The International H.E.A.R.D. Registry  

The H.E.A.R.D. Registry has already gained some recognision among specialists treating patients with hemangioendothilioma. Some doctors are using the registry as a reference guide, and some have referred patients to us. Some contact us for advice!


Members are encouraged to share information with others, and to keep their information up-to-date, so we can all benefit. The following information is recorded in the H.E.A.R.D. Registry for each member.


Name, email address, sex, age, city, treating doctor/s, treating hospital/s, as well as dates, durations, etc.


Below are some abridged samples of the medical history for a few members:


Case one: Hepatic EHE 


Dec 2004 - Diagnosis EHE in the liver and was recommended to undergo liver transplant.
Jan 2005 – liver transplant. The first two months were tough, but since then, everything has been a best case scenario. I regained my strength and energy (and weight) quite quickly.


July 2006 – EHE in new liver and some 20 or so small spheres (biggest 5 mm in diameter) detected in my lungs which is also believed to be EHE tumors.


Sept 2006 - Tumors are growing very slowly, if at all – so no treatment at the moment.. Feeling totally normal and strong in my body. I remain symptom free.


March 2009 - stable and fine


 


 


Case two: EHE in left arm.


Jan 2004 - Surgery followed by radiotherapy.


Aug 2005 - Since surgery, getting MRIs of left arm, and CT scans of the chest/abdomen every 6 months. So far, everything looks normal.


Sept 2006 - Doing fine.


May 2006 – All tests ok.


July 2007 – all ok


Nov 2008 - fine



 



Case three: Tumours in leg, then spread to lungs


Thalidomide for 8 months, did not work


Been on Taxol since Sept 2002 – was stable  


Sept 2003, regrowth. Has been taken off all meds, told its slow-growing & side effects of meds did not warrant the benefit


Feb 2005 – Latest scans - NO CHANGE from 6 months ago. Cutting back to scans once a year.


July 2005: - All is fine.


Nov 2005 – All is fine


Jan 2007 – new scans, all is fine.


Aug 2007 – all is fine


Sept 2008 - fine


Feb 2010 - fine


 


Please email [email protected] for more information.


 







HOME
WHAT IS H.E.A.R.D.?
AIMS OF H.E.A.R.D.
HEMANGIOENDOTHELIOMA (H.E.)
CLASSIFICATIONS OF H.E.
H.E.A.R.D. REGISTRY
CAUSES OF H.E.
PROGRESSION
TREATMENT OPTIONS
LIVING WITH H.E.
THE FUTURE...
DISCLAIMER
e-mail me