1

(87 replies, posted in Introductions!)

Congratulations Matt- that's wonderful news.

Best wishes,

January

2

(6 replies, posted in General Discussion)

Dear Jess,

I'm not sure how I've missed your postings in the past, but my daughter was diagnosed in January 2013 when she was 29 years old.  She had a resection and chemo at Sloan.  Her oncologist is Dr. Eileen O'Reilly and I cannot recommend her more highly.  She is not only brilliant but caring and kind beyond all description.

I see you live in Philadelphia.  A few weeks ago we worked at a golf tournament to raise money for a foundation contributing to cholangiocarcinoma research at Johns Hopkins.  A doctor came who is conducting a clinical trial for recurrent liver tumors.  His name is Daniel Cosgrove and he is at the Sidney Kimmel Cancer Center. He was very impressive and committed to finding answers.

My thoughts are with you, your husband and family.

January

3

(87 replies, posted in Introductions!)

Matt- have you tried Zenpep?  It's a life saver for my daughter.

January

Best possible words!

5

(87 replies, posted in Introductions!)

Dear Matt,

What wonderful news! Enjoy!

January

Dear Porter,

Wonderful, wonderful news.  Enjoy!

Love,

January

You made my day!

January

Dear Lainey,

WONDERFUL!

Best wishes, January

9

(87 replies, posted in Introductions!)

So happy that surgery was an option for you and it certainly sounds like a resounding success.

Best wishes for your recovery,

January

I think its absolutely necessary to have a doctor who makes you comfortable.

So glad that's the case for you now and that you are doing well.

Best,

January

11

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

Congratulations-  wonderful news.

Best,

January

Wonderful news-  my very best wishes for your continued good health.


January

Dear Nikki

Great news!  These are the days to savor.

Best,

January

When my daughter was diagnosed at 29 years old, one of her doctors at Sloan said, "no one wants cancer, but if you are going to get it you want one of the big 4.  We have a lot more information and research on those."  I know hearing that, we all thought if she had to get cancer, we wished it had been one of the big four.

It goes without saying that of course no one would want cancer- but if so stricken, I think it only natural to want the best prognosis, the most research dollars, and the biggest events in Central Park!

Before this all began, none of us had heard of cholangiocarcinoma but I've written more checks to Susan G. Komen over the years than I can count.  An interesting fact is my computer doesn't recognize cholangiocarcinoma and is questioning if I've spelled it correctly.

That being said, I've known literally dozens of women with breast cancer over the last 20 years virtually all with early detection and positive outcomes until this year.  Our dear friend Tricia passed away in August at 36 years old leaving a beautiful 4 year old son, a beloved husband and devoted parents.This was, and continues to  be, heartbreaking beyond all description.  She had been told that she had an 85 percent chance of surviving 5 years and her comment to us near the end was, "well I guess I'm in the 15 percent." 

We tell our daughter that she is a person not a statistic and no one knows which side of the "percentage" roulette she will land in.  We say our prayers for both Lauren and Tricia.

Dear Willow-

I used the deduction method as well!  Caring Bridge for Porter Fox.  A very happy site!

January

Dear Porter,

I've been following your progress on Caringbridge.  I couldn't be happier for you and your family.  I wish you a speedy recovery.

Best,

January

Dear Porter,

I've been thinking of you and looking forward to good news.

Best,

January

Patty-  wonderful news.  Congratulations!

January

19

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

Thank you all!

January

Dear Danielle,

So sorry for all you've been through.  We live on Long Island as well, and my daughter (age 29) received a second opinion, and ultimately surgery and chemo at Memorial Sloan Kettering.  I have heard wonderful things about the entire surgical team in pancrobiliary at Sloan.  Her surgeon was Dr. Peter Kingham  and her oncologist is Dr. Eileen O'Reilly. There are not enough words to praise these people and our experience at Sloan in general.

Good luck to your father and your entire family,

January

21

(8 replies, posted in General Discussion)

Dear Lainy,

I have heard about the suspicions about fish- and yes, Lauren loves sushi and has for years.  Everything is feeling kind of suspicious to me about know.

Thanks for your thoughts,

January

22

(8 replies, posted in General Discussion)

Dear Pam,

That is interesting-  we mentioned the article to Lauren's oncologist yesterday and she said she is aware of the research.  I remember she needed to have monthly liver function tests while on the medication.  I wonder.

January

23

(8 replies, posted in General Discussion)

I am wondering if anyone knows or has heard of a connection between cholangiocarcinoma and Tegretol use.  My daughter was diagnosed last year with CC at 29 years old and when she was 9 she had a seizure disorder which was treated until she turned 14 with the anti-seizure medication Tegretol.
Since this all began, she has been searching for the answer to "why" as she realized that this is both a rare cancer and one that is unusual in young people.  She came across an article which hypothesized a connection between Tegretol and the development of CC.  Is anyone familiar with this?

Thanks,

January

24

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

Dear All,

Thanks so much for the good wishes and prayers.  We were at Sloan for Lauren's scan and blood results yesterday and met with her oncologist, Dr. Eileen O'Reilly.  We were thrilled to hear that both were clean and we have reached the milestone of one year post resection/whipple.  Lauren turned 30 and it was a very happy birthday.

Again, thank you so much for everyone who was so reassuring that the anxiety was to be expected, and the results, when normal, so joyful.

Gratefully,

January

Dear Mary,

My daughter was on Gem/Cis for 4 months.  She definitely had side effects and symptoms for about 4 days following treatment, but felt much better on the off week.  She traveled several times during those weeks and each was a welcome break.

I hope you can all enjoy your trip,

January