Topic: PA/NJ Cholangio Crew

Hi, all.
We met today for lunch. Eric, Chris, Mary, Renee and Karen were able to join me. We did a lot of talking... Introduced ourselves and discussed each others journeys so far. Then moved on to travel plans... I think Eric is planning on being away from home more than at home for a while! smile
It's great to hear of people making plans. Even though things are stable and my doc visits are only 2x a month, I still have problems making plans after all this time! I hope to change that soon.
We also talked to Marion by speaker phone. I even pulled up a photo from a couple of years ago so everyone could see what she looked like.
I hope that others can join us next time... Maybe early November?

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: PA/NJ Cholangio Crew

Hey, look! I'm a moderator!! (Gulp!!) thanks everyone! I will try to do my best.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: PA/NJ Cholangio Crew

Welcome and congrats Kris! You'll be fine!! smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: PA/NJ Cholangio Crew

Forgot to say as well, hope you all had a brilliant time! I'm sure that you all did! What a great idea having a meet up was and I hope that you will all be having another one as well! And great idea too having a speaker call too with Marion!! smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: PA/NJ Cholangio Crew

Congratulations, Miss Moderator!!! You will do a great job!!

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: PA/NJ Cholangio Crew

Oh and I just saw your pic on Facebook with the gang. I'm happy you could all meet and offer each other support in person. That is awesome you got to speak with Marion. She is always such a delight to talk to.

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: PA/NJ Cholangio Crew

Congratulations, Ms. Moderator, and for initiating this great get-together.  I will await some of your postings, compile, and sent for review to you.   We can then blog on Our Looseleaf Notebook
http://cholangiocarcinoma.org/wp/
I wish for the upcoming (possibly November) meeting to equally as fantastic.
Hugs and love to all you wonderful people,
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: PA/NJ Cholangio Crew

Hi Everyone,

I can't thank Kris enough for organizing today's get together!!!  For me personally, it was a challenge to attend due to some family situations this last week - my sister had surgery on Tuesday for rectal cancer, stage 1.  The doctor feels he got it all and she will just need to be observed but need to wait for the pathology report to confirm that.  My other sister's brother-in-law passed away from lung cancer Tuesday night.  He had been sick for awhile but it's still sad to lose someone you love.  I almost didn't go to the luncheon today because of all this but I'm so happy I did.

It was great to meet everyone and talk to others that are going through the same thing.  Thank you all for sharing your stories.

I look forward to our next get together!

Mary

Re: PA/NJ Cholangio Crew

CONGRATULATIONS, my Cookie, Kris. It's not that hard to be a Moderator all you have to do is love and care about others which you already do, so you are already there! I couldn't be more thrilled. Also thrilled about your luncheon today. Gee, wish I could have been there. I am just so excited, you celebrity you!

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: PA/NJ Cholangio Crew

What an absolute honor and privilege to meet such amazing cholangio warriors! The shared stories about discovery, protocols and getting on with the business of living was truly heartfelt.  Hats off to the foundation just for the opportunity of bringing us all together on this site.  Hopefully more people will plan get togethers for the purpose of sharing/meeting and maybe finding some answers.  Looking forward to the next time and updates from all.

Congratulations Kris on your new position!  And also for organizing and documenting the luncheon.

Prayers of healing to all.

Wishing all God's blessings!

Re: PA/NJ Cholangio Crew

What a blessing for you all to meet!  I would love that!  It is great to connect to people who are going through what you are going through.  Blessings to all of you!

Re: PA/NJ Cholangio Crew

After 6 months of dealing with cholangiocarcinoma, it was great (for the first time!) to see and meet others who are in the same boat. I walked away feeling a great sense of camaraderie. The message board is terrific, but nothing beats face-to-face conversations, especially about something so important. I'm so glad it worked out. Looking forward to seeing everyone again and hoping others will join.
Chris Lawler

Re: PA/NJ Cholangio Crew

Sounds like a lot of fun!  I am a little jealous smile
Welcome to moderator-land Kris!

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: PA/NJ Cholangio Crew

Thanks!
I guess 5 hours is a bit far to drive... Maybe one day we can do a NYC meet! Lets see how next spring looks. Maybe some of the "locals" will want to go. We could do a day of it! Or at least lunch and.......
I will be in NYC on the 21st with a friend while she has a procedure done at my old stomping grounds. I'm thinking while she's under, I might visit the 16th floor of Sloan Kettering.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: PA/NJ Cholangio Crew

I would love a NYC meet!!!  And getting to meet Randi would be the highlight of the trip!!!  She is such an inspiration for me!!!

Mary

Re: PA/NJ Cholangio Crew

Kris,
Congrats Miss Moderator. I loved seeing the picture of your gathering.  I love this group and can't wait to meet more of our CC family. Maybe next time I can make the drive.
Great job
Lisa

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: PA/NJ Cholangio Crew

Kris, congrats on the new title!  You deserve it.

xoxo Renée

Re: PA/NJ Cholangio Crew

Ok, so I decided we are the PA/NJ Connection. No cc involved in the title. It doesn't deserve it anyway!!

There will be an article about the first meeting in the loose leaf notebook.

I would like to start hearing schedules, as you know them, for the next meeting... Hopefully in November before it gets too cold and everyone gets too busy with the holidays. I'm thinking New Hope again, or Peddlers Village where there are bound to be some decorations, either holiday or scarecrows, around.

Any ideas on another area? Please let me know.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: PA/NJ Cholangio Crew

Hi Kris,

Fridays in November are not good for me and the Wednesday before thanksgiving is not good for me.  Any other day in November works for me as long as nothing is added to my chemo schedule.

I would like to try a new place so Peddlers Village would be my vote.  As you said, the decorations should be up and they always do a beautiful job with that!  This way, for those of us who have the time, maybe we could walk around after lunch and enjoy the sights and do some shopping.

Thanks for organizing this again.  I'm really looking forward to seeing everyone!

Love,
Mary

Re: PA/NJ Cholangio Crew

I like the new name with "connection" in the title. The location works for me too.

On Sept 30, I am starting on a 6 week plan of radiation and oral Capecitabine (Xeloda) 5 days per week. If all goes as planned, it should end by the second full week of November.

It's hard to accommodate everyone, so if I can't make it to the November meeting, I'll try for the next one.

Hope everyone is doing well.
Chris

Re: PA/NJ Cholangio Crew

Chris, sending out prayers for good results! You handled the first cocktail like a pro, so I sure hope you feel as good on the new treatment.
Ok, let's try November 18, 19, 20, 21.
I'll go with majority vote.
Please get back to me late October with your choices!
And I like Peddlers Village, too.

This is gonna happen again! I hope a couple of the others can attend the next time.

Email kris00j@gmail.com

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: PA/NJ Cholangio Crew

Great job organizing all this, Kris!!

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: PA/NJ Cholangio Crew

Hi Chris, best of luck and good wishes on your new upcoming treatment. It's always nervous time until one actually gets started. Sending you a ton of good luck and please let us know how you progress!

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: PA/NJ Cholangio Crew

Chris will send positive, healing energies your way as you start this new protocol.  If you are in need of transportation through this, at any time, please let me know as I go through Cherry Hill regularly. (you can email me privately)

Kris any of those date work for me and Peddlers Village is perfect.  However, I want to throw out to the group...if you would feel more confortable with just patients attending I totally understand and would honor that decision.

Prayers of healing to all.............

Wishing all God's blessings!

Re: PA/NJ Cholangio Crew

Karen, you are more than welcome! You have a lot of experience with cc, and you can share the "other" point if view, especially when we say things like feeling guilty for putting our families thru this.
Besides, you already joined the group and I don't allow quitters! big_smile

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.