• From: San Diego
  • Registered: Mon, 15 Oct 2012
  • Posts: 2

Topic: New member

Hi, I am from San Diego, CA. I am being treated at UCSD medical group. In early April of this year, I was diagnose with cc stage IV in my bile duct and spread to my liver. I was not a candidate for surgery. I started with the two chemos Cisplaten and Gemzar for 12 cycles. I tolerated the chemos without major side effects. I had a CT scan and found out that the chemos were not working and the cancer grew. Last Thursday 18, I just started a new therapy with the chemo 5FU once every 2 weeks for 10 weeks. My question is; if anybody has gone thru the same path or any suggestions.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,315

Re: New member

Dear agcesena, welcome to our extraordinary family but sorry you had to find us. My husband did not have chemo but I know there will be some members joining in to answer your question. We are big believers in 2nd and 3rd opinions and if you have not read up on CC it would be a good thing to do some research as knowledge is our best tool to deal with this. You have come to the best place to be as we have such a smart and loving family here. Please keep us posted on your progress as we all truly care.

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: San Diego
  • Registered: Mon, 15 Oct 2012
  • Posts: 2

Re: New member

Thank you very much Lainy.

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,777

Re: New member

Hi,
http://www.cholangiocarcinoma.org/punbb … hp?id=7843

http://www.cholangiocarcinoma.org/punbb … hp?id=7792

http://www.cholangiocarcinoma.org/punbb … hp?id=8678

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.
  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: New member

agcesena...a warm welcome from me to you.  I am sorry to hear that you did not respond to Gem/Cis but, as you can see in Percy's posting other treatment options are available to you.   
http://www.cholangiocarcinoma.org/punbb … hp?id=7843
I also agree with Lainy in that you should obtain a second, professional opinion from a center very familiar with this disease; Dr. Heinz Lenz or Dr. Anthony B. El-Khoueiry,  USC would be a good choice.  To confirm that surgery is not an option a referral to Dr. Robert R. Selby might be advised. 
Please keep us posted.  We care.
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
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 5,056

Re: New member

Hi agcesena,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what you are going through. But I am glad that you've joined us all as you have come to the best place for support and help, and I know that you will get a ton of both from everyone here.

I can't offer any personal experiences with chemo as my dad never did that, but I am sorry to hear that the Gem/Cis did not work for you. Please do not give up hope though and my fingers are crossed for you for much better results from the 5-FU. And as Percy has shown with the links he has provided for you, other treatments are available.

I so hope that you will keep coming back here and please let us know how everything goes for you. We are all here for you.

Best wishes,

Gavin

  • From: Roanoke, VA
  • Registered: Fri, 05 Oct 2012
  • Posts: 90

Re: New member

Hi agcesena
My husband went through the same regimen of chemo. Gem + Cis worked for 5 months for him, then stopped. He had 5FU + couple other ingredients (folfirinox) and initially cancer marker was growing, then dropped, then started going up again. Based on my husband experience, I would check for  alternative options. Folfirinox is very harsh chemo to tolerate, but does have good results for some, but not others. Although it didn't work for my husband, it might work just fine for you. Do they keep an eye on your cancer marker?
Wishing you the best, Alla

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,315

Re: New member

Hi Alla, How are you doing? Didn't you start work this week? How did that go? How are the boys? I have been thinking about you.

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: Roanoke, VA
  • Registered: Fri, 05 Oct 2012
  • Posts: 90

Re: New member

Yes, Marion. Worked this week, starting tuesday. Boys are going to school. Seems that they are a little better. I was trying to "hide" at my cubicle whole week, otherwise I was falling apart when someone would say kind words. So still going through ups and downs, and I'm sure it'd last for a long time. My older son is in marching band, so went to watch his high school football game - nice distruction... Thanks for checking on us! Alla

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,315

Re: New member

Alla, thanks for the update. It will take time and once again you are doing the right things. It will be 2 years for me in a month and I still tear up when talking about good Memories. How cold and unfeeling would we be if we didn't. Stay strong and I promise it does get better.

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: Roanoke, VA
  • Registered: Fri, 05 Oct 2012
  • Posts: 90

Re: New member

Sorry, Lainy. Not sure why I said Marion... Having hard time today - first saturday by ourselves with my boys. Not feeling that good either, which doesn't help. Physically and emotionally exhausted.
Sorry, agcesena, for "taking over" your post...

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,315

Re: New member

Alla, no apologies on this Board! I love being called Marion as I admire her so much.
It is still too soon for you NOT have these moments you are going through. Know what? When I don't feel good I feel more down about Teddy as well. Perhaps our mental defenses are down when we don't feel well. I know you have some big hurdles ahead of you with 1st Holidays but you will get through it, you will for the boys. Alla, I am so very proud of you  but remember to be kind to yourself!

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.
  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: New member

February 7, 2007.
Dear Alla,  I so much understand, as I went through the stages of grief, disbelief, yearning, anger, and depression until one day, dear Alla, I found myself accepting that he won’t return. Until the day of his passing I had never known to live one day at a time; to me it was a strange concept and yet much to my surprise I was doing just that. Although, I did not think it be possible I survived the “first” of everything; holidays, birthdays, wedding anniversaries, etc. and to this day I don’t know how it happened – it just happened.  I drew a “blank” envisioning my life in the future so I took baby steps - one day at a time - not realizing that already I had been moving into the future without him. We had mastered our world together and that is the absolute greatest loss I had come to accept.  Time, dear Alla, it takes time.
Our Dr. Giles wrote: "I would gently suggest to you that the depth of your feelings is a testament to the significance of the place your husband has in your life. The magnitude of your pain and devastation signifies how precious he was to you--and that's a good thing. Please do not hurry through this extremely tender time. Your sorrow is a result of the loss of a good man."
Please know that our Dr. Giles is here for you also – he is here for everyone on this site.  You can find him: http://www.cholangiocarcinoma.org/ask.htm
Hugs and love,
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: Roanoke, VA
  • Registered: Fri, 05 Oct 2012
  • Posts: 90

Re: New member

Thank you, ladies. I appreciate your advice and words of wisdom. Just found out that someone else in my youngest son's school was discharged with hospice after 2 years of battling cancer and she has 2 sons in 2nd and 4th grade... So I'm guessing she is really young. Tried to reach her husband, but he didn't return my call yet. Not sure if I should call more or not. I have some sealed protein drinks and was going to offer those to them. I'll probably call one more time...