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

Low calcium

Started by Miriam 18 hours ago.

Metastisis to the lungs 3 Replies

Started by Jacinta Elm. Last reply by Lynn Lepper Oct 17.

Blog Posts

Hi everyone ,

It's been a long time since I wrote on my page .. I was busy with my newborn and feeling healthy and on shape since my last surgery in 2012 . I took denosumab for a year 6 months before 3rd surgery and 6 months after .

Today I went to do my routine test and my big surprise was there imagine I was like a horse running dancing playing with my kids suddenly my doctor inform me that tumour is back and 4th surgeries needed .

So what Denosumab did ?!!

I am waiting as my surgery will be… Continue

Posted by Ronza on October 20, 2014 at 8:30pm

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 — 4 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…

Continue

Posted by John N. Montgomery on July 23, 2014 at 9:47pm — 2 Comments

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

Miriam posted a discussion

Low calcium

I am currently on Xgeva for a GCT at the SI joint and lung mets. My calcium level is dropping and I am extremely tired. I was wondering if anyone else has experienced this? My doctor wants to take me off of XGeva for awhile, which makes me nervous. Thanks for any input!
18 hours ago
Ronza posted a blog post

Hi everyone ,

It's been a long time since I wrote on my page .. I was busy with my newborn and feeling healthy and on shape since my last surgery in 2012 . I took denosumab for a year 6 months before 3rd surgery and 6 months after .Today I went to do my routine test and my big surprise was there imagine I was like a horse running dancing playing with my kids suddenly my doctor inform me that tumour is back and 4th surgeries needed .So what Denosumab did ?!!I am waiting as my surgery will be done in a…See More
Tuesday
Anon is now a member of GCT Connect
Oct 9
Josephine Z updated their profile
Oct 6
John N. Montgomery and Jonathan are now friends
Oct 3
Lucia is now a member of GCT Connect
Oct 3
Donald Gerstenkorn is now a member of GCT Connect
Oct 1
Jorgen Kristensen and Monica Lea Christiansen are now friends
Sep 30
 
 
 

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