Topic: Any new hope?

Hello.  I am the mom of a beautiful girl named Amanda who lost her life at 21 years old to intrahepatic cholangiocarcinoma, something we had never heard of. She was on the dean's list at NAU in her sophomore year when she suddenly became ill. "Not feeling well". Pain in her right side and fever. She was diagnosed March of 2011 and she left us on March16th 2012.  We had the best reasearch doctor, went through 3 different types of chemo treatments and nothing helped. We were Hopeful til 5 days before we lost her, when we found out that her then current treatment, erbitux was not working either.
   I am so saddened that there is nothing that can treat, even slow down this monster.  Is there a rise among young adults with this cancer? Did we miss something or is their simply nothing that can be done? I have read everything I can regarding this cancer.  Just seems there there is no good news regarding this type of cancer.

Re: Any new hope?

asunrae, welcome to our extraordinary family but I am so very sorry to read about your daughter. I cannot imagine, and I simply don't have the words. I have a Grandaughter at NAU and she is going in to her Junior year. We do have more younger people joining our CC site and we just don't know whys. The only thing we can come up with is environmental as a guess. There is some good news as research is being done now and in fact we were excited to see a TV MED program last week that mentione a man having CC. That was a first. I think it was NY MED on ABC. Know that you did the best you could and if you don't mind I found a poem about losing a child, I would like to post it for you.

I'll Lend You A Child
by Edgar Guest

"I'll lend you for a little time a child of mine," He said.
For you to love - while she lives
And mourn for when she's gone.
It may be six or seven years
Or twenty-two or three,
But will you, till I call her back,
Take care or her for Me?
She'll bring hers smiles to gladden you,
And should this stay be brief
You'll have her lovely memories as solace for your grief.
I cannot promise she will stay,
Since all from earth return,
But there are lessons taught down there
I want this child to learn.
I've looked this world over
In search for teachers true,
And from the throngs that crowd
Life's lanes, I have selected you.
Now will you give her all your love,
Nor count the labor vain,
Nor hate Me when I come to call to
Take her back again?"
The risk of grief we'll run.
We'll shelter her with tenderness,
We'll love her while we may,
And for the happiness we've known
Forever grateful stay.
But should the angels call for her
Much sooner than we've planned,
We'll brave the bitter grief that come
And try to understand."

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.

3 (edited by PCL1029 Tue, 24 Jul 2012 22:12:47)

Re: Any new hope?

Hi, asunrae,

This is just my humble guessing ,it seems more young  CCA patient appears monthly here or the story of them became known.

My guess is if this young generation start to smoke early(like in their teens); and compound with  the fact that younger generation now are much obese than the generations before them; adding to  it, is if they like sushi( uncook raw fish of lower quality); or enjoy Thai or Vietnamese "hot pot " without  boiling hot water to cook the ingredients to well done; then I will not surprise this young generation (20-early 30's) will have develop bile duct cancer.
Of course the official risk factor for this group of young patients is PSC.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Any new hope?

asunrae, I'm so sorry for your loss. I can't imagine the grief that the loss of a child brings. You and your family are in my prayers.

Re: Any new hope?

Dear Asunrae,

I am so sorry to hear of the loss of your daughter.  My husband passed in much the same way.  Very quickly.  It is hard to accept that someone so active and healthy and in her case also so young can be taken so quickly by this horribly disease.   Our only consulation is that they did not have to suffer for a long time and are now at peace.  My husband was 62 and I thought that was too young to lose him but to lose a child and at such an early age I can't even imagine.

I know how it feels to feel helpless or that you could have or should have done something differently, but there is nothing you did or didn't do that would have changed things.  I felt the same way in the beginning and still do sometimes, but realistically I know I did the best that I could with the situation that was given to us.  It is nobody's fault it just is what it is.  It's not right, it's not fair, but it was out of our control.

There is no rhyme or reason to this disease and we are seeing more and more younger people being diagnoised.  There are so many questions and hardly any answers, but hopefully that is slowly changing.  Although it is too late for us, hopefully others will benefit from our experiences and with more awarness and research, some day we will beat this cancer. 

You have my deepest sympathy.  My thoughts are prayers go out to you and your family on the loss of your dear daughter.

With Love & Hugs,
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.

6 (edited by eli Tue, 24 Jul 2012 18:57:28)

Re: Any new hope?

Barbara, welcome to our extended CC family. It breaks my heart to read about your beautiful Amanda. I know there is nothing I can say to ease your pain. I am very sorry.

I do want to give you an answer about CC among young adults.

We know that Intrahepatic CC has been on the rise. Intrahepatic CC specifically. Extrahepatic CC remained fairly constant.

Researchers linked the rise of Intrahepatic CC to the following factors: Hepatitis B and C, alcohol consumption, obesity. These risk factors cannot explain each individual case. They explain the overall upwards trend.

Unfortunately, we don't have any breakdown of this trend by age. Is the share of young patients going up? Down? Stays the same? We don't have any reliable numbers to say for sure.

Please accept my deepest sympathy.

Hugs,
Eli

Re: Any new hope?

Hi.  I'm 32 and was diagnosed with intrahepatic CC about a year ago.  I had a liver resection, which removed the tumor and then had chemo and radiation.
My surgeon told me intrahepatic CC is rising among young people and they don't know why.  I didn't have any risk factors.  I don't have hepatitis, don't smoke, and I am as skinny as can be.  I did drink alcohol sometimes, but just a few times a month.  I wish I knew why I got it.

I am so very sorry for your loss.  She was so very young and I'm sure you miss her terribly.

Thanks for sharing your story.

Susie

Re: Any new hope?

Thank you everyone for expressing your care and concern regarding my beautiful daughter.  She was beautiful, and I believe God took her home and all of us who loved her will see her again.
     Back in the fall of last year, one of the nurses at out oncology center where we went for Amanda's treatments made me aware of this organization.  She was looking online at home for info on this cancer. And found this Foundation. So I ordered 10 wrist bands, one of which I wear constantly along with my Love4Amanda band (check out Love4Amanda on Facebook) and my multi-colored salvation wrist band which is an expression of my Faith in Christ.
     I look forward to the day when we can stop intrahepatic cholangiocarcinoma in it's tracks.  We need to press forward and continue to run the race.

Re: Any new hope?

Hi! I learned oct of last year I have ICC. I was 29 at the time. I'm 30 now.

I'm so sorry you lost your daughter so fast. It breaks my heart. I have two young babies, and they keep me going. I live for them, and my husband.

Praying for your family.
Tiffany

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Any new hope?

Dear Asunrae-
I lost my husband to this disease last year- We/I have a little girl who is now 3. This gives me a sense but only a sense of the loss that you must feel. I am very sorry for the heavy cross of grief that you must carry now.
My sincere condolences,
CM

Re: Any new hope?

asunrae...My heart breaks for you to have lost your beautiful, young daughter to this disease as the natural order of things are for us parents leave this earth first.  I so much wish for your broken heart to heal with time.

You must find comfort in knowing that you have done everything possible for Amanda; Cholangiocarcinoma is difficult to detect and treat. And, you are so right in saying that a cure must be found for this cancer.   

Please stay with us on this board.  We are in this together.

Hugs,
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