We have a few patients in our group that have strong connections with carcinoid in their family. A new study at NIH has opened and we strongly encourage those affected to look into this. I have cut and paste an email that we received from Jenny Pettit about this study:
Myself and my Aunt (deceased) have been diagnosed with Familial Midgut Carcinoid/NETS.
As I feel it is curse (due to that my children may have a 50% chance of inheriting this) yet a blessing at the same time.
This study has opened up a new world of opportunities to myself and family members in order to partake in the Natural History of Familial Carcinoid Tumor Study at the National Institutes of Health in Bethesda, Maryland.
The NIH is the Research Facility for Our Nation and has helped and assisted in my continuous care.
The purpose of this study, is to locate and identify the defected mutated genes in family members.
As this is a well established 2008 study, it also gives the generous gift of Free Of Charge sensitive scans to us who are the rare OF the rare.
Should mid gut carcinoid tumors be found every participant will be assisted in determine what the best course of treatment will be for them. I myself accepted the surgery offer and it has lengthened my own life.
As a clinical trial patient, you are “in the drivers seat”, and can refuse anything or back out of the trial at any time. I attend for my own selfish reasons: To stay as healthy as I can, to advance science in order to assure that my children will have better treatments if they are to inherit my cancer, and for the Carcinoid Community.
The NIH has the famous 18-FDOPA CT/PET scan, capsule endoscopy camera pill, to name a few.
Criteria: 2-BLOOD RELATIVES WITH A CONFIRMED DIAGNOSIS OF TUMOR THROUGH A PATHOLOGY REPORT OR DEATH CERTIFICATE stating so may be considered. Example: Myself & Aunt.
(Symptoms alone will not qualify. MUST have the Path. Reports.)
Please contact Nurse Practitioner, Joanne Forbes at 301-443-9557 as she assists Dr. Stephen Wank Chief Investigator.
This is a Worldwide invitation to the zebras that fit in this box.
As I understand, only 6% of the Carcinoid Community will have this proof in the family line. This is why I take an active part in trying my best to locate these rare zebras.
I appreciate your assistance in locating anyone who falls in this category, and to advocate throughout your own area.
I will allow my e-mail to be given to all that fit this profile in order to speak patient to patient for support questions if desired.
Enclosed is the trial link. Please read thoroughly.
And again, 2-blood family members who hold this PROVEN DX of carcinoid cancer through a pathology report shall qualify.
Let’s help get these genes discovered!
Through the proof of the few that Qualify.
Familial Midgut 2010