14th July 2005
Amy,
Sorry that so many are jumping in on your post that have nothing to do with FD.
People - please start you're own post if you want answers.
Anyway - the description of the xrays are similar to mine - the soap bubbles as you stated are the cysts - they call them cystic lesions in most radiology reports. Did you happen to get the radiology report - it would be informative as to their take on the progression of her disease. I can tell you that now that my Hashi's is more under control (went undiagnosed for 6 years until May 2004); I am having less pain in my bones with known tumors.
Shriners is a GREAT place to go and if she can get back in there, they should be able to work with you. I also participated in a FD study at NIH in Bethesda, Maryland - they will often times perform any surgeries there after the initial evaluation. I would try to look into the FD clinical trials there as well as see if any are being done elsewhere. Not sure how far Maryland is for you. There are some new drugs that are being tried (mostly bisphosphonates) - I did a year's worth of Aredia infusions, but it did not help me (but remember I don't actually have FD as originally thought). Also - I know several folks who take a form of this drug called Fosamax. They are seeing some halting of the tumor growth by using some of these drugs. A clinical trail would be wonderful though if she can manage to get in one.
Please continue to post (or have her post) with updates and questions. Let her know that there is support online for her!!!
Sorry that so many are jumping in on your post that have nothing to do with FD.
People - please start you're own post if you want answers.
Anyway - the description of the xrays are similar to mine - the soap bubbles as you stated are the cysts - they call them cystic lesions in most radiology reports. Did you happen to get the radiology report - it would be informative as to their take on the progression of her disease. I can tell you that now that my Hashi's is more under control (went undiagnosed for 6 years until May 2004); I am having less pain in my bones with known tumors.
Shriners is a GREAT place to go and if she can get back in there, they should be able to work with you. I also participated in a FD study at NIH in Bethesda, Maryland - they will often times perform any surgeries there after the initial evaluation. I would try to look into the FD clinical trials there as well as see if any are being done elsewhere. Not sure how far Maryland is for you. There are some new drugs that are being tried (mostly bisphosphonates) - I did a year's worth of Aredia infusions, but it did not help me (but remember I don't actually have FD as originally thought). Also - I know several folks who take a form of this drug called Fosamax. They are seeing some halting of the tumor growth by using some of these drugs. A clinical trail would be wonderful though if she can manage to get in one.
Please continue to post (or have her post) with updates and questions. Let her know that there is support online for her!!!