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ilana Female Washington, DC United States: Share

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Denosumab!
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Started this discussion. Last reply by James Mar 31.

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Denosumab!

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 resectio...

March 27

Lauren and ilana are now friends

March 19

ilana and Diane Stern are now friends

March 9

ilana and minn are now friends

March 8

Profile Information

About Me:

i am a 21 year old female who was diagnosed with a GCT on the fourth of July, 2008. i am currently residing with my parents in NJ but have a life, an apartment, and a job at a civil rights not for profit down in Washington DC. my tumor's name is bertha. while i tend to be sarcastic but generally of a sunny disposition, bertha is a real bitch. anyway, i love hockey more than i hate bertha (and that says a lot) and i am a die hard rangers fan. i'm pretty bummed about everything i've been going through because i have a hard time burdening my friends with my illness, so if you are bummed too and want to chat, hit me up.

How do GCTs affect you?

GCT patient

Location of primary tumor:

sacrum

Date of diagnosis of primary tumor:

july, 2008

Treatment of primary tumor:

i have been treated with embolizations (aug. and sept. 08) reconstructive surgery (sept.08)

Facility treated at for primary tumor:

Sinai Hospital

Would you recommend this facility and it's Doctors to another GCT patient?

Yes

Recurrence? If so, where?

Yes, in the sacrum

Date of recurrence:

nov.08

Treatment of recurrence:

after my recurrence i was treated with cyberknife radiation(nov.08), and am beginning a denosomab trial on dec.20 (the day of president obama's inauguration!!!)

Facility treated at for recurrence:

cyberknife at Sinai and denosomab at UPenn

Would you recommend this facility and it's Doctors to other GCT patients?

yes

Metastasis? If so, where?

Tumor free?

Current GCT Status:

viabale and painful

Website:

http://www.facebook.com/home.php#/profile.php?id=7406873&ref=pr...

Comment Wall (6 comments)

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At 1:36pm on July 8, 2009, Quinton said…: You are so correct! I've been taking denosumab since November, 2008 and it has done miraculous things. I'm stable now after a significant reduction in size and pain. I'm so glad you're in the trial, too!

At 11:54am on June 23, 2009, Mary said…: Hi Ilana, I talked with your mom about Dr. Staddon. He sounds great. I have an appointment with him this week concerning getting in the Denosumab trial. I hope things are still going well for you. Take care!

At 5:50pm on May 5, 2009, Lauren said…: HEY!! I might take you up on that when I get a chance to get out that way!! We can party in honor of killing our tumors! Maybe Bertha and Herbert are living in a little house together in hell!!! Post surgery was pretty cool iwth the pain until about 2 1/2 weeks ago when it started slowly creeping back up on me, don't know what that nonsense is all about!!

Whoa! What's this denosomab you speak of?? haha I've never heard of that!! IS it working so far?? How's everythign going for you??

Happy Cinco De Mayo by the way haha
Lauren

At 10:31am on April 3, 2009, Lauren said…: Hey Ilana! how is everything going for you? I just had my surgery and am hoping sooooo badly it doesn't come back... Herbert was a real bitch too but if he comes back I am going to freak out and try as hard as I can to murder him again!!!

At 8:12am on March 13, 2009, Adam said…: Hi Ilana, how is the Denosomab working for you? Hope all is well.

At 7:38pm on January 16, 2009, Kara said…: Hi Ilana - I also live in Washington, DC, am from NJ and am trying to kill off my GCT on my sacrum. I'm working for a non-profit in the DC suburbs and being treated at Johns Hopkins. If you're ever in the area/or want to chat, let me know.