Tuesday, September 22, 2009

From: Handcam1@aol.com
Subject: osteogenic sarcoma info

I am contacting you at the suggestion of Bill Suidmack ( Rotarian ). My inquiry has to do with my 13-yr old daughter. She was diagnosed with osteosarcoma of her left femur in Jan of 08. She has been through numerous rounds of chemo, leg salvaging surgery and an eventual amputation. Over the last 20 plus months she has also had several bacterial infections and intestinal adhesions, some of which have required surgery....most recently the doctors found many small lung tumors and has given her basically no chance at surviving the reoccurrence. She was being treated locally at Hackensack University Medical Center, but we recently visited MD Anderson Cancer center in Houston and they put her on a different chemo protocol that has had some success with one or two patients in her situation. Do you have any advice or information that may help us as we continue to seek treatment for our daughter.

My Response to the situation:
Watch this video on a new treatment:

I just downloaded a bout 200 pages of info to read including some good "stuff" on Rexin-G" a new nanotech gene therapy program that has been give "fast track" clearance for Osteosarcoma under the Office of Orphan Drug Development. I've had my eyes on this new product for sometime. I'll have dtails shortly, but I need to read a bunch. I don't have Bill Suidmack's e-mail so please include him with a copy so he's in the loop and knows I have followed up.

Has anyone mentioned using proton Beam therapy to you?

What chemo regiman are they using?

Have they tried any immunotherapy ideas yet?

Have they mentioned stem cell or cord blood treatment, even in passing?

I am on top of this and have located about 20 clinical trials for osteosarcoma. I need to read potential results to come upi with some suggections. meanwhile I'll contact Dr. Gordon on the rexin-G program. we have talked in the past so getting a hold of her should be realatively easy. More shortly...

RTN. Ed Mattson PHF (Cell: 630.440.7912)

Member, Romanian Association of Preventive Oncology
Board Chair, Rotarian Cancer Support Group
Member, Rotary Club of Mishawaka, IN - District 6540
Co-Chair, Rotarian Annual International Project Symposium and Workshop
National Membership Chair, Disaster Relief Rotarian Action Group-DRRAG