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.
