Cystic Fibrous Dysplasia

[jot255]

I am 47, and have an osteoblastoma in my femur. It is large, covering 60% of the bone right in the neck.

I have found some very frightening information, due to it's size, is ther anyone with any info, or experiance? I go in for surgery in four days and am frightened.

[hrtofluv]

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!!!

[hrtofluv]

duplicate post - sorry

[stine]

Amy
I sincerely apologize for "jumping" on your board and posting unrelated issues. I had no idea that it would offend some people. I truly hope that it did not offend you. Best of luck to you and the problems that you are dealing with.

hrtofluv
Last week YOU posted on the tonsillectomy board and said that if anyone had any questions about TONSILLECTOMIES that we could find you at "the bone board." I had no idea that this would be a problem, as you were the one that suggested it, and I never would have done it otherwise.

Sorry for any inconvenience (Amy.)
Christine

[hrtofluv]

Christine - I didn't mend to offend you either. Just post a new message to me and I will answer any questions you may have. I just should have stated it better in the post - tonsillectomy post.
I have started a new post to you under general health for your answers.
Hrtofluv