Topic: Introducin myself...

My name is JIm Haury and this summer I was diagnosed with intrahepatic cholangiocarcinoma. A single liver mass thought to be colon cancer metastasis turned out to be this unusual biliary tract cancer. Consequently the liver resection was not performed on the mass and my case went before a cancer tumor review board. Tests indicated in the pathology report suggested the current diagnosis. I have had 2 chemo embolizations since and must say they work well on me. Doxyrubicin was used the first time and cis-platin was used the second time due to the unavailability of the doxy. Recently a small mass was seen on one of my lungs. I started a regiment of systemic chemo again to stabilize the lung mass while it is small. My liver appears stable but that could change and have considered embolizations again sometime after the holiday.

I live in the Seattle area and wonder, since it is such a rare form of cancer, who are the others that have this unique condition. I would like to meet them if possible. Thank you for letting me ramble...nice to virtually meet you all.

Re: Introducin myself...

Oh, I would be interested in handing my oncologist a few of your brochures. I help their social group out sometimes.
Jim HAury
13812 8th Ave S
Burien, Wa. 98168

Re: Introducin myself...

Hello and Welcome, Jim....there are others in the Seattle area....Jean, DianeC, Lisa, and Wendy.  You might want to use the "Search Function" and simply enter "Seattle" where you will find postings about Seattle and members living in the area.  You might also want to use the same functon for other key words such as "lung metastasis" or whatever you might want to read up on. 
Thank you so very much for wanting to hand out some brochures.  You might want to email Stacie@cholangiocarcinoma.org and she will gladly mail some to you.
Again, so sorry for the circumstances leading you here but so happy for you to have found us.
Sending tons of good wishes your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Introducin myself...

Hi Jim,

Welcome to the site. You will be glad you have found it.  Although this is a rare form of cancer, the information & support you will get here is the best! Unfortunately, it seems to treat everyone differently, but with all the experience & knowledge of the people here, someone will always be able to help you out, answer your questions or at least steer you in the right direction.  I too am sorry for the situation that has led you here, but know that you can come here any time for all the help & support you need. Good luck to you on your CC journey.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Introducin myself...

Hi Jim,
I think it would be great if we cc patients and our caregivers could get together for dinner sometime!  I'm about an hour away from Seattle.

BTW - welcome to the site.  You will find a lot of information and caring and heroic people here.

Re: Introducin myself...

Thank you all for the quick replies. I woke up this morning to phone payment problems and the web is my only outlet today. But that's ok. I was approved for Social Security Friday. I am playing guitar today and don't need it. By this time next week will have this taken care of. Then I would like to look into helping out in some way. I have passed information from your medical updates to my oncologist. The choice to use a certain ingredient in my chemo cocktail was a result of that. Lisa I like you idea for a dinner. I spend a lot of time in Mukilteo so that puts us closer at times. I think.

Getting old is tough and this makes us even tougher. My prayers are with all of you and your success in beating this condition. Thank you for allowing me to become a member of your group.
Jim Haury

Re: Introducin myself...

Jim,
Did you have to jump through any hoops to be approved for social security?  I'm planning on working another year before I apply.  However, if it looks like I'm going to be laid off from my job, I'm going to go on disbility then apply for social security.  Hopefully that won't happen before next fall, and hopefully the economy will be better by then!  And God willing, I will still be healthy enough to continue working. 

Sorry for the rambling!

Re: Introducin myself...

Hi Jim,
A big welcome and sorry you had to come, but we are a great group. I am  glad to here that chemo embolisations gave it to the cc. I dont know enough about it, so sorry for the basic question. Why and how long do you have to wait for the next embolisation?

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Introducin myself...

Hi Jim,
Welcome to this site.  I was diagnosed in July of this year.  I'm 43 years old and have no risk factors that would have lined me up in the crosshairs of this disease.  My oncologist recommended systemic chemo in the event the cancer metastasized from somewhere else, but they can't find where in my body it might/could have come from. 
I have no jaundice and had failed liver resection surgery.   My entire left lobe is one big tumor with a 1 cm tumor on my right lobe, which caused the failed liver resection.
I am currently on chemo drugs gemzar and cisplatin.  Very few side effects, other than fatigue for the first couple of days after, with some drops in white blood cell count and red blood cell count.  But I have been given drugs to boos both. Hopefully this gemzar/cisplatin combo will do the trick to shrink my tumors enough for another attempt at resection.

I have found a lot of good information on this site, and I'm sure you will too.  Hang in there.

- Suzanne

Re: Introducin myself...

Hi Jim

As everyone has said, welcome to this forum.  I think you'll find it very helpful...it seems there's always someone who has gone through or is going through the same things as you.  And a more supportive group of people you'll never find!

I live in north Seattle and grew up in Everett, actually near Mukilteo.  Where are you being treated and which doctors?  I also was diagnosed with a single hepatic lesion pretty recently, in April of this year, and had surgery in May at Swedish by Dr. Michael Hart.  Dr. Philip Gold is my medical oncologist...though I've actually only met with him once.  Neither recommended any additional treatment after the surgery so I'll just be followed up with regular scans.

It sounds as if you had very good results from the chemo embolizations...that's very good to hear.  Hopefully the chemo will work well for the small mass that was found in your lung...which drugs are you taking? 

Keep in touch and let us know how you're doing...wishing you all the best!

Jean

Lisa...I always think of you on Friday nights when I get off I-5 at the Smokey Point exit to go to a dog training class (two German Shepherds!).  Hope all is going well and you're finally feeling better...very sorry to hear about the possible job lay off.  I know you're a strong person and you'll find a way to make things work out...prayers going your way!  Jean

Re: Introducin myself...

I am not real sure how to use the discussion board format to reply to you individually yet. Thanks for the email support. It makes me feel special and accepted. Social Security was not too difficult. I applied and in less than 4 months I was approved. I have a whole set of Doctors from a primary care physician at the Seattle Indian Health Clinic to a nuclear medicine doctor at Virginia Mason Hospital. Tumor growth rate plays an important role in determining frequency of embolisms. And keep in mind there are 2 lobes done one at a time and about 3 weeks time separate procedures. My oncologist and my systemic infusions are done at Pacific Medical downtown. I also have a urologist and a gastro team at PacMed. This all began as a serious stomach ache about 4-5 years ago and a bottle of zantac and 14 days made me able to work again. Then later they found a benign tumor in my groin and then colon cancer in my sigmoid colon and a mass on my liver first thought to be colon metastasis. Now claims to be cc. I have a background in chemistry and on my first day of chemo I drew the molecular diagram of oxalyplatin. It's a long story.....I get personally involved with my medical care. So far, I have survived everything thrown at me and I intend to keep doing the same here. Since I am retired now I will have more time to play guitar and pay it forward. Holidays are coming!
Happy Halloween
Enjoy the fall colors: from a window or a car if you are able...
Jim Haury

12

Re: Introducin myself...

Dear Jim -- welcome.  There is an extraordinary amount of information on this site.  And a group of warm, welcoming, and knowledgeable people.

I live on Whidbey Island, so I'm just minutes from Mukilteo (and Seattle).  If a local gathering takes place, I'd like to be there.

I was the caregiver for my husband Brad.  He unfortunately passed away this past August.  Brad began his journey with ulcerative colitis and had j-pouch surgery in 1982.  In 2005 he was diagnosed with PSC (primary sclerosing cholangitis) and then CC in 2006.  His last chemo protocol included oxaliplatin and gemcitabine.  Brad was treated at Virginia Mason by Dr. Vincent Picozzi. 

Your personal involvement in your treatment is important, and you obviously have an excellent team of doctors working for you. 

Glad you found this site.
Diane

Re: Introducin myself...

Hi Jim, Love your attitude.  It's about the only way to fight this disease , is to stay positive and deal with it as it 's thrown at you.  Instead of chemobolization, I've had 3-D conformal External radiation to my liver and that seems to have keeping the liver stable.  Have to deal with spinal nerves now. MRI tomorrow.   I have some friends who live close to Farchild AFB.  Is tah anywhere near you guys in Seattle?  Hope you find this sight informative, friendly, and supportive.  I know I have without a doubt.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Introducin myself...

Seattle area folks - check out the thread on "General Discussion" about getting together for dinner in November!

Re: Introducin myself...

Jeff,
Good Luck and wishes for a positive MRI report. I'll say an extra prayer for you too. Fairchild AFB is on the other side of the state. I have already found insight and support here. Thanks for being there and being so strong.
Jim Haury