So the thought is being tossed around about getting a 2nd on the disease diagnosis and the treatment. Not that Dr. Luthra is not capable but that this is very important and we need to know that we are getting the best possible. This disease is so rare, so the more information, the better! After making many calls to doctors who have treated ECD I have pretty much narrowed the list down to either MD Anderson in Houston or Dr. Arceci at Johns Hopkins both as it sounds have treated around 20 patients (according to their offices) with ECD, which is far more then anyone else that I have found anyway, and in speaking to other doctors these two names were continually brought up.
We have not committed to either as of yet. I still need to check on insurance etc. If anyone has any other suggestions on doctors please feel free to post a comment. What I have been basically looking for is how many patients they have treated, their name, phone number, location, misc past treatment info.
Warm days ahead!
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Be of good courage, and He shall strengthen your heart, all you who hope in the LORD. Psalm 31:24 This a blog for Erdheim Chester Disease patients, friends, and family's. It's purpose is to provide a forum for ECD patients to come together to share information with friends, family, & other ECD patients. This blog allows one author per patient. Contact blog admin Doug M to become an author on this blog.
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- Doug M
- Wonderful Wife, 3 great step children. Diag following 10 years of mis diag or none, Nov 07' ECD.
2 comments:
Doug,
Just read your blog and wanted to share some info with you. I was diagnosed 3 years ago (age 34) with ECD. Took only 2 frustrating years to get my diagnosis correct. My symptoms: Diabetes insipidus, sclerosis of long bones, retroperitoneal fibrosis around; adrenal,kidney,ureters, bilateral retro-orbital masses with mild protrusions. Lots of doctors with no answers, until I saw Dr. Arceci. I was in a somwhat similar situation as you, but I was a new father when I was diagnosed. At the time of my diagnosis, all the published medical literature pointed to an early demise. By the time I reached him, I was severly depressed about not being able to watch my son grow up. I spent 1 hr with Dr. Arceci and left with something no other physician had been able to give me: answers & hope. Dr. Arceci is a rare find among physicians. He is caring, compassionate, and educated about this disease far beyond most doctors. He told me "I have no crystal ball, but we hope to be treating you until your an old man." I can't tell you how many times during our meeting he would notice a change in my facial expression in response to the information he was providing. He seemed to have an ability to detect, and then provide an answer to my questions before I had even asked. He outlined possible treatments that have been tried, and then outlined some additional treatments that he thought might work based on the drugs mechanism of action. I was stunned. Not only was he familiar with current treatment options, but he had actually researched other possible alternatives that haven't been tried yet. He tried me on a few cycles of dexamethasone with no improvement and then switched me to Intron A. I have been on Intron A for about 2.5 years and have stable disease. I work with a local oncologist under direction of Dr. Arceci and get scanned every 6 months. I work full-time, ocassionally become fatigued, but am enjoying every minute of life with my son and fully expect to see him grow into a man. I also see an endocrinologist every 6 months. I really can't say enough good things about Dr. Arceci and his staff. I work in the pharmaceutical industry and have interacted with 1000's of physicians across this country and have yet to come across one like Dr. Arceci. Just to illustrate, I will recount 1 last example that truly shows the dedication of this doctor. After I left the office, he gave me his e-mail and told me to contact him with any questions. Now, having a thorough understanding that Johns Hopkins was one of the best and busiest institutions in the world, and Dr. Arceci is an extremely busy man, dealing with seriously ill pediatric patients, I didn't really expect him to be readily available to answer routine questions. However, during my initial treatment, I had a question about side effects. I thought, why not e-mail him and see if he will respond. I received an answer 6 hours later at 11:00pm, with his apologies for not getting back to me sooner as he was in LA at a convention and hadn't had a chance to check his e-mail. Whenever I think of this interaction I am amazed...my primary care doctor can take days to get back to me when there is a serious situation, but a distinguished pediatric oncologist at JHU somehow finds the time to reply to me within 6hrs, even when he is travelling. I hope this information helps with your decision.
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