1

(122 replies, posted in General Discussion)

Pam,
I haven't been on the board for a while.  I wish the best for Lauren.  You're a magnificent mother.  We know that.  She knows that. 

Wishing blessings to you and Lauren.
Diane

2

(15 replies, posted in Grief Management)

I had my husband's wedding ring made into a pendant which I wear always on a  chain around my neck.  He passed in 2008 from cholangiocarcinoma. 
Love, Diane

My dearest Percy,
Please accept my deepest sympathy on the passing of your dear Helen.
Sincerely,
Diane C.

Dear Lorraine -- I live in the Northwest (Redmond).  You are in good hands with SCCA.  One of the best comprehensive cancer centers around.  I'm sorry you are having to go through this ordeal.
Diane

5

(39 replies, posted in Members' Cafe)

Julia - your screen name background is very sweet.  I thought it had a Spanish flair, but I was way off base.

6

(39 replies, posted in Members' Cafe)

Well. . .doh!!!  Nothing to explain with DianeC.

7

(14 replies, posted in Introductions!)

Dear Laura Gail -- our hearts are with you. 
xoxo
Diane

The following link details liver transplantation covered/not covered by Medicare.
I googled "Medicare Cholangiocarcinoma transplant".

In 2006 my husband, who was 69, was considered a candidate for liver transplant due to cholangiocarcinoma.  (Mayo Clinic, Rochester)  Unfortunately his cancer had metastasized and he was therefore excluded from transplant.

However, while he was being considered, Mayo was very clear that Medicare would NOT cover transplant for his CC.   We would personally need to put $100,000 up front.

Hope this helps clear up some questions.
Diane






http://www.cigna.com/assets/docs/health … _donor.pdf

I've moved this post to "General" in order not to interrupt an ongoing thread.

The following link details liver transplantation covered/not covered by Medicare.
I googled "Medicare Cholangiocarcinoma transplant".

In 2006 my husband, who was 69, was considered a candidate for liver transplant due to cholangiocarcinoma.  (Mayo Clinic, Rochester)  Unfortunately his cancer had metastasized and he was therefore excluded from transplant.

However, while he was being considered, Mayo was very clear that Medicare would NOT cover transplant for his CC.   We would personally need to put $100,000 up front.

Hope this helps clear up some questions.
Diane

http://www.cigna.com/assets/docs/health … _donor.pdf

Dearest Byron -- your wife is a gem.  She knows what's best for her precious husband.  Go and enjoy yourself.   Please keep us posted on all the details of this upcoming spring vacation. 
xoxo
Diane

11

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

Kris - Such great news.  Tumor shrinking is just wonderful.  Am anxious for your updates.
xoxo
Diane

12

(27 replies, posted in General Discussion)

I'm praying this very minute, Pam.  And I will continue.
xoxo
Diane

13

(35 replies, posted in Introductions!)

Hi Janet - glad you've made your way to us.  This is an outstanding group.

In 2006 we were in the hopes that my husband Brad would be a candidate for a liver transplant at Mayo.  He was under the care of Dr. Gores.   One of the first visits we received was from the financial dept. at Mayo, who informed us that we were responsible for the cost of transplant.  My husband had Medicare and Aetna insurance.   They would not pay as the transplant for CC was considered experimental.  Things may have changed since then, so it may be best if you contact Mayo.  They will have the complete information. 

Unfortunately, Brad's CC had metastasized to the lymph nodes, which excluded him from transplant.

I'm thinking of you and your husband, Janet.
xoxo
Diane

14

(25 replies, posted in General Discussion)

Dear Byron - Agree completely with Marion's comment that not everyone responds to a particular chemo. 

You're one tough (and sensitive  smile ) guy.  I'm rooting for you!
xoxo
Diane

15

(35 replies, posted in Introductions!)

Dear Janine -- I wish I'd read your personal blog before I responded to your post.  It's clear you know what you're up against and how to proceed.   Sounds like you have a great team supporting you.

There will be more forum members checking in here soon.
xoxo
Diane

16

(35 replies, posted in Introductions!)

Welcome, Janine.  You'll find a friendly, welcoming, and knowledgeable family here.

Will your oncologist or primary contact your insurance company for an off-label approval?    My husband had a similar dilemma, and ultimately insurance ok'd the off-label use of a particular drug. 

I'm wishing only the best for you,
Diane

Dearest Kathy, words cannot express how I feel about the loss of your sweet and precious father.

You were an extraordinary daughter.  Why wouldn't you be?  You had an extraordinary dad who loved you and taught you well. 

My sympathy, Kathy.
Love, Diane

18

(134 replies, posted in General Discussion)

Dear Tom -- you're the best.  It's not easy being a caregiver.   You and Ben are fortunate to have each other.

Please let us know what the docs say today.
xoxo
Diane
(P.S. I love Ft. Lauderdale)

19

(48 replies, posted in Introductions!)

Eli, you really made me laugh about the docs comments.

I'm happy about the good news.  Not so happy about the hernias.  You must both be on Cloud 9 today.  Keep the good news comin'.
xoxo
Diane

Welcome to Glenys and Jilly -- we're a friendly bunch here.  You'll find a wealth of information.  And a ton of support.

Diane

21

(7 replies, posted in Grief Management)

Dearest Jenny,
I'm glad you feel comfortable coming here to express your feelings.  We're here for you - always.

5 months...that's just a grain of sand on the shore.  There is so much going on in your life that you wished to share with Jeff.  His presence is in your heart, soul, and mind. 

Jeff will be with you at your daughter's graduation.  How proud he would be of her, and of you and your family.

Jenny, be gentle with yourself.  You don't sound like you're being crazy.  You sound like someone who loved her husband to the nth degree.  There is no timeframe on grief. 
Love, Diane

"The pain I feel now is the happiness I had before.  That's the deal."  C. S. Lewis

Dear Joann -- You and David were blessed with such love.    Without that undying love, your grief would not be so profound.  And that is the irony of this heartrending tragedy. 

My heart aches for you, Joann.
Love, Diane

Eli, you present an interesting question.  This is a cancer for which there is  scant information.

My husband Brad died in 2008 as the end result of CC.  He was diagnosed with ulcerative colitis (UC) in the 1970s.  He had his colon removed in 1982.   In  2004 he was diagnosed with PSC (primary sclerosing cholangitis) and in 2005/2006 with CC. 

As Brad recalled, his mother probably had UC.  In "those days" UC was considered a stress disorder.  Clearly not so.

As far as Brad's CC, UC does not cause cholangiocarcinoma, but many CC patients have suffered with UC.  Brad's CC may have been simmering for at least 30+ years.

24

(12 replies, posted in General Discussion)

Dear BB,
What a devoted and loving husband you were to your precious Susan.
My sincere sympathy to you and your sweet daughter.
Love, Diane

Ya know, Lainy.  Perhaps I need therapy.  I think I have some leftover childhood blankie anxiety.  Blankies are our friends  big_smile