• From: San Ramon, CA
  • Registered: Thu, 05 Jul 2012
  • Posts: 29

Topic: Wanted to take a moment to introduce myself

Mom was diagnosed with intraheptic CC last Aug and had successful resection to remove the right side of her liver and a little bit of the left side of the liver along with her gall bladder. Her surgery was done at UCSF, mom recovered from the surgery really well. There was no plan to administer Chemo or Radiation following the Surgery. 3 Month follow up Scan and blood test results revealed lesions on her remaining liver with elevated CA 19 9. We were referred to an oncologist at UCSF, first combination of GEM/CIS did not have any affect on mom's CA 19 9 numbers, so her oncologist started mom on OX/Xeloda combo. After the first two treatments, mom's CA 19 9 dropped from 34382 to 17614, how ever the new combo seems to have stopped working, she had 3 more treatments but the numbers are not coming down. Her last CA 19 9 value is at 50161. The oncologist doesn't think the new combo is working, her last treatment was on 06/08. The last month has been hard on mom, she's had several fevers and was prescribed antibiotics to treat the infections.

Mom's most recent bilirubin reading is at 10 +, her oncologist referred us to a radiologist to see if they can stent her to drop the Bilarubin level. The attempt failed due to the way her bile duct was rerouted to her small intestine from her surgery, they said it was impossible to get to. She is waiting to get an external drain installed either today or tomorrow. I'm hoping for a successful procedure.

I was at a lost and very desperate as the oncologist seems to have run out of new chemo combos for mom to try even if the bilirubin drops. They may have some clinical trial available at UCSF if the bilirubin level gets controlled. How ever  I was not very optimistic. I found Marion's email on this site and she is the most wonderful, caring person like so many other people on this board are. I followed Marion's on contacting Stanford Radiology to seek for other treatment options. I was able to get mom's records sent to Stanford and we have an appointment to see Dr Koong next Wednesday.

I have been reading this site a lot, and in some way I feel very connected to many of you already even though this is my first time posting. Many thanks to wonderful people on this site who have provided so much support to caretakers like me.

Marion, this is Anne if you didn't guess already smile

Anne
  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,231

Re: Wanted to take a moment to introduce myself

Dear Anne, welcome to our extraordinary family but sorry you had to join us. What a wonderful daughter you are as you have done so much research and have done all the right things. And yes, you are so right about Marion.
I would have suggested a 2nd opinion but you did that right also. I am so hoping that Dr. Koong comes up with something. Wishing you the best of luck on the external drain, my husband had one for a year. Please don't be a stranger here, now as you will find it is very cathartic to post on our site. Waiting for better news next week.

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.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,841

Re: Wanted to take a moment to introduce myself

Hi Anne,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I'm glad that you have joined us all here as you will get tons of support and help from everyone here.

If we can help with anything at all then please just ask or post away and we'll do what we can to help. We are all here for each other and we're here for you too. I will keep my fingers crossed that they manage to get the drain in for your mum and please let us know how that goes. And also, I will keep everything crossed as well for your mum with her app next week with Dr Koong and lets hope much good will come from that meeting. Let us all know how that goes as well and remember that we are al here for you.

My best wishes to you and your mum,

Gavin

PS - And about what you say about Marion, heck yes, I so agree with all of that!

  • Registered: Fri, 12 May 2006
  • Posts: 8,175

Re: Wanted to take a moment to introduce myself

Anne...so glad to see you on this board.  I am sure that others will follow Lainy, Gavin, and me in welcoming you to our site.  You are in the right place for help, support, understanding, and information. Collectively we have achieved something special in this world of Cholangiocarcinoma. 
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
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,489

Re: Wanted to take a moment to introduce myself

Hi Anne and welcome to this site. I hope Dr. Koong can help your Mom. You chose the right person to contact when you chose Marion. She has helped me on many occassions and I feel so lucky to have her in my corner. She is a wonderful person and so knowledgeable. I wish you and your Mother all the best.

-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • From: Irving, Texas, USA
  • Registered: Wed, 11 Jul 2012
  • Posts: 13

Re: Wanted to take a moment to introduce myself

Welcome Anne,

I feel like I'm following in your footsteps, just about 4 months behind you in your mother's battle with cc.  I'm glad you went the route of a second opinion.  Please keep us posted as to your mother's progress!  Best of luck.  I'll be thinking about you.

Misty

7 Reply by marions (edited by marions Wed, 18 Jul 2012 22:33:31)

  • Registered: Fri, 12 May 2006
  • Posts: 8,175

Re: Wanted to take a moment to introduce myself

Thank you.  You are too kind. 
Sarah, in her interview with Oncoview, commented:  "we did not provide this community - the patient community made it happen." How true it is.
I once asked one of my favorite physician: "who is destined to be touched by this cancer."  His response:  "only the nicest of people."
I could not agree more.
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
  • From: San Ramon, CA
  • Registered: Thu, 05 Jul 2012
  • Posts: 29

Re: Wanted to take a moment to introduce myself

Thanks for all the kind words. I feel very touched and the replies brought me tears (in a good way, if that makes sense). It's a really warm feeling to know there are so many caring and supportive people on this site and we are not alone in this fight. I wanted to post about my mom for a while now, but needed some courage and Marion gave me exactly that!

Lainy, I really enjoy reading your stories of Teddy, your positive attitude is soooooo admirable.

Gavin, I always look for you posts in the New Developments sub forum, they give me sense of hope.

Pamela, I have been following Lauren's journey, she is so lucky to have such a wonderful mom! Best of luck in her new treatment regimen.

MistyK, I see you are relatively new to the forum like me, I will be following your FIL's journey, best of luck!

Anne
  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,231

Re: Wanted to take a moment to introduce myself

Anne, I know you won't believe this yet, but you are doing all the right things. I promise you that once you have a game plan the fright turns to fight. We always try to be realistically optimistic. Like Teddy used to say, "OK, now we know, let's do something about it". What ever IT turned out to be. I have often wondered why CC picks such a remarkable group of people, so courageous, so loving and kind, almost like it has a brain of it's own. I often feel if our members ran the World, what a world this would be. You sound like another one of those Members and I will be saying a lot to you of, be strong!

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.
  • From: Wisconsin
  • Registered: Sun, 07 Sep 2008
  • Posts: 1,990

Re: Wanted to take a moment to introduce myself

Anne,

Glad you decided to join in.  You will get all the help and support you want or need from this wonderful froup of people.  We have all been there in one way or another and are here for you.  Hoping for the best for your mom.

Darla

"One Day At A Time"
  • From: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 414

Re: Wanted to take a moment to introduce myself

This is such a wonderful website, thank you to all those involved. The site gives me great information, support, comfort and love. So blessed to be part of this incredible organization.
Lisa xxooo

Everyday is a gift

lisacraine's Website

12 Reply by Nancy246 (edited by Nancy246 Fri, 20 Jul 2012 13:28:05)

  • From: Revelstoke BC
  • Registered: Sat, 01 Jan 2011
  • Posts: 552

Re: Wanted to take a moment to introduce myself

Dear Anne, Welcome. Sorry to hear about the recent turn of events for you mom. Sending positive thoughts for a good appointment on Wednesday and coming up with a good battle plan! Let us know how it goes. Let your mom know there is a whole lot of wonderful strangers/friends rooting for her. Hugs. Nancy

Loving my husband from afar.