H.E.A.R.D. Registry - Email Communications "One is the active list & one is the...well you know, those who are no longer reporting" - Gary Ditfurth
The following are three email communications between myself and Gary Ditfurth, H.E.A.R.D. registry coordinator.
Mon 7-26:
My name is Gary Ditfurth & I am working with HEARD & I will be working with you & providing you with some information. The actual registry is run out of Australia, but I am helping on some of the communications. I am also part of the registry, as I have been an EHE patient since 1999. I joined the registry about 2 years ago. The whole concept of the registry is to provide our individual experiences & treatments (if any) & update as we obtain treatment.
I will tell you that keeping the registry current is our best way of gaining more knowledge. I know from my personal experience that being part of the registry has been the most important action I have taken related to my condition. As you have probably been told EHE is a very rare cancer, so by keeping our files updated we are able to share our experiences globally.
Below is a sample of the registry & it will give you a basic feel for what it entails. It sounds like you are in the very early stages of working with you medical professionals. To be part of the registry I will need to know the basics of what you know now. At this time just tell me what you know, the location, symptoms, age, doctor, etc. The sample listing will help.
I have noticed your phone number is a 562 number, so we are fairly close. I live in Upland & work in Orange. If you would like you are more than welcome to give me a call. My work number is probably the best during the day. I am in and out at times.
One last comment about the registry & I need to know how much you want to see? We have two parts. One is the active list & one is the non-active list, which includes individuals no longer reporting or are no longer with us.
I don’t want to scare you with too much info.....please tell me what you know, where were you treated so far, any symptoms, your age, your location, etc. The type of info we list is like this:
43 year old female Lives in Pueblo, Colo Transplant doctor is Dr. Igle kam. My liver dr. is Dr. Trotter. Oncologist is Dr. Settipani. Diag 06/03 Aged 37Updated Jan 2009
EHE in liver 06/2003 - They found my cancer brcause i had pain in my stomach and they took out my gallbladder. I was put on interferon for 6 weeks, my liver was completely full of nodules. Then I had a transplant and I was in hospital for a year after my transplant.
I had my transplant in Denver, Colo at University Hospital. July 2008 - I am doing fine from the transplant all my blood work came back fine. I will have my five year anniversary July 15th Jan 2009 - I am still doing well, I am going on 6 years with my new liver. So far my EHE has not returned
-OR-
35 year old female Lives in King William, VA Treated at the Medical College of Virginia Diag 6/2007 Aged 35 Updated June 2008
EHE in liver
June 2007 – I am an ultrasound technologost and during a routine day adjusting the image on a machine was scanning myself and saw several lesions that did not appear benign. Blood work came back normal, so I felt not much to worry about and we had only seen about four lesions on ultrasound. July 2007 - MRI revealed 11 lesions total in the right and left lobe Aug 2007 -Liver biopsy pathology at MCV- unknown, so sent it to AFIP in Washington, daignosed as HEH. Saw hepatologist Dr. Todd Stravitz MCV recommended more lab work, suggested consult with transplant surgeon Sept 2007 - saw an oncologist Dr. David Trent Virginia Cancer Inst. Recommened wait and see. Had CT of chest, abd and pelvis, no other lesions. as well as a bone scan that showed normal. Nov 2007 - Saw Dr. Robert Fisher at MCV recommend treatment, then Nexevar. Liver oncologist Dr. Ray Lee MCV wants to try Nexevar June 2008 - An MRi showed no change at which time I had seen a liver oncologist who had wanted me to start on Nexavar but thanks to your registry I realized that too had been tried with little to no success. I went to MSK in April and saw Dr. Robert Maki who was great and agreed we should wait and see. He said at this time there is nothing proven to work. He had said if we saw 1-2 lesions that were growing would could consider Radio frequency ablation. I just had an MRI May 22 and it showed slight growth in 1-2 lesion as well as a new 6mm lesion. So my oncologist here wants another MRI in 3 months. So feeling great. Labs normal.
I realize you won't have too much info at the moment. All I ask is that you tell me your relevant info, and also that you try to keep the registry up-to-date. As you can see, it is the updates that make the registry so valuable. I look forward to hearing back from you.
Tues 7-27, I reply:
Thanks for your guidance with this registry. Here is the information that I have so far:
Name: Jona Vark Sex/Age: M/28 Location: Long Beach, CA Email: [email protected] Symptoms: Jaundice (mainly in the eyes).
Diagnosis report: Went in for jaundice on 6-24. Other than that, I have been asymptomatic, save a slight swelling in the upper abdomen. Took blood tests, US of abd., and then CT Abdomen with contrast. Reported multiple nodules in liver in both lobes, some up to 5cm, calcification. Suspected HCC. Had biopsy of liver on 7-10-09. Results from local hospital (Los Alamitos, CA) were inconclusive. Slides were sent to Stanford. Diagnosed as EH on 7-20-09. CT scan of chest was performed on 7-17-09 and multiple nodules in left and right lung suggest possible metastases. First appt with oncologist on Thursday 7-23-09. No doctor I encountered so far has heard of this condition. Further consultation with colleagues to assess best treatment plans.
Let me know if this is how I should correspond (too long, too short, only relevant info, more specific locations, etc…)
Thank you,
Wed 7-28, Gary Replies:
This is perfect. As you get more involved with your doctors you will be able to add to your profile. I will be able to set up your profile & send it to the individual that manages the registry.
As for your treating doctors. It is normal that no one has seen this before. Over the years I have been treated by at least 10 different doctors, including my current Dr. at the City of Hope & no one has dealt with this before. This is why the registry is so important. I have read a number of reports that you find on the Internet, but the registry is by far the most comprehensive & written by patients, so we can understand it.
Now before I send you the registry I still need to know how much information you want to see. As I stated before the registry is in two parts. Those that are active & those that are no longer reporting or are no longer with us. Some people do not what to see that.
Also is it OK to include your E-mail contact in the registry? I would not expect that you will get too many contacts, but we like to make that available, but your privacy is up to you.