Topic: This week 4 years ago...

Hard for me to believe, but it was this week 4 years ago when my journey with cholangiocarcinoma began with itching, dark urine, and light stools.  I saw the nurse practitioner at my internists office thinking that I was having an allergic reaction.  When she heard my symptoms she ordered a CAT scan and blood work immediately.  I asked her what she thought it was and she said hepatitis.  When I heard that, I called my husband on the phone and started to cry.  Little did I know that I would have welcomed hepatitis!

After that, things happened fast and I went to a GI doctor for an ERCP which caused pancreatitis and a 6-day stay in the hospital and a diagnosis of Extrahepatic CC and a consult with a surgical team.  My Whipple was scheduled for 12/15 to give me time to get my strength back before surgery.

Surgery was 6 hours, a 6 day hospital stay. My ECC was staged at IIb, no lymph node involvement, clean margins, just small pancreatic involvement which was removed with surgery.  Chemo followed beginning in January ending in July. 

A few scares along the way, some which led to some unnecessary tests (liver biopsy for one), and here I am, 4 years later.  My August scan was good so I don't have to return for a scan until next August (2014).  Up until that scan, I had been scanned every 3 months.

I am sorry for the long post, but I wanted to just remind myself of the path I have taken.  While I certainly didn't want to cancer (again!), I have found so many good things that have come with my journey.  One of them is this site and the people on it. 

I only wish with all of my heart that every one here could post a 4 year survival (or 5 or 6 or 7...or 20). 

I pray for a cure for this disease and treatments that work and have few side effects and early detection.

My best wishes for everyone on here.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: This week 4 years ago...

Randi you have had quite the journey.  How blessed you are to be able to recount the events.  And a year between scans...how positively wonderful.
In peace,
Karen

Wishing all God's blessings!

Re: This week 4 years ago...

Cheers to you, sweet Randi. I am so happy everything is going well for you. You are awesome!! Thanks for always cheering me up by telling me funny stories on FB.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: This week 4 years ago...

Best wishes for continued success on your journey. 4 years is incredible in itself. My hope is you will continue to blaze the trail for others who you've already helped yet never met.

Carl

Re: This week 4 years ago...

Randi - Not glad that you have had the journey but glad that you are where you are at now. I am hoping we will be at that point someday too. Congrats! And here's to many more.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: This week 4 years ago...

Hey, Randi Girl, Mazel, Mazel! You have had several Journeys and it just goes to show what a winning and positive attitude can do. The Cancers came and when they saw it was no use fighting you.....disappeared. You give hope to all others facing this battle. And with all that you are so darn cute!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: This week 4 years ago...

Hi Randi, So happy for you!  It's great to hear you are doing well.  I wish you many days of good health.

Re: This week 4 years ago...

Hi Randi,

It was nice to hear you recount your journey and give us all hope!  I am going through a difficult time right now and it's nice to hear positive stories.  It lifts my spirit!!!

I've been having some issues so they moved my CT scan up from December to last week and it was not good news.  All my tumors have grown significantly and there are two new ones - one in my abdomen and one in my liver.  The new ones are small.  I was on Paclitaxel but they stopped it since it wasn't working.  Unfortunately, it seems the five SBRT treatments I received in May didn't help at all either.  I am now on gemcitabine and cisplatin - started on Friday, 11/8.  I've had gem before but not in combo with cisplatin so I'm hoping the combo will help shrink the tumors.  There's a lot of other stuff going on but my onc says she is not giving up on me and has another treatment if this doesn't work.  All in all I'm doing ok and don't look as sick as they say I am.  My main issue right now is constipation which I've been dealing with for about a month.  Seemed to have gotten it under control but then after the gem and cisplatin on Friday it started up again.  I'm taking milk of magnesia and Colace and did have some relief today so maybe it's starting to work.

Sorry for going on but your post really did lift my spirits and I have hope I can get through this difficult time and get to enjoy some more time with family friends.  Thanks for your uplifting spirit!

Peace,
Mary

Re: This week 4 years ago...

So glad I helped lift your spirits Mary. 

I too dealt with constipation during chemo, so much so that I ended up with a bowel obstruction that hospitalized me for 5 days after cycle 4.

What worked for me after that was taking 2 senna and 2 stool softeners in the morning, drinking a glass of water with miralax during the day, and taking 2 senna and 2 stool softeners at night.  It really worked well for me. 

I hope you find the combination that helps keep you going smile  and good luck with the new chemo.  I like that your doctor says there is more she has up her sleeve for you!

Take care.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: This week 4 years ago...

Dear Sweet Mary, I am sorry to hear this but loved that the ONC has some more tricks up her sleeve. I think one can always handle things better when other problems are not present.  You never know how strong you are until "strong" is the only choice you have! Love you Mary, hand in hang on!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: This week 4 years ago...

Thank you for "posting" the long walk. I do appropriate hearing the full walk on your road. It helps to give me hope with my husband and to know we are not alone. Happy Holidays