1

(31 replies, posted in General Discussion)

Hi Robert,
Sorry you had to find your way to this site, but you will find lots of support and great information here.  You will get multiple comments, but here are some basics for a newcomer.
1.    If you are ultimately diagnosed with cc understand that it is a rare disease and many oncologists have little to no experience treating patients with cc. You are strongly encouraged to find an ONC who has experience treating patients with cc.  This website has resource to help you find an ONC with cc experience.
2.    Second opinions are strongly encouraged.  Because of how rare this disease is and the lack of experience in treating cc, a second opinion is encouraged.  While you may or may not be in an area with a Dr. who has significant cc experience, most of these Dr.

2

(4 replies, posted in General Discussion)

News of Steve Jobs passing has been met with a wide variety of responses/comments across the globe. Praise for the creative genius that spawned so many technical wonders and more than a few negative jabs based on some poor life choices made along the way.

But when I learned of his passing - one of my first thoughts was "maybe this will bring greater attention to the need to fund research in the area liver, pancreas and bile duct cancer". Likely a selfish thought with so many clearly grieving his loss, but it was my honest response.

Bz

Amsred,

You asked 3 specific questions and when I found myself in your situation I really wanted my specific questions answered. So, I am going to give a go at offering you answers to the questions you asked.

1.    How long is a very difficult question to answer, we have seen very slow moving versions of cc and others that move quickly or secondary medical issues that cause decline. If your mom has declined treatment, then engaging with hospice is a direction you will want to likely pursue as they will provide comfort care, specifically pain management.  Pain, fatigue and digestive issues are the common issues that may impact your mom

Ashley,

My sympathies to you and your family. I hope that knowing your mom is at peace will bring you comfort in the days ahead.

Bz

Katie,

My dad had 2 chemo-embolization and his number one side-effect was fatigue followed by chills. Lasted a good 3-4 weeks after each procedure.

Bz

Grace4Five,

You've come to the right place - vent away and allow yourself to feel your moment of sadness.  CC is a very challenging disease and the fact that there really seems to be no pattern or consistent trends is what contributes to the complexities in providing treatment.

It sounds like your mom has a good medical team in her corner  who are watching her closely and will offer treatment options where possible. As well, I suspect you will have others here share some thoughts on what a lung mets might mean in the grand scheme of cc.

Sometimes gratitude for what we have seems insignificant when compared to our hopes - but in the end gratitude and grace can make this journey much more peaceful.

Bz

7

(7 replies, posted in General Discussion)

Adamaria,

My dad passed from CC and my mom has dementia so I have perspective from both sides of the challenge you are facing. This is one persons opinion but I would suggest that you need to really assess the degree to which your mom can make informed decisions about her health care; can she fully comprehend the information being shared by her doctors, does she understand the consequences of the decisions she is making and lastly does she have the cognition to respond appropriately to questions and follow instructions? The answers to these questions may strongly influence the care approach you may have (or want) to take with the CC.

Bz

A few weeks back I posted that a co-workers 17-year old daughter had been diagnosed with a

I feel like I should know the answer to this question - but I don't ... I thought there was a list of Doctor's that others have used? I see the list of Major Cancer Centers but am not finding information on specific Doctors at these centers.

I am specifically looking for recommendations at MD Anderson in Houston.

Thanks,

Bz

Hello CC family,

I am hoping you can offer me some advice. This weekend we will be heading out for our annual Memorial Day camping trip. The same group has camped together for many years though during the year we rarely see one another other than our camping trips during the summer and the holidays. 

One of our campers is going through treatements for what I have been told is brain cancer. I am not sure why, but I am feeling very aprehensive about how I will communciate with her this weekend. I saw her last 3-months ago and that visit was fine - but I have been told she has "really changed" and maybe that is causing much of my aprehension. I just don't want to say the wrong thing. Maybe I just am scared and sad at the thought of loosing another loved one to cancer?

In any case I would appreciate any suggestions you may have.

Thanks,

Bz

Jules,

Sorry you are facing this health crisis - and with your experience it is to be expected that you may be fearful. Use your knowledge to your advantage, share your family history and be insistent that proper testing is performed.

Bz

Thank you to everyone for the kind comments and prayers on behalf of

This morning I learned that a co-workers 17-year old daughter has been diagnosed with a

While ultimately a personal choice - with 20/20 hindsight ... had surgery been an option for my dad I (now) know I would have encouraged him to follow up with chemo. Most of the standard cc chemo protocols seems to be quite manageable (my dad had few side effects from chemo) and with what I have learned I would have rather he take out that insurance policy.

Just another opinion to ponder ...

Bz

UCLA,

I am going to somewhat echo what others have said, but maybe with a slightly different tinge.

I am a bit (ok .. a lot) of a control freak and I am very analytical by nature. When my dad was dx

I echo the words of those who have posted above. The cc family is just that a family - and while I can't say I "know" you, I feel like I do. You were in my thoughts this weekend and your post may answer why. I don't know about others, but there are just times when a cc family member is very active in my mind and I know they need prayers for strength and healing.

I will add another thought ... and that is thank you for being a teacher. The cc experience comes with many ups and downs and though it's been over 3 years since my dad passed, I still come here (and try) to offer advice when I can, but mostly I feel it is I who benefit. I learn many valuable lessons by the examples demonstrated here and the lessons I have learned from you have been many.

You can count on continued prayers being lifted up in your name!

Bz

My dad was of Irish descent so thinking about my dad today is only natural. Other than an Irish name, dad's most telling Irish feature was "if" he tried to grow a beard it would come in red, though he was not a red-head. I carry dad's sort-of red gene as I went from being blond as a child to more of an auburn as a teen (my hair all but becomes copper at the tempels) and these days I just tell my hairdresser to try and find a close match to the real me. Mom used to make a traditional (American) Irish dinner - corned beef, cabbage, potatoes and carrots for St. Paddy's day and the reality is dad really hated corned beef. He used to subtly suggest she didn't have to but mom felt it was her duty to once a year. In the end dad found with enough mustard, the corned beef was palatable.

I hit the local grocery store on the way to work today and picked up Irish donuts (they have a heavy dose of green food coloring). Some may squirm at them, but I love them and thought it was a good way for the office to start their day   since I couldn't supply them with a green beer ... :-) .

Hope everyone has a good (green) day today!

Bz

My dad had two (or three??) chemo embolizations. He had good

19

(15 replies, posted in General Discussion)

Lainy,

Sometimes it's too easy to convince oursleves that our efforts won't matter, but they will and do - as you are prooving! And chiming in on Marion's comment ... here is a quote I keep posted by my desk ...

"If you think you are too small to make a difference, try sleeping with a mosquito."

20

(15 replies, posted in Members' Cafe)

Lainy .. it was a real pleasure to meet both you and Robin! There are so many people here that I feel "I know" ... but now I can say I really know Lainy!

Gavin,
Lainy says you may make your way through our town in the near future ... maybe we'll have an opportunity to meet too... smile

Bz

21

(134 replies, posted in General Discussion)

Hans,

Again ... thank you for continuing to share Kris with us. When I first came to this board Kris was already here - and like so many I found great comfort, hope and knowledge in her posts. At a personal level I found her so very interesting as she was living a life I had only dreamed of; namely living abroad. And, I was always curious about how a girl from South Carolina learned she had cc in Scottland and lived in Sweden.  From her posts, I could always see how Kris relished her life with you through, but like so many people "home" holds a special place in our hearts - and so it appears to be true for Kris as well.

May you have safe and peaceful travels as you take your Kris home.

Bz

22

(21 replies, posted in General Discussion)

While we may anticipate a loss and think we are prepared - the reality can be quite different. I hope you found joy in remembering and honoring your mom today and know that many in the cc family send prayers of peace and strength your way.

Bz

23

(134 replies, posted in General Discussion)

As many others have expressed, the right words are so very hard to come by. So to Hans, Kris' parents and sister I extend my deepest condolences.  Kris had a spirit that transcended the anonymity of the internet and allowed so many of us to feel that we truly knew Kris and therefore we too feel the deepness of her loss.

Bz

24

(2 replies, posted in Members' Cafe)

I have loved the song Angels Among Us, performed by Alabama, for years. There have been times that this song has played on the radio just when I needed it most.  While it doesn't get much air play during the year, I tend to hear it multiple times during the holiday season.

I really liked this combination of song and Christmas images and thought I'd share it here today.

http://www.youtube.com/watch?v=PB7mDvfLhrg

Merry Christmas to you and yours!

Bz

Kim,

Not sure if this will fall in the category of inspiration but I was struck by the thought. Yesterday I attended a memorial service for a friend's mother in law who passed away at the age of 89. Sybil had led a good life and was generally in good health and really it was age that ultimately caused her passing.

After the family had spoke about grandma the pastor got up and read a scripture and then went on to share her own thoughts about death and loss and she said something that truly struck home with me and that is that Grief is the last gift our loved ones give to us.  It is a period to feel sorrow  and loss for their passing and then with time find comfort in our memories.  I know I have never considered grief in this context and it really struck a chord. Maybe this idea of grief as a gift will also help your sister.

Bz