GCT Connect

Giant Cell Tumor Network

The Giant Cell Tumor Network is a place for people who have or know someone who has giant cell tumors to connect and share information.

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Welcome to GCT Connect!

Hey, guys. Just wanted to post a notice here that we get an awful lot of membership requests that are spam. I do my best to weed these out, but if you're ever sent spam by someone on this site or you see it posted in any of the comments, please feel free to let me know. Also, if you are requesting membership, please be patient with me when it comes to approving your membership request, as I am a full time student and a full time stay at home mom. Thanks!

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Forum

Sad news... 29 Replies

Started by Ian MacGregor. Last reply by Roxana 9 hours ago.

Biopsy

Started by Laura Parsons yesterday.

Xgeva not working

Started by Jacinta Elm yesterday.

Blog Posts

FULL SACRECTOMY ON THE 24th FOR MY THIRD GCT

i am so fucking scared!! excuse my language!
next week i will be having my whole sacrum removed!!!!

Posted by Amylouise Livesey on September 15, 2014 at 3:29pm — 6 Comments

Good News- 18 month update

When I was getting surgery I used to desperately trawl this website for good news updates. For fitness advice. But it seemed that people who get over also don't return to the site.

I'm not over it. 

But just to recap. I used to dance. I started dancing at the age of 25 and it was my way to instantly be happy. I would dance if hell-fire was raining down on me or if there were knives under my feet. It was my respite from the trials and tribulations of the world. I didn't want to…

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Posted by Cassia Valazquez on September 12, 2014 at 4:00pm — 3 Comments

Fight against GCT

 

My mother, Minda was recently diagnose of having giant cell tumor in her spine specifically located at L5 vertebra. It started last March, she was walking in the house doing chores when she suddenly felt pain in her left legs. She thought its just originally pain. Come May and the pain is still there. She felt a bit relieved when taking some pain meds but it was getting worst. I asked her to seek medical help. We went to ortho and initial diagnose was degenerative disc disease. All…

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Posted by Leah Lacdao on August 26, 2014 at 8:09pm — 2 Comments

Surgery #4, 9 month checkup

Well I can log three more months tumor free into the record book. Had my checkup today and all was clear. They only did X-rays this time, leg and lungs. All looked good. The doctor said there were no changes between this X-ray and the last ones.

The leg is still sore on and off. I am back to running a bit, I can make about 2-3 miles now. The leg will be sore the next day, so I am not running very often. I am back to riding the bike though.

Went China back in May, what an…

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Posted by John N. Montgomery on July 23, 2014 at 9:47pm — 1 Comment

The Accidental Journey - First Post: "The Collar"

5:30 a.m. I open my eyes. Morning light creeps through the blinds; I can hear the sound of traffic, and of birds singing. I shift in the bed… and then I remember what has happened. My collar reminds me...

Read more HERE

Posted by Anne Lower on July 10, 2014 at 1:45pm

Latest Activity

Brittany Holcomb is now friends with amy munoz and Kristi Cauvin
2 hours ago
Laura Parsons posted a discussion

Biopsy

Hi everyone. Im having a hard time because I feel like no doctors can give me any true answers. I had a cyst on my foot, they did an X-ray and found "something" with my tibia. I went to a dr he says it's a giant cell tumor, orders a CT scan and sends me to another Dr. The CT scan comes back with a dx. Of GCT and sends me to another Dr. Who gets me into a great GCT Dr. Sooo then I go to this GCT Dr. And he says my lesion is an "it" says he can't say for sure what it is and schedules a biopsy.…See More
yesterday
Tyler Dinh is now a member of GCT Connect
yesterday
lou maccorquodale and Amylouise Livesey are now friends
yesterday
Jacinta Elm posted discussions
yesterday
Christina Harkness added a discussion to the group GCT of the sacrum
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Questions regarding Radical Resection of Sacrum

Hello all, I am writing this to help my Son Jeff Kelley and hoping that some of your experiences with a radical resection of sacrum due to GCT (tennis ball size). We are looking like if no changes we would have to go in March/April 2015 timeframe to have this procedure done. We don't know what to expect and that is part of the scariest part for Jeff. We know the risks, but the process is the confusing part. We know it will be a big surgery…See More
Tuesday
Amylouise Livesey posted a blog post

FULL SACRECTOMY ON THE 24th FOR MY THIRD GCT

i am so fucking scared!! excuse my language!next week i will be having my whole sacrum removed!!!!See More
Monday
isa is now a member of GCT Connect
Monday
 
 
 

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