Topic: Bile duct cancer in person with Down syndrome

My 49 year old brother was diagnosed last year with bile duct cancer. He had a metallic stent placed in his bile duct. His jaundice and itching were relieved with the stent placement.

He has Down syndrome and because he was feeling better, he thought he was cured. We have never used the cancer word with him. He has been through several family members dying of cancer and it scares him.

Now his jaundice and itching are back. I assume the stent is no longer functioning. He can barely tolerate getting blood drawn without being sedated.

I am wondering if anyone else has taken care of someone with Down syndrome and bile duct cancer and if they have any specific recommendations for how to help.

Thank you.

2 (edited by Bazel Tue, 20 Oct 2009 17:47:02)

Re: Bile duct cancer in person with Down syndrome

Martie,

I have not cared for someone with Down's Syndrome and bile duct cancer but I am thinking that you may also want to post a similar type question in a broader forum - maybe the American Cancer Society (and for that matter a Down's Syndrome forum??) has a forum board?? I think techniques would like cross "types" of cancer and focus on care tips there.

Sorry I can't offer more help.

Bz

Re: Bile duct cancer in person with Down syndrome

Martie...Julie Goss had Down Syndrom.  Her sister (I can't remember her name) had posted about some difficulties regarding anxiety and treatment problems.  It is possible that you may receive a response from her if she is still logging in to our site.  I will also try my hardest to find her discussions and with that hopefully, her e-mail address. 

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

4 (edited by tiapatty Tue, 20 Oct 2009 21:37:56)

Re: Bile duct cancer in person with Down syndrome

I, too, remember Julie's sister posting and was able to find an old post, her name is Belle, here is her profile:

http://www.cholangiocarcinoma.org/punbb … hp?id=2135

You can get her posts from here and also send her an e-mail.

Patty

Re: Bile duct cancer in person with Down syndrome

Thanks Patty....I just found it, also.  These librarians are always one step ahead.  Thanks so much.
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

Re: Bile duct cancer in person with Down syndrome

Thanks everyone. I'll check on all these good ideas.
Martie