Denosumab!

[ilana]

Hi Guys,
I hope that everyone is doing well and enjoying the fresh smells and sounds of spring.

I rarely post, but here's the long and short of my story:
I was diagnosed with a GCT of the sacrum in mid July. After 2 embolizations I had a resection. Unfortunately, 2 months later the tumor recurred and metastasized to my lungs. I tried the cyberknife, but that was ineffective as well.
I was then lucky enough to be accepted into denosumab trial. The drug has been nothing short of a miracle cure. I haven't had a MRI/CT yet, but the tumor has certainly shrunk and my energy and mobility have improved tenfold. I am a new person, and it's all thanks to Amgen and its new drug.

I had an appointment with my doctor on Tuesday in Philadelphia and was telling him about all of you nice people on this site. He informed me that he is currently looking for FOUR NEW PATIENTS who would like to try denosumab. He told me that he's only accepting wonderful people. (I'm sure he'd love ya'll!) So, anyway, if you want his information, let me know and I'll get you in touch with him. Either reply here or shoot me a personal email ([e-mail])

Best of Luck,
ilana

[Mary]

I would like to have the information about this doctor. Do you know how strict they are about having had your last biopsy in the past year and how long you need to be off other treatments such as Interferon? My last biopsy was early March 2008 and I am currently on Interferon but I would consider changing since the results are so promising. I am really happy you are having such amazing results!!

[ilana]

Hi Mary,
Although I had biopsy's well within the year, Dr. Staddon still wanted a recent one, so he had it done just before accepting me into the trial. I'm sure he'd do the same with you. He is limited by all of Amgen's rules for the trial. It's all still worth it. Here's his info. I'm sure he'll be happy to talk to you. Dr. Arthur Staddon, Pennsylvania Oncology Hematology Associates, 215-829-6104, email- [e-mail]. He's an absolutely wonderful person. If you can't reach him, his research nurse is Deb Reardon and she returns calls pretty quickly. Good luck and please keep me posted.

[Mary]

Hi Ilana,
Thanks for the info. I sent my Dr. at MD Anderson the published results about Denosumab and his nurse emailed me back saying that she spoke with the head of the Sarcoma Dept. and he was familiar with Denosumab and its promising results. Of course they are not 1 of the participating sites, although apparently they have tried to get the drug. I plan on contacting Dr. Staddon's office this week for more info. I am just so torn about what to do because I know that Interferon takes a long time to work and I have only been on it for about 4.5 months but I am worried that if I wait until my year of treatment is up that they may not still be accepting pts. into the trial. I also do not know how long you need to be off Interferon before you can be accepted into the trial. I have a lot of questions to ask Dr. Staddon or his nurse. Keep us updated on your progress.

[Pam]

Hi iLana! I'm thrilled to hear that Denosumab is working so well, this is very encouraging! Thanks for the update! Take care, Pam

[James]

That sounds great Ilana,
I to am in the trial and go this Tuesday, March 31st for my third injection, aka the loading dose. How long have you been on this trial? Personally I have not noticed any changes either in the pain or in my ability to breath, but I am hopeful. My turn is coming.
Personally I feel this drug is the "train to salvation" for people with GCT. I so want members of our group to search out and get into this trial while it is still available, enrollment is limited. With a success rate of 87%, and compared to other options, gettin into the Denosumab trial is a no brainer

[Heather]

Hi, James! I hope you're doing well. I'm anxious about the trial. I haven't opted in since my lung tumors aren't growing, but I'm also scared that they might start to grow and then it will be too late. You know? Argh! I hate being in this position. What do you think? Have your doctors been able to tell you yet if there's been a difference in your tumors? Thanks, James!

[Kristen]

James: This is Kristen, Blake's Mom. We just came home from Washington about two hours ago. We missed you again!!! Good luck....your turn is coming...we are praying!!!!!

[James]

I head up tomorrow in the AM. So far I'm feeling pretty good. My knee dosen't hurt near as much as it did two weeks ago. My next app. is on the 14th next month at noon.