Topic: Introduction

Greetings:

Yesterday I checked the Web Free Dictionary for the spelling of cholangiocarcinoma, and saw this marvelous site listed -- as well as the correct spelling of the word.

Here's my history with CC. 

In March 2001, when I was 67, it was accidentally discovered that I had CC and could expect to be around for only a year or so, although I could be lucky and last longer.  Unfortunately I told the doctor we'd have to go for the longer option -- a year wasn't enough.  Why?  Well after retiring as a librarian for about 36 years, I began my retirement project -- to restore a 1937 Studebaker I had for many years.  In the previous fall and early spring of 2001, I had taken parts of the car to the body shop, but the rest were all over the house, in the garage, basement, back porch, maybe some under the bed, and most small parts in 257 jiffy bags (identified on used library catalog cards, of course).  I knew I'd need more than a year to complete the restoration, and, certainly, my wife could not get the car back together!

In May 2001 they took out the left side of the liver which contained about a 10.5 cm mass--but with clean edges and no evidence of cancer in a nearby lymph node.

After a couple months recovery, I began work on the car and all went well until Apr 2002 when the growth metastized to  the right side of the liver.

I then began a clinical trial of OSI 774 (now Tarciva) at the Univ. of Wis. Comprehensive Cancer Center--Madison in May 2002.  Within two months some spots had disappeared and others were contained.  Since that was a targeted drug I was able to continue working on the car until it was complete in June.  Side effects were minimal -- upper body rash, some diarrhea, and (of all things) shallow but numerous and painful in-grown toe nails!

The OSI 774 stopped working in Nov. 2003 after which I had successful surgical chryoblation of some of the spots.  In Feb. 2004 I went on a clinical trial of Gemcitabine & Epothilon B -- which did not work.  In May, 2004, I began a trial of Oxaliplatin & Capacitabine.  Amazingly, that worked until Oct. 2005 although the side effects were a challenge to deal with.  That trial was stopped in Oct. because the spots were almost indistinguishable, but also because my plateletes took too long to recover between treatments (7 weeks at the end).

In Feb. 2006 the spots returned and I went back on Oxaliplatin/Capacitabine "off study".  It was then I found out about the compassionate nature of Medicare.  Medicare said they would not cover the drug--which was only approved for colon cancer, not my CC, which they could hardly even find in their list.  Medicare said they "would not approve it, I could appeal, but it wouldn't do any good.  Did I have any other questions.  No, well, have a nice day."  I figured I had a illness which was "illegal" in the U. S.  My options were:  pay about $200,000 if I were treated for a year, or convince the insurance to pay, or work with the drug company for a better deal.  Fortunately, the insurance did pay.  Unfortunately the drugs no longer worked.

In July 2006 I began a trial on Panzem -- which didn't work. 

This month I had SIR Spheres (radioactive beads) inserted in the liver through a cather.  My next CT scan will be in December.  (Of course Medicare wouldn't pay for that either -- not approved for me -- although the secondary insurance came through again!)

I hesitate to mention physicians by name other than to say the UW-Madison Compreshensive Cancer Center is tremendous.  Also, my initial oncologist is now at Ohio State, so those in Columbus, Ohio, could expect marvelous treatment there.  Fortunately the Wisconsin Dean HMO Insurance has been very helpful and supportive.

Another other sort of minor thing.  Since I have CT Scans every two months, and never liked them, I've now learned how to deal with them.  1)  I'm able to drink the barium contrast (either the night before or in the morning, depending on the extent of the scan) by drinking it.  I sit in my Lazy-Boy, pretend the barium crap is a cocktail and just sip it while reading a book.  2)  The lab technicians have always had trouble inserting the larger needle in my arm for the dye at the time of the scan.  My veins would roll and they'd have trouble "chasing them down".  So I began putting Emla cream (lidocaine/prilocaine) on the injection spot about 2 hours ahead of time and now feel absolutely nothing when they insert the needle. 

A final note:  over 1 1/2 years ago nearly 1/2 hours worth of chemo (quarter of the bag) was infused in my arm (not the vein) by mistake.  That caused pretty substantial pain for a number of months, lots of scar tissue formed on the fore arm, but I still have full use of the arm.  If anyone else has had this unlucky experience I'd be glad exchange thoughts with them.

Oh yes, I'm sure you're wondering about the "life-saving project" -- my car restoration.  Well, for the first show, I took it to the International Studebaker meet at South Bend in 2002 and received 394 points out of 400 total -- after which my son and I bravely drove the car through Chicago in 95 degree heat & heavy traffic back home to Platteville.   And, since you ask, I do have photos of the restoration at:  http://www.pbase.com/redtop/studerestoration

I keep very busy with cars, local history research, genealogy (I now have over 9,000 entries on the Web), photography (over 4,000 Web photos), and try to keep up with the grandkids in spite of my bad feet (that problem started in 1987)

Sorry this "Introduction" turned into a saga of sorts.  But I hope my extensive experience with CC may be of help to others.

Jerry

Re: Introduction

Hello Jerry,
    I'm glad you found this site and are still here to tell us about your experiences. It sounds like you have been through a lot . I hope you are able to start another project and spend the next five years working on it. You have a wonderful attitude and I think that is half the battle. Stay strong and positive. My prayers are with you. My husband is presently being treated at OSU Medical Center in Columbus. Could you tell me the name of the oncologist you had that went there? It may be the same one treating him although he has mainly been under the care of Surgical and Radiation Oncology. He has received very little chemo yet. They are hoping to make another attempt at resection. Thank-you for the info and take care. All of you suffering ftom this disease are so brave and strong, it is very inspiring.  Mary

Re: Introduction

Thanks Mary for the good words.  Keeping busy on other things is a large part of it.  Of course those other things can be pretty stressful -- but I figure that is positive stress which seems to work well for me.

I'll e-mail you separately about the great doctor at OSU whom Wisconsin allowed to escape our state.   Jerry

Re: Introduction

Jerry You're great !!!
Your Studebaker is beautyful !!! If I lived in the U.S I would ask you for an autograph ...:) All my family , here in Poland , was struck down becouse of its class and beauty - it's a pitty you could't drive me  in my wedding day !!!!!! 
I'can imagine that beneath your ironic style there is a lot of unpleasant experiences , but I personally admire such a people , and I want to wish you a lot of strenght , and next car in many  parts around the house !!!!!
Anna
Special greetings from my fother-in-low ( cc since May 2005 ) - he has got similar way with live smile

Re: Introduction

Anna,  Thanks for the very kind compliments on my Studebaker.  That was the project that kept me going during the initial stages of this normally very aggressive cancer.  But, I was able to keep the illness out of my mind as I concentrated in getting the car back together.  Also, do you think being exposed to lacquer thinner and paint fumes so much of the time helped discourage the cancer!

I'd love to have driven you in the car for your wedding, but getting it to Poland would be a bit of a challenge.  Actually I drove 3 of our kids to their weddings in the car, but our last daugher got married a couple years ago in Scotland, and because of all the water between here and there, it was hard to float the car across!

I'll tell my wife your wish to have more car parts all over the house.  That sounds like a good plan to me, though.

I hope your father-in-law has good success with his cancer.  It sounds like his attitude will help him get through the tough days.