi all, hope everyone had a great new years.  I haven't been posting much because I've been the hospital with bile drainage issues.  I had my 6th ERCP to try to get stents farther up the ducts, however they cannot get them high enough.  So next week I'm having percutaneous drains put in.  Any experience and advice about this would be greatly appreciated.  Love to all, Denise

What do they do in portal vein embolization?

4

(3 replies, posted in General Discussion)

First question:  I have had unexplicable fevers twice now.  Somewhere around 2 in the afternoon I will start feeling bad and by the end of the evening I'm up to 102 fever, it will last a day or two and then gone.  Last night I had 101.8 and this morning--gone.  It's wierd.  Has this happenned to anyone else?  What could it be?  Probably should have gone to ER but didn't want to go just the hear them say "it's probably viral" and send me home spending $150 copay.

Second question:  Is it an okay option to do nothing and just "watch" this tumor and cat scan every 8 weeks?  I feel like we should be doing something, but don't want to do something just for the sake of doing something.  What do ya'll think?

5

(4 replies, posted in Members' Cafe)

Okay, so some humor.  My husband Troy came up with an idea for a symbol for cholangio.  Just keep in mind he has a wacky since of humor.  He thinks it should be a brown onion because when you think of liver you think of liver and onions.  How about that?  I say he has too much time on his hands.  But this is how he deals with all this crap.

Hey everyone, it's me, Denise, it's been a while since I checked in.  I went to MD Anderson the first week of November.  They did a CT scan and it showed the tumor has not grown or spread and it showed necrosis.  So their recommendation is to watch it by doing a ct scan every 6 to 8 weeks.  If is shows any growth or movement it's back on chemo.  So we are doing nothing until January 6th when we do another scan.  I'm back to work and loving it  I'm totally asymptomatic.  I did have to have the stents replaced Halloween week.  They could only get one in because one of the ducts was too constricted.  Not sure why that is, but I hope it's cuz  of the radiation.  So here is my question:  is it normal to not be able to talk to family and friends about the possibility of my not surviving this?  I feel like I have no one to talk to about it.  No one wants to hear it.  They are still thinking positive.  I am too, but occasionally I feel like I need to get it off my chest.  So, I've been crying some by myself.  What's the deal, am I crazy?

Well the benefit was great, I am blown away by everyone's kindness.  They raised over $6000 for us.  We can get a second opinion now.  We are going to wait till the next MRI to see what it says before going.  That's a month and a half away.  Okay now for a question.  I had an email sent to me today regarding "cellular memory".  Basically it's assertion is that every disease especially cancer occur because of our cells are remembering and storing internal stress from previous trauma.  And that if you pay $199 they'll teach you the technique to change your cell's memory.  Anyone ever heard of this.  It makes some sense to me since is has been a long time established fact that stress can cause disease.  The fact that they want $200 for the info is disconcerting.  What do ya'll think?

OH YEAH!!  ANC is 2600!!  So I got chemo and I get to go the benefit Saturday night.  I fell asleep on the couch and then moved to bed, now I'm wide awake so I just decided to check in.  I'm on my decatron high!  But gotta get to sleep.  Thanks for this great place to come to share.  I see breast cancer stuff all over Mayo when I'm there, and I must say I feel left out.  there is nothing locally for us, so I'm so grateful for this group of people.  Good Night!!  Or should I say Good Morning?  Denise

Hi Shari, I'm sorry you are going through this crap.  I have asked myself why this can't happen like to murderers or child molesters instead of good people.  But you just go with a pity party we all deserve one every now and then.  Then get back in the fight.  Thanks for sharing, it helps me know I'm not just being a baby when I have a breakdown and that it happens to others too.  Your go girl and keep on keepin' on!  I saw a shirt at Mayo the other day worn by a fellow cancer patient.  It said "Suck it Cancer"  I thought I wold fall out laughing.  I feel like saying that every day.  You can too!!

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(14 replies, posted in Members' Cafe)

Hey Kris, I'm a karaoke junky too.  I did a contest once too, but didn't make it.  I sing alot of Lady Gaga, and one of the judges hated her, oh well, it was a blast anyway!  Sorry you didn't make it, it's all about having fun.  Good for you that you get out and go.  Denise

Well, I haven't been around on  the forum lately, things are moving along.  I feel useless and want to go back to work, but I just don't have the stamina.  I have had three rounds of chemo and by the third day, I am in bed feeling like crap.  My counts have bounced around some especially my potassium level.  It was good today in the normal range, but my wbc count was very low putting my ANC at 1100, which is almost neutropenic.  I'm supposed to have chemo on Friday, but if counts go down any further it will be held.  Some coworkers and friends are hosting a fund raiser for me on Saturday night where there will be a silent auction, 50/50 raffle music, dancing and of course karaoke as I am big into that.  I hope I'm going to be able to go.  I had an MRI yesterday to see what the radiation did to the tumor.  It showed no new growth, but the tumor has not changed.  It has only been 5 weeks since the SBRT, but was hoping really bad that the tumor had shrunk enough to operate.  Well, no such luck.  So it will be rechecked in  two months.  We were all some deflated and upset by the news.  CANCER SUCKS BIG TIME.  I hate it!

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(6 replies, posted in General Discussion)

Thanks everyone, I'm worried about stamina as we work 12 hour shifts.  May be back part time.  Love getting out playing golf again.  It was great therapy.  I would play every day if I could and we could afford it.  Not a cheap sport.  Fingers crossed for Monday.

13

(6 replies, posted in General Discussion)

Hi all, well finished the five days of SRBT, went great.  The radiologist said he felt "very good" about how hard he hit it.  I saw the Oncologist today and the plan is to start Gen/Cis on Monday with port placement.  I'm feeling pretty good except getting tired more easily.  We played golf on Sunday, but I could only play 15 holes before I had to bag it...of course it was 100 degrees outside too.  Anyway, Here is my question of the week.  I am on short term disability at work and was wondering how to decide when to try to get back to work?  I feel so useless lying around doing nothing.  I want to get back to work as soon as possible.

So, I'm new at CC, but my experience with CTCA was not great.  Thankfully I have a Mayo clinic in my hometown, but wanted a second opinion just in case, but CTCA took my insurance information and didn't call me back to four or five days to which they said my insurance didn't pay enough so they wouldn't even look at my case.  They really ticked me off, I wouldn't go there just because of that.  Besides what everyone else has said that they don't treat a lot of CC....just my two cents.

15

(2 replies, posted in General Discussion)

Hi all, well I started radiation with SBRT today for five days, but I wanted to ask about nutrition,  what has been everyone's experience with what's good to eat and what we should avoid eating.  Any input would be great.  Thanks, denise

16

(29 replies, posted in Introductions!)

Well, we met with the oncologist today, he says that because of where the tumor is he would only suggest the chemo right now for nine weeks and then see if the tumor shrinks, there is no metz that they can see, but the tumor is pushing  into the right side of the liver and that's why they can't operate, it has to move away from the right side so they can resect the left. 

We are trying to get to cancer treatment center of America, but they have not gotten approval from insurance yet....man that really ticked me off....I'm fighting for my life and your worried about freakin' insurance, are you kidding me????  Mayo wants to start chemo asap, but I really wanted to seek another opinion first, but don't want to delay treatment unnecessarily.  I have three kids, all teenagers, my 15 year old daughter lives full time with me and I had to tell her about the diagnosis, we cried and she and I and her stepdad had a nice evening joking around and trying to forget this stuff for a few minutes.  My other two kids are with their dad and I'm dreading telling them.  My oldest son had leukemia when he was 4,  so he is not going to take this well.  My youngest won't really get it, I hope to tell them in the next couple of days.  Any advise on that would be appreciated.

So, sorry I'm rambling, but now I'm considering Moffitt, since it is close to me, but I'm afraid that they will say the same thing that Mayo is saying and then we wasted precious time.  What do y'all think????

17

(29 replies, posted in Introductions!)

We got the call from the surgeon at Mayo yesterday, it is indeed choangiocarcinoma.  Hopefully, we will see an oncologist at Mayo Tuesday if they can get us in.  Chemo and radiation is first up to try to shrink it before surgery can be done.  Even then he said that if it didn't shrink in the right place, i.e. away from the portal vein it would remain inoperable.  So what's the chemo of choice?  I'm ready to get it on!

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(29 replies, posted in Introductions!)

They said that I am not a candidate for transplant.  I'm not sure why?  Of course we thought of all kinds of questions after the fact.  Like, if the tumor is around the portal vein, why not take it all out and just do a bypass vein, it's done all the time with aorta and other coronary arteries.  Who will be doing the biopsy?  Is the surgeon I saw or some guy in special procedures?

19

(29 replies, posted in Introductions!)

They said that I am not a candidate for transplant.  I'm not sure why?

20

(29 replies, posted in Introductions!)

Thanks everyone, so the spyglass came back as "atypical", but no decisive diagnosis.  So tomorrow I'm at Mayo for a needle biopsy.  I really wanted to avoid this because of the possibility of spilling cells.  But I can't start treatment without an affirmative diagnosis.  Anyway, any advice is appreciated.  Marion, thanks for the link, the mayo clinic is where a I am right now, but the links you posted didn't work for some reason.

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(29 replies, posted in Introductions!)

Has anyone ever been to cancer treatment center of America?  We keep seeing commercials on tv about it.  They will fly us up there to Atlanta, the closest one to us.  I think I have read on the forum that there is a Moffit in Tampa?  Thanks for all the help.

22

(29 replies, posted in Introductions!)

Thanks for all the advise.  Things have moved along a little bit although still no diagnosis.  The brush biopsy came back negative so the Doctor ordered the spyglass, I had that done yesterday, no results yet but in the meantime had a MRI at Mayo.  We met with the surgeon today to go over the MRI results.  There is a 4 by 4.7 tumor way up high on the ducts.  It is hugging the portal vein but not invading it.  If it is cancer the course of action would be to do chemo and radiation to shrink it before they can operate.  The doctor said it is inoperable at this time because he can't get clear margins due to the tumor hugging the portal vein.  I hate living in limbo, although I saw the MRI there is a tumor there, what else would it be?  So here are my questions of all you great folks, should we look for another opinion....in doing so it prolongs starting treatment.  If it is not cancer, what is it????

23

(29 replies, posted in Introductions!)

Hi all, my name is Denise, I'm  44 and live in Jacksonville Florida.  I have a tentative diagnosis of CC.  So far, there is no liver involvement, no lymph involvement, only on the ducts.  I have had Ct's, MRI and a ERCP with stent placement because the ducts were constricted.  The MD feels the constriction is due to the tumor.  He took brush biopsies that have not come back yet.  I have an appointment on tuesday the 9th with a surgeon at Mayo.  I am told mine is resectable, which I'm happy about.  We are all still in shock as I am an active person with no health risks.  I am an nurse and am very in tune with my body.  Any advise would be appreciated.  I am so scared.