Hi all,  it's time for my yearly update!  While I haven't had a scan since last April, my doctor gave me clearance at that time to "do what I want".  I can still get a scan every year if I want.  Or every other year.  Whatever makes me comfortable.  And I am not sure just yet what I will do, but I do have to celebrate for a minute.  January 29, 2007 was the date of my surgery and it is a date I will never forget.  Here i am, 6 years later, celebrating my life.  I am happy, healthy and still working at my favorite job (almost 21 years here!). 6 years ago I was thinking about the letters I would write to each of my children for when I was gone.

Keep fighting the fight.  There IS good news out there and hopefully there will be MORE good news in the years to come.  I think of all of you daily and love to hear about all the good scans that have been happening lately.

Hugs sent out to all,
Sue

Good morning!  Here's a follow up to our bowling fundraiser on April 14:

We made $1046 through our First Giving page.
http://www.firstgiving.com/fundraiser/s … hingforsue

We received checks totaling $1350.

I just wrote a check to the CC Foundation for $4331.11 for a grand total of:

$6727.11

My team was wonderful and we ended up with 141 bowlers and numerous people who just showed up to support us, including my doctor and her family!

We hope to be able to make it an annual event.

Thank you,
Sue

3

(61 replies, posted in Introductions!)

Sandie,

I hit my 5 year cancer free anniversary on January 29 of 2012 and I am still going strong!!!  Don't let those statistics get you down. There are survivors!!!!

hugs,
Sue

Thank you all for such great wishes!!!  I feel great.  No real health issues with my liver.  I have to be careful with acetaminiphin (sp?) and can't take ibuprofen (because of my kidneys) so I do live with pain but it has nothing to do with my liver.  My bloodwork is all normal where my liver is concerned.  I have no inflammation or liver pain, just a little discomfort which I figure must be scar tissue, and some acid reflux.  My scans don't seem to cause any questions to the docs and my doc has, in fact, released me!  She said I was welcome to come back in a year, or two years, whatever I felt comfortable with.  Dianne, feel free to ask me anything!

Our fundraiser was a HUGE success!!!  We had 141 bowlers and about 30 others who just dropped by to wish us well and to have a good time!  And, boy, did we have a good time!!!  We hoped to make $3000 for CC.org and came in around $6000!!!!  That includes money from the First Giving Site, silent auction, 50/50 raffle and donations! 

I am amazed at the amount of support we have had and look forward to sending the Cholangiocarcinoma Foundation a check for over $4500!  (Over $1500 has been donated via First Giving and sent directly to CC.org.)

It was a great event and hopefully we will be able to do it again next year!

Hugs,
Sue

Hello all,

Just wanted to check in and let you all know...had my 5 year scan and am cancer-free!!!  What an amazing journey, yes, the awesome roller coaster ride.  For everyone who is fighting, KEEP FIGHTING!!! 

That was actually the better news.  I guess I should have written these paragraphs in a different order!  The good news is it's finally time for our fundraiser tomorrow.  We have 35 bowling teams registered with a couple more "maybes".  We have many people just dropping in to bid on the silent auction items or to just say hi.  Even my Dr. is going to drop by!

If you feel the urge to make a donation (all profits go to CC.org), here's a site that makes it super easy to do so:

http://www.firstgiving.com/fundraiser/s … hingforsue

We have already made about $4000 that will go to CC.org and I am so excited to be able to give back something for all of the "therapy" you have given me over the past five years.

I will let you know how it goes!!!

Hugs,
Sue

6

(39 replies, posted in Members' Cafe)

We had to come up with an email address when we got the internet at home so we took our last name and the first initial of both of our names and came up with cragots.  I think I actually logged in with that username on CC.org at one point, and promptly forgot the password or some such info so I had to re-register.  So, added another S in front so I became Scragots.  That's it, very exciting!  Very interesting question, I have always wondered the same thing!

I love my little car.  I got it a year and a half ago...a bright, sunny yellow VW Beetle!  My grand-daughter named her Honeybug.  I had her pinstriped and then had them add a ribbon symbol just below my door handles. Not only am I a cancer survivor (5 years!) but my son is a Special Forces soldier so the yellow car is a great color choice.  Cancer survivor and supporting our troops! 

As a side note, my son just came home yesterday from his 8th tour in Iraq/Afg/Pak. I am so happy and relieved to have him home.  He lives in N.C. (we are in Indiana) and has a wife and four daughters. 

Hope everyone is doing well.  We are all geared up for the Super Bowl Sunday.  Since our beloved Colts are not playing, guess I'll have to root for the Giants.  The Colts and the Patriots are long time rivals.

Enjoy the weekend!!!

Hugs,
Sue

7

(25 replies, posted in Members' Cafe)

Thinking about you, Cindy!  Good luck and please let us know as soon as you hear anything! 

Hugs,
Sue

8

(16 replies, posted in Good News / What's Working)

Hello all,

Yesterday, January 29, 2012 was my 5th anniversary for being cancer free!  I had surgery on January 29, 2007 at IU Med Center in Indianapolis where the doc removed the right lobe of my liver and my gallbladder.  I am amazed that the time has gone by so quickly. 

My son, daughter in law and little grand-daughter took me and any husband to PF Changs, my favorite Chinese restaurant, for some great food!  They even brought me beautiful spring flowers.

I wanted to send out hope to all or you survivors to remind you that miracles do happen! Keep fighting!

My thoughts and prayers go out to each and every one of you.

Hugs,
Sue

Hello all!

Plans are moving forward quickly!!!  Now Nate (the other person helping on the fundraiser with Angie) has decided we need to get a big name in the bowling alley to play for us (besides our beloved Gypsy Revival) and he wants to just close down the alley and have it totally CCer's!!!  You would not believe how excited and amazed I am at how this is all coming together.  We already have promises of basket donations, a couple more donations on the first giving page (http://www.firstgiving.com/fundraiser/s … hingforsue) and promised packages from the Indiana Ice and our local radio DJ's Bob and Tom!!! 

Thanks to Gayle for asking for forms...they are already in the mail!  If anyone else would like some, just let me know!!!

If anyone wants to come join me, Grover, Cindy (candrews) and all of my good friends for a great cause (and a great time!!!), just let me know!!!

Hugs to all,
Sue

I wish we could get a full contingent of CC.orgers, but I know that we all live so far apart.  Hopefully we will have a big turnout and will be able to donate a lot of money to CC so they know we believe in them and their purpose.  I appreciate all the support we have...from the CC board, Grover, Cindy and all of my friends.  We will keep you all up to date.  You are all a part of this!!! 

Hugs,
Sue

You are all just amazing!!!  Thank you, thank you, thank you!!! Where I was excited this morning to be working on this fundraiser...you have all now raised it to another level!!!  I cannot wait to meet Cindy and Grover and both of their families in April (or before!!!)! I really appreciate all offers of help and all the wonderful ideas for the flier placement!  I will send out PDF files of the flier (or I can send actual copies if you would rather have them) by the end of the week.  Angie (one of my great friends who is helping with the fundraiser) is out of the office today but will be back in tomorrow.  She has the most current flier form.

If anyone else needs the flier in either form, please just let me know.  Maybe we can double our amount and donate $6000 instead!!! 

Ideas for flier placement, prizes, auctions, raffles...anything is greatly appreciated!!!

Thank you all sooooo much!!!  big_smile  big_smile  big_smile

Hugs to you ALL,
Sue

Thanks, Lainy!!!  My ears were burning so I had to come check out what my "peeps" were talking about!!!

I will definitely keep everyone up to date on the bowling fundraiser!  It really is a real thing, bowling alley is booked, live band has been booked, fliers and requests for goodies are in the mail!!!

Here is the link to a First Giving page for donations to CC.org pertaining to the fundraiser.  All proceeds go directly to CC.org thru them. I see NONE of this money!

http://www.firstgiving.com/fundraiser/s … hingforsue

(My good friend created the fundraising site and came up with the name...not ME!!)

If anyone is interested in info on the bowling fundraiser, just let me know!  it'll be held in Indianapolis on April 14th at Woodland Bowl at 96th and Keystone. Let me know if you are interested!!!

I hope I am not breaking any rules on CC.org, please let me know if I am.

And I am accepting ALL ideas for the fundraiser!

Love you all,
Sue

Cindy,

YAY!!!  That all sounds fantastic!!!  Put it on your calendar...April 14, 2012 at 1:00.  It'll be in Indy at Woodland Bowl at 96th and Keystone on the north side.  And you think I can bowl???  I just pretend!!! 

Where are you from? Do you live in Indy? I hope to get Grover and his family to come too!  Convince him when you see him!!!

Hugs,
Sue

Cindy,

FINALLY it has stopped raining!!!  I was going to start growing mold between my toes soon!!!  LOL!!!

Here is a link to my first post so you can read my story instead of me rambling on here with it:

http://www.cholangiocarcinoma.org/punbb … php?id=608

(If it doesn't work, let me know).

Kris was one of the first people I "met" on CC.org and she and I were like twins.  We both went thru the same things at the same time.  Except she was 15-20 years younger than me.  Unfortunately, she passed away last year and I miss her terribly.  She was my "cancer buddy".

My doc is Mary Maluccio.  She works with your doc at IU Med.  I love her.  She has been nothing but straight forward, honest and a kick a$$ partner in this adventure.  I had a right lobectomy and they also took out my gallbaldder that day.  I have had no surgery since then and no chemo. That has long been a question for me, and I wonder if one day I will be sorry that I didn't do everything I could.

But, at almost 5 years out, I feel more confident everyday that maybe, just maybe, I have managed to be "cured"!!!

Keep on regimen, do everything you can to beat CC.  Sounds like you are doing a good job.  If you ever need anything from me, just email!  Hope to hear more from you soon!

Hugs,
Sue

Hello all!

My good friends and I are hosting a big bowling fundraiser for CC on April 14 in Indianapolis.  We hope to get 100 people or more to attend.  The way things are going, I don't think it will be a problem!!! We hope to donate over $3000 to CC.ORG!!!

If anyone would like to attend, email me and I will give you the particulars! If anyone has ANY kind of items that can be used for raffles or auctions, again, please email and let me know!  I will be ordering a bunch of bracelets and some tshirts and mugs when we get through Christmas.

Cross your fingers that it all works out EXACTLY like I plan!

Grover and Cindy, I expect you and your families to be there bowling!!!

Hugs to all,
Sue

Hi all!  It's do nice to hear my name bandied about on these boards!!!  I have been on here for almost five years, and have seen many people come and go ( I miss you Kris, my cancer buddy!!!).  But I truly feel that more are staying on our site, living longer and really giving CC the old "heave ho"!!!  I have had the pleasure of emailing with both Grover and his daughter and they seem like very special people.  Hoping that one day we will get to meet.  Cindy, you are lucky to have some good company on your chemo days!

It'll be 5 years on January 29, 2007.  That's when I had surgery so that's the date I use for being "cancer free"! I call it "being in remission", not being "cured", but who knows.  Maybe one day I will be brave enough to say CURED!!!

Hugs to all,
Sue

17

(13 replies, posted in Introductions!)

Suzanne,

I live just north of Indy and had my resection at IU Med.  My doc was Mary Mallucio.  She was fabulous and did surgery three weeks after I met her.  I was lucky, the tumor was only in one lobe of my liver, but she is very experienced in CC and I had complete faith in her.  I am 4 1/2 years out from surgery and still having clear scans.  I am sure all of the doc at IU Med are great, but I loved mine. I hope everything goes well for your dad.  I am so sorry you are all going thru this.  It is so terrifying.

People on this forum are wonderful. Please feel free to join in and ask all the questions that you can think of.

hugs,
Sue

Hello,

Your diagnosis sounds like mine, and I too had a resection with clean margins (and no chemo).  My doc also gave me 50/50 odds and I am now at 4 years, 5 months with no recurrence!!  So you see, it truly is possible to have no recurrence.  I know it can come back at any time, but my doc said the more years you go without one, the less likely it is to recur.  So, I am moving full steam ahead with my life.  It was very hard in the beginning, but you have a great start.  Good luck to you and please stay on this site.  People here are an amazing source of help.

hugs.
Sue

Marion,

The study is being run by 8-9 hospitals in the US.  My hospital is IU  Medical Center.  They are studying people with "drug induced liver injuries".  It is not run by the Augmentin people, Augmentin is only one of the drugs known to cause this reaction in people.  They asked me a lot of questions about where I have been and other meds I take.  They drew 10 vials of blood and took a urine sample.  They are compiling all the info from approx. 204 people (that's the number of people in the study since 2004, so you can see it's not a common occurrence) and continue to watch them thru the next few years.  I go back in 6 months to have my blood and urine tested again.  If all is well, I will merely go onto a "calling list" and they will only call once a year to check on phone numbers and addresses.  If my levels don't go down, they continue to follow you every 6 months. 

This injury has led to transplant and even death.  Once again, I had someone watching out for me from above.

Hugs to all,
Sue

Good morning everyone!

About three weeks ago I came down with a bad sinus infection.  I have had many of these over my life, so I knew exactly what was wrong.  I called the docs office hoping he would just send in a script for me for an anti-biotic.  He did, so I started taking Augmentin, an anti-biotic I have taken many times in my life! 

I took them over the weekend and by Monday I was feeling bad.  I was turning yellow, getting very itchy and was extremely tired.  I had some ongoing scripts for bloodwork so I decided I would go ahead and get that done. 

Well, that was Monday morning and they called me Monday evening to tell me that all of my liver enzymes were out of whack and I needed to go in for an abdominal ultrasound to make sure there were no blockages in my bile ducts.  I went for the test on the following day results were good.  No blockages or stones. 

But I was getting sicker, yellower, itchier and more and more exhausted.  Something was obviously wrong.  My doc referred me to a GI and I got in to see him a few days later.   He felt sure that the problem was something called a "drug induced liver injury (DILI)".  I had never heard of that.  He said it's fairly uncommon, but has been known to happen, specially with Augmentin. 

I was sent for an mrcp which also showed no stones or constrictions in my bile ducts, but it did leave one area in question.  They weren't sure what was going on so he wanted me to go for an endoscopic ultrasound. 

Of course, I had stopped the meds days ago, and I was finally starting to turn the corner.  I felt better, was less yellow and FINALLY the itching was slowing down. 

I had the EUS yesterday and they told me everything looks GREAT!  No questioning, no wondering.  Everything looks absolutely normal.  I am improving every day and feel pretty darn good.  It was a long tthree weeks.

I have been enrolled in an interesting study for drug induced liver injuries and will be monitored for a few years, but it looks like there has been no permanent damage.  Thank goodness!

I just wanted to warn you all about this drug and to be aware what meds your doc is ordering for you.  There is no reason to believe that my cholangiocarcinoma history made me any more susceptible to this kind of thing, but it is something to be aware of.  I should never have been prescribed this medicine.

So, three weeks and thousands of dollars later, I'm doing fine and will make a full recovery, but you all know how scary it can be when you unexpectedly turn yellow and start to feel bad.

Hugs to you all!
Sue

21

(10 replies, posted in Members' Cafe)

Pan,

I really feel your pain and am sending many many warm hugs and prayers.  My son is on his eighth tour over there, currently in Afghanistan.  He is with the Army Special Forces (Green Beret).  I worry about him every day. He has two purple hearts and really doesn't need anymore to add to his collection.

I will be praying for you, your son and his family to some home safe.  how long will he be gone this time? My son won't be home before February.

Take care,
Hugs,
Sue

Mark,

Thanks for your email.  I apologize for taking so long in getting back to you.  I had the right lobe of my liver and my gallbladder removed in January of 2007 (feel free to check out my early posts).  I remain cancer free so far.  Having a successful resection is the only true "cure", altho many people live with this cancer for many years.  It sounds like your dad is making all the correct decisions.  As far as chemo is concerned, I had none.  My doc felt there was nothing for the chemo to attack and suggested not doing it.  We will see how that decision affects my future.  I may regret that decision some day, but for today, all is well.  I am down to one CT scan each year and I do not worry about the cancer returning.  At least, not EVERY day.  Some days are still difficult.  All you can do is literally take it one day at a time.  I know that sounds trite, but it's true.  People in this forum are wonderful.  Please come here and ask any and all questions.

Hugs,
Sue

Good morning all!

Just checking in to let you all know that I had my 4 year CT scan last week and all looks well!  I do have a spot that the radiologist said needed "short term followup", but my internist says the the "high attenuating" lesion does NOT indicate a tumor.  It could just be a change on the surgical site.  I have no idea what that means, except for the words "that's not how a tumor looks".  My oncologist has never even called me, my sister in law was able to get the results in a couple days (she works for a different doctor), so at least I have the results.  Why are doctor's so slow to give people good (?) news????  I am assuming this is good news and am moving forward with it.  4 years!  I truly thought I would be long gone by now. 

As Maya Angelou said:  'I've learned that life sometimes gives you a second chance.'

Hugs to all!
Sue

Welcome, Fabyke!  I am four years post resection with clear margins and I had no chemo after surgery.  My doc simply said that there was nothing for the chemo to attack.  Let's hope it stays that way!!!  Congrats!

Sue

Jim, I too have two nodules in my lungs that they keep a sharp eye on, but they have not changed in a couple years and they feel they are the same that Lainy spoke of.  Try to relax and not worry until you know to worry.  (Yes, I know how hard that is!!!)

Good luck!
Sue