4th April 2005
Clair,
Hi! Sorry been away from the boards for awhile.
I went through the clinical trial for PFD at NIH. The doctor's name is Michael Collins and he is the most wonderful physician I have ever met. I ultimately did not have PFD, but another more rare bone tumor disease. They have done several clinical trials at NIH and are the most knowledgeable about the tumors and what treatments have worked.
One of things I have tried based on Dr. Collins advice is Aredia (bisphosphonate) infusions. VERY painful and although he has seen much success with it (less pain and tumor growth halted), I had no success.
Look in the archives on the board for mine and other's journeys with FD.
Wishing you all the best!
hrtofluv
Hi! Sorry been away from the boards for awhile.
I went through the clinical trial for PFD at NIH. The doctor's name is Michael Collins and he is the most wonderful physician I have ever met. I ultimately did not have PFD, but another more rare bone tumor disease. They have done several clinical trials at NIH and are the most knowledgeable about the tumors and what treatments have worked.
One of things I have tried based on Dr. Collins advice is Aredia (bisphosphonate) infusions. VERY painful and although he has seen much success with it (less pain and tumor growth halted), I had no success.
Look in the archives on the board for mine and other's journeys with FD.
Wishing you all the best!
hrtofluv