Dear Lola,
I'm so sorry to hear about your mom. This board really helped me through caring for my mother. It was wonderful for finding out what questions to even ask. I see that you are in Ohio. That was where my aunt wanted my mom to go for another opinion as they were very helpful when my other aunt was going through the same thing.

Hugs to you and your momma,
Michelle

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(5 replies, posted in In Remembrance)

I am just so sadden by this news.  Got the news this morning...it wasn't a good day after that.  It did give me the patience for my students for the rest of the day knowing that any of us would give anything to have Christopher as a feisty, talkative student in their class for just another day.  My thoughts are with the family.  I know now is not the time for them, but for others that are grieving, a wonderful resource on facebook is transcending loss.  It always helped me get through those rough days without my mother. 

https://www.facebook.com/transcendingloss

If anyone reading this post is friends with the family, my husbands knows how much this story has bothered me. And he knows how important it is to bring awareness not only to this disease but to help out the family. He has brought this story to his reporter who would like to do a story about the family. He works for Fox News. I emailed a family friend but have not yet heard back from her. I'm sure mom and dad may not be up to it, but if any other family members are willing please let me know. I was hoping to have the story run before there next fundraiser this weekend.

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(15 replies, posted in Introductions!)

Hi Roxanne,

Will you go to kaiser sunset for surgery? I forget the name of my moms surgeon. We just called him batman, because he'd swoop in to make a visit bet was not around much for questions. We would always go down to USC to see doctor lenz for second opinions and kaiser did a good job following their advice.

Thank you Pamela.  I appreciate your kind words.  I do think of Lauren often and I am still surprised she didn't beat this thing.  I did order Christopher a bunch of books this morning, and then got news that he wasn't doing well.  Everyone was so kind when my mother was ill and she loved her home decorating magazines while she was going through chemo.  And Pamela, yes, you are right, a donation would be the best way to go.  I'm sure the family needs as much support as possible through this.

Here is Christophers facebook page.  I did ask if I can share it:

https://www.facebook.com/teamcjwilke?ref=br_tf

There is a fundraiser for this family this weekend, so if you happen to be close to the Burbank area please stop by.  I did hear from the family friend, and Christopher came home on Hospice care.  I am beside myself.  So sad, such a beautiful boy.  Please keep him and his family in your prayers.

Thank you Marion for responding to my post. I hope all is well with you. I am glad to hear they are in touch with MD Anderson. Dr. Lens, here is very knowledgeable, but after that im just not sure. I did pass on the Cholangiocarcinoma foundations message board info. This proved a great tool for me.  However, I stumbled across the website 8 months after my mom was diagnosed.

Hi all, it's been a long time since I posted here. I do come back to see how ever one is doing or for new grief advice. My mom passed away with this dreadful disease back in 2011. Just this weekend a friend posted a picture of her co-workers darling 12 year old son who is battling this disease. My heart is breaking for them. I feel like I need to be doing something for them. Yes, I can donate to the organization that is collecting for them. And they are doing plenty of fund raisers that are close to me, so I can stop by.

Anyone with younger children any advice on what this 12 year old needs or might like?

Doctors all say this is a rare form of cancer that is for the elderly...how do we all make a difference? This just isn't the case anymore. Pamela's daughter, Lauren,  was so young and vibrant. How can doctors just say this disease is a fluke and you've been dealt bad cards.

Sorry, for my rant, I'll go back to the reason for my post. Any suggestions on what to put together for a 12 year old boy would be greatly appreciated.

Hi all, it's been a long time since I posted here. I do come back to see how ever one is doing or for new grief advice. My mom passed away with this dreadful disease back in 2011. Just this weekend a friend posted a picture of her co-workers darling 12 year old son who is battling this disease. My heart is breaking for them. I feel like I need to be doing something for them. Yes, I can donate to the organization that is collecting for them. And they are doing plenty of fund raisers that are close to me, so I can stop by.

Anyone with younger children any advice on what this 12 year old needs or might like?

Doctors all say this is a rare form of cancer that is for the elderly...how do we all make a difference? This just isn't the case anymore. Pamela's daughter, Lauren,  was so young and vibrant. How can doctors just say this disease is a fluke and you've been dealt bad cards.

Sorry, for my rant, I'll go back to the reason for my post. Any suggestions on what to put together for a 12 year old boy would be greatly appreciated.

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(16 replies, posted in In Remembrance)

Pamela, I'm sitting here crying.  I am so very sorry for your loss.  I know sorry doesn't begin to cover it.  Lauren was my hope story.  I had so much hope for her and if anyone was going to beat this cancer it was going to be Lauren.  I love the picture of you two with her beautiful smile.  Please know that you and your family our in my thoughts.  Please take care of yourself. 
Hugs to you, Michelle

Tonight we were watching a previously recorded episode of gray's anatomy. I came in late. My husband was catching me up on the episode and said the lady had the same thing my mom did...cc. I didn't go back to see if that happened. They didn't have too much of the plot on it. But I was glad it was being brought up on prime time tv.

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(4 replies, posted in Grief Management)

I haven't been around here lately.  I just wish I had more to contribute.  I know when my mother was going through this all I wanted for her was success stories...and they are out there.

Well, today, in fact, 20 minutes ago my mom passed.  It has been a tough year.  My mind was taken off my mothers death, by my daughters depression.  Good news though, my daughter is finally back home and doing great.

Can't believe it has been a year.  In the beginning I had many messages from mom, especially when I have needed them.  Not so much anymore.  However, just a few weeks ago, I had a dream and she was telling me about the new bedroom furniture she just got and that Canada was just beautiful.  I do keep a list of these dreams on my phone that way when I need, what I call a mommy message, I am able to go back and reread the dreams.

Isn't it amazing, no matter how old we are, we will always still need our momma.  That was the hardest part for my mother to leave.  When all her friends asked her how was she going to leave her grand daughter...my mom always said, she will be fine, she has a mother who will be there to take care of her.  However, I am having a hard time leaving Michelle, alone without a mother.

Hugs to all of you that are going through this process also and thank you for allowing me to vent.

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(10 replies, posted in General Discussion)

I'm so sorry you are feeling that way.  You have every right to feel that way too.  If I am correct, you are with Dr. Lenz now, you couldn't ask for a better doctor.

Be kind to yourself, you tried. You can't go backwards.  Have your pity party every so often and then move on from it.  If that doesn't work ask the doctor for something for depression.  Hopefully it will help lift that feeling from you.

And I know what you mean about going to the doctors and them never finding anything.  I have had the same problem for a year and half.  I waited to go for the first eight months because I thought it was just stress.  HOwever, when isn't life stressful...it is always stressful about something.

Hugs to you,
Michelle

Hi, I'm Michelle (42 years old)...live in Valencia, ca. About 45 minutes outside of Los Angeles. I have a beautiful 15 year old daughter and a wonderful husband of almost 3 years. I found this site while looking for answers to my mothers cancer. My mother was 62 when she went in for her basic gallbladder surgery, which ended up not happening because of what they found when they opened her up on oct 7, 2010. November 4 she had her gallbladder and 1/3 of her liver removed. January 2011mom started gemzar and xeloda and radiation in march. June 2011 cancer returned and mon started on a new chemo regimin. August, tudors increased in size and instead of trying a different type of chemo that would have done more harm, mom decided to go for quality of life...which she never got. I was fortunate my job as a teacher gave me the time to care for my mom the last couple of months. My step dad and I would alternate says caring for mom. She was completely coherent until she lost her battle on November 7, 2011.

Awesome news, thanks for sharing.

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(6 replies, posted in General Discussion)

Hi Shar,

I'm glad your mom is feeling better now that her stents were replaced.  The Dr's should advise on what to do next.  In my mothers situation they wanted to start a new treatment.  However, He also stated that it was going to be tough on my mothers system and that when the tested the tumor, it didn't have any reaction to it.  The Dr. did know that my mom wanted to keep fighting this.

When we went for the second opinion, the dr. suggested the same thing, but then offered two different pills to help prolong life, since they figured my moms quality of life would suffer from the chemo.  My mom had both chemo cocktails your mom was on.  They wanted to do Irenok...(not sure about spelling).  My mom chose to focus on quality of life than trying to deal with the chemo.  Since my moms original surgery to have her gallbladder removed she only had one problem after another.

Hope that information helps.  The one thing I wish we knew earlier was knoing about palliative care.  My mom needed lots of shots after her chemo treatments and she didn't want to do them herself, so we would go down to the hospital every day to do this.  After awhile, she wasn't able to make the trip by walking.  We had to get her a wheel chair.  However, had we known about palliative care, a nurse would have come to the house to do the shots.  On a bright note, it got us out of the house and we always went to lunch afterwards.

Take care of your momma and yourself during this time.

Hugs to you,
Michelle

Absolutely beautiful. Thank you for sharing.

Oh Michelle, I know this is late, but I am so sorry for your loss. I appreciate the late update but I would have not seen your post otherwise. Just like your mom, my mom was diagnosed after her gallbladder surgery. And our year was never peaceful since then. My daughter was also the only grandchild and is having a very difficult time with it. She had a difficult time since she was diagnosed and tried to keep a distance. I hope your children are doing better now and hopefully mine will follow.

Hugs to you,
Michelle

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(4 replies, posted in In Remembrance)

Jenna, I couldn't have said it any better.  It has been 2 and half months since I lost my mom and I just don't know what to do with my self.  I find myself walking in circle in the house.

Hugs to you,
Michelle

Maria,
I am so sorry for your loss.  And I know exactly how you feel with losing my mom only 2 months ago.  My mom sat up in her last moment and told us she couldn't breathe...that is the vision I go to sleep with every night and wake up with every morning.  I wish I could tell you it gets easier.  Many tell me that and they also tell me that those last moments will fade with time and I will remember the happier times.  I'm sure in the long run we will both be grateful that we were there at the very end.  I don't know if we would be able to handle it if they went while they were alone.

You got to be there in the end for your mother and you did all you could.  I still find myself trying to understand the why of this disease.  Your mom was so young...my mom was only a few years older.  I will just start crying in a store when I see someone my mothers age with their mother...that was suppose to be me in twenty years.

My husband gave my a photo (negative) scanner for Christmas...yes, he knows my rules, nothing that plugs in...but I love it.  I've been going through all my old pictures and my moms old pictures.  Even though she lived a short 63 years, she had a great life.  I guess we only take pictures of our good times.  I just wanted to share that with you because it makes me feel good while doing it.  I still cry several times a day.  I don't know when it will hit me that she is really gone.

If you need someone to talk to please feel free to send me an email.

You will be in our thoughts and prayers Maria...please take care of yourself.

Hugs,
Michelle

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(10 replies, posted in General Discussion)

I gave these out at my mother's BEAT cancer party.  Everyone still wears them.  I just wish it was a little smaller...it falls off of me all the time.  I also had my mother in law make purse pulls with a silver tree charm and green and brown crystals.  They are beautiful, and when someone asks about it...I get to explain cholangiocarcinoma to them whether they want to hear it or not. wink

Laura, you and your family are in my thoughts and prayers. 

Hugs,
Michelle

I agree with Marions.  You had great success with the last chemo...almost 2 years.  Your success will continue.  Dr. Lenz is an amazing man who does not want to give up.  He always comes up with something else.

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(20 replies, posted in Introductions!)

Dearest Cheryl,

You will get lots of help and support here. I'm glad you posted. I'm glad to hear that your chemo is working and that your tumor has shrunk. That is wonderful news. I'm also glad to hear that you are tolerating it well. Which type of chemo are you on. My mother did both xeloda and gemzar, and then another one (my brain isn't working quite right...I don't know why the name just left my head).

You will find a lot of success stories here and lots of people who are survivors for over several years. They are all truly an inspiration. Everybody reaction to cc is different, so no one can say how long anyone has. The good news is you feel good and your tumor has shrunk. Attitude is so important and I'm glad to hear you have a good attitude.

Many people will continue with chemo as long as it is still working. Many people will be on it indefinitely. But as long as it is working and the side effects aren't too bad...keep going.

I wish you the best of luck with your treatments and a very healthy 2012.

Summer girl, yes the fatigue is normal. My mom was 63. It would drive her crazy because there was always something she wanted to do but couldn't because she was so tired. We limited visitors to one a day because it would tire her out. However, when she was feeling really tired we would talk to the doctors and get a blood transfusion. She always felt so much better afterwards. In fact I would live to sit with her during her transfusions because her face and chest would get so rosy towards the end of the transfusion. She always looked and felt great afterwards.