• Registered: Sat, 31 Jul 2010
  • Posts: 98

Re: question about metastatic cc

the new year has started with terrible news. my sister met with drs and they told her the cholangiocarcinoma is metastatic. the tumors found on her ovary and her liver is cc. it is heartbreaking. she is only 47 yrs old. they told her the only option is chemo. i havent gotten the full information from her yet because she is so upset but she said they told her they are going to do a short term chemo followed by some kind of pill that is very strong and will have numerous side effects. they give no guarantee of anything. i am praying for a miracle. i dont know if anyone here can give me some added insight to this treatment, or suggestions or hope. i dont know what to do or where to turn. it is frightening.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,216

Re: question about metastatic cc

Dear Sally, I am so very sorry to hear this. I am sure that frightening is putting it mildly. I am trying to think if we have had this this type of met before, to the ovaries, perhaps someone can help us out there. Did you go to Sloan Kettering? I am definitely thinking second opinion if she didn't. Guess I would want to know more about this 'pill'. I know chemo is a scary thought again but many here have chemo after surgery and it has worked. Gather your strength and your thoughts for your Sister and we certainly hope for the best. Please let us know how she is doing.

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: 8,169

Re: question about metastatic cc

oh Sally...I am so sorry – this is not the kind of news any of us wanted to hear.
When things have settled just a bit will you be able to share with us the exact treatments your sister will be receiving?  Xeloda comes in pill form. 
Side effects may not be as much of a problem for your sister as she might fear because; medications are available to easy the symptoms of side effects and some people experience negligent discomfort. 
My heart is with you and your family but please do not give up on hope for a positive response to the proposed treatment. 
Hang in there and please stay in touch.
Hugs and all my best wishes,
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
  • Registered: Sat, 31 Jul 2010
  • Posts: 98

Re: question about metastatic cc

i have some more information about the treatment plan for my sister and i hoping to get some advice from the friends i have here. the oncologist at university of penn spoke of three different chemo protocols. xeloda, gemzar and 5fu plus oxiliplatin. my sister was given 5fu with the radiation treatments she received after her first surgery. that was followed by six months of gemzar. the oncologist believes the best course of action right now would be to give her a stronger dose of gemzar. he said he is basing that on the length of time it took for a recurrence to appear. it was a little over a year. he feels a stronger dose could keep it on hold longer. my sister also spoke to someone who felt a combination of xeloda and gemzar may be effective. we dont have much infor on the 5fu/oxi chemo. i would really like some advice. on monday we are contacting sloane to let them look at her reports and give advice. also was wondering if anyone has ever heard of a drug called naltrexone. i was reading about it and it suppossedly has become an effective cancer fighter but i always question the legitimacy of drugs i havent even heard of before. thank you to everyone for your support, prayers and advice. we really appreciate it.

  • Registered: Fri, 12 May 2006
  • Posts: 8,169

Re: question about metastatic cc

sally....naltrexone appears to be an opinoid inhibitor and as far as I know has not been used in the treatment for this cancer.  You might want to discuss this with the oncologist.
Who are you contacting at Sloan?
All my best wishes,
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
  • Registered: Sat, 31 Jul 2010
  • Posts: 98

Re: question about metastatic cc

the name of the dr at sloane is dr ronald dematteo.

  • Registered: Fri, 12 May 2006
  • Posts: 8,169

Re: question about metastatic cc

Great.  Have your questions handy and be ready to take notes. 
Good luck and all my best wishes,
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: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 407

Re: question about metastatic cc

I had a resection in Sept. 2010 and they removed over 75 percent of my liver. The recovery was slow but manageable. The surgeon was unable to get clean margins since it was so close to a main vessel. I had six months of chemo and then the cancer came back in the liver but they were able to get clean margins during this surgery. I think it is fantastic news that you got clean margins......with chemo this could be a cure...yipppeeee

Everyday is a gift

lisacraine's Website

  • Registered: Sat, 31 Jul 2010
  • Posts: 98

Re: question about metastatic cc

had appointment with oncologist at university of penn yesterday. he said her cancer is metastatic and he doesnt believe doing chemo will help.  he said the side effects for the chemo will be bad and said it is up to us if we want to start it. my sister had her second surgery in december and he said that is rare because they usually dont operate when the cancer is spreading. she had 5 tumors removed. his theory now is to wait until tumors return and than they will treat that. but he made it sound hopeless.

  • Lainy
  • Lainy
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  • Registered: Fri, 13 Jan 2006
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Re: question about metastatic cc

Dearest Sally, I am so very sorry. You do know you have the option of another opinion. Does your Sister want to look in to any other options? I am wondering how he will keep treating returning tumors if the chemo is not helping? With faith and trust in the Doctors a decision will be made and all you can do is take it from there.
You never know how strong you are until "strong" is the only choice you have!

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: Sat, 31 Jul 2010
  • Posts: 98

Re: question about metastatic cc

we really dont know what to do. it was such a shock when the oncologist told us he didnt think chemo would help. he offered to give her xeloda and oxiliplatin if she wanted to try chemo but he said the side effects would be severe and may not be worth dealing with for such a small chance of benefit. i feel we have no choice but to get other opinions. at the same time we dont want her to suffer for no benefit. it is a very difficult time. i dont know how she deals with the stress as well as she does. we are just praying for a miracle.

  • Registered: Mon, 27 Jun 2011
  • Posts: 435

Re: question about metastatic cc

Sally,

Your sister sure has been through so much.  My thoughts on chemo are, you can always try it and see.  Everyone is different.  Maybe the side effects won't be so bad.  If they are you can always stop treatment.  But I agree there is no need to suffer if there is no benefit. It's a tough decision. Keep us posted on what the decision is.  She is lucky to have you.  I am 32, my sister is 34 and she is very supportive and involved in my treatment decisions.  I don't know what I would do without her.

Best wishes,

Susie

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: question about metastatic cc

Dear Sally,

I am praying the doctors come up with a plan that will help your dear sister.
If that means getting another opinion, then keep trying until you find a doctor that is able to help her. All the best to you and your sis.

Love, -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