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Neuroendocrine cancer

Kawood
Posts: 4
Joined: Mar 2006

My husband was diagnosed with neuroendocrine pancreatic cancer on Dec. 1st. An attempted whipple took place but was not successful. He is undergoing chemo therapy now. Has anyone had luck with treatment for this type of cancer?

Waving
Posts: 43
Joined: Sep 2004

Hi Kawood - I suggest also trying this Johns Hopkins forum
http://pathology.jhu.edu/n.web?EP=N&FL=PANCREAS_CHAT and you could also search www.cancergen.com/pancreatic for links to other useful websites

roxanne53's picture
roxanne53
Posts: 157
Joined: Feb 2004

Hello~
I would also suggest the Johns hopkins forum.
Also there is: PANCAN.org that also keeps up with the pancreatic cancer stuff and will help with answers to questions if they can.
best wishes to you
roxanne53

Kawood
Posts: 4
Joined: Mar 2006

We are planning to attend the PANCAN Symposium in Chicago, April 7th & 8th. Thank-you for the suggestions!

roxanne53's picture
roxanne53
Posts: 157
Joined: Feb 2004

That sounds great.
Let us know how the PANCAN Symposium goes.
roxanne53

Kawood
Posts: 4
Joined: Mar 2006

I am glad you told me about the John Hopkins forum, Thanks for the help!

isletcell's picture
isletcell
Posts: 70
Joined: Mar 2004

Please visit the carcinoid cancer foundations web site and see a specialist!! This cancer needs to be treated very diferently.

carcinoidlady
Posts: 5
Joined: Jul 2007

Islet cell is one of the cancers covered for the 2007 North American Carcinoid Neuroendocrine Conference for Patients and Physicians in Norfolk, Virginia this September 2007.

It is a 2 and a half day meeting with the United States specialists and those in Canada, the Netherlands, Sweden, and Switzerland.

The full schedule is on the conference web site www.carcinoidnetconference.org

A full list of speakers is on the site as well. Conference registration and hotel registration is available directly on the conference web site.

I know I was best served by attending one of these annual events shortly after I was diagnosed in 2003.

George1980
Posts: 1
Joined: Oct 2010

Don't be discouraged, this cancer is treatable, but there to my knowledge is one doctor in the US that specializes in it. Do yourself a favor and keep the reading to a minimum, my niece had neuroendocrine cancer which also started in the pancreas, she had a terrible doctor that had to much pride to reach out to the medical community. Her mother told him numeorus times that there was a doctor, I can't remember if he was in Iowa or Idaho, he knows a great deal about this type of cancer and found a treatment that was making progress with my niece.
It was through the grace of god that she started getting the right treatment, she suffered a lot because her doctor put her through chemo treatments that are used for other types of cancer, but do not work on NeC. Look up Angela Visone Mudd on facebook (located in KY), she can direct you to this wonderful doctor. Also if blood thinners become a necessary part of treatment !!!BE VERY CAREFUL!!! The day we found out my niece's caner was finally regressing, about a month after the proper treatment was started, she fell and struck her head on a floor; the blood thinners resulted in 2 massive strokes in the brain stem, though her bravery and courage was a testament for us all, this unfortunate accident took her life.
The cancer is very treatable, just new in the medical world, so not a lot is known about it. Evrything I read was negative, which is precisely why I say do not read about it, there's a lot negative posted on the internet. Angie will be able to effectively direct you to specialists, and more specifically some more inspiring websites to contact people who are going through this same battle. Best of luck, and when and if you have the time please see my facebook page as well I'm George Mudd located in Huntsville, AL; if you look under my likes you'll find the SHannon Alert Cause, a great cause named after my niece that might have saved her life if we knew then what we know now about blood thinners.

mr steve
Posts: 286
Joined: Sep 2009

George,

My wife has been getting treatments at OSU and has made great strides towards what we hope is remission.

Steve

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