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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GCT Connect is moving!

Hi, everyone! I'm writing because I wanted to let you guys know about some changes that are coming to GCT connect. I'm not sure how many of you are aware of what's been going on with me personally over the past few years, but in 2012 my husband and I were blessed with a son who is visually impaired and is also currently being evaluated for autism spectrum disorder. Because of this, I am no longer working or going to school. Due to my reduced income and the costs of keeping this site open, I've decided to move us over to facebook.

I think that this move will help us to stay in better touch since most of us are on facebook everyday anyway, and it will help us to reach more potential members. I've really enjoyed hosting this site for everyone and I hope that we're able to keep GCT Connect alive, even if it's in a different arena. I hope that you guys all understand and are willing to make the move with me. Please find us over at:

facebook.com/gctconnect

This website will remain active through the end of this month. Please feel free to find me on facebook and to become friends with me over there! If anyone has any questions about the move, please don't hesitate to contact me. Thanks for being here all these years! I hope to see each and every one of you over on the facebook page!

All the best,

Heather

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Forum

Chronic Pain from GCT

Started by Peter D Apr 30.

GCT on fifth metatarsal of foot 2 Replies

Started by Susan C. Rucci. Last reply by Susan C. Rucci Mar 30.

Lung metastasis of benign GCT 12 Replies

Started by Itay. Last reply by Rafael A. Mar 26.

Blog Posts

15 and scared.

Hello, my name is Darby. When I was 15 I found out I had GCT. I was told,I,was one of,the youngest people in Oklahoma to,have gct. My doctor first said were doing surgery. An it went good. She said,if I got one I,had a 50% I would have another, 9months later I found out I,had my second tumor. They did another surgery but th risk,of having more got higher. About 6months later my doctor did a ct of my chest to,check my lung an they found four more tumors an on top of that they found a third tumor… Continue

Posted by darby wicks on March 22, 2015 at 10:03pm — 5 Comments

Recurrence

Sadly I found out on Friday that my little friend is back in my knee - same place as last time and obviously much smaller because it's been caught relatively early.

So - back to the original plan. I'll be going under the knife at some point in the next two weeks for a repeat of what we did last time - removing the original cement and replacing it again. Feeling surprisingly OK with it - I mean it's a risk we all live with and I've seen rates of recurrence range from 9% - 34%…

Continue

Posted by Thomas Ronan on February 2, 2015 at 3:38am — 6 Comments

Surgery #4, 15 month checkup

Had my regular 3 month checkup yesterday, Just X-rays this time, all was good. No sign of return, which is good news. That leg feels weird just about all the time now, so I never know if what I am feeling is tumor, or surgery or just because I m old. Haha. Anyway, go back in three months for next checkup. Another MRI with contrast scheduled for that one.

On a happier note I will finish my masters degree in April, woo hoo! Will be glad to have that over and I am never going back to…

Continue

Posted by John N. Montgomery on January 31, 2015 at 12:05am — 2 Comments

Another surgery coming up

Last month went for a MRI and the tumor was back. Wasn't what I wanted to hear but expected it since the last x-ray looked different. This time we are doing the cement since i grew a good amount of bone and my dr thinks it will hold. Which means a lot less down time for me..yaya!! We will have to see. She always lays out several  surgery options just in case things don't go as planned. I'm optimistic either way it goes! ABC giant cell in third third metatarsal in left foot. 

Posted by Mollie Starnes on January 17, 2015 at 8:15am — 2 Comments

18 month update

Hi everyone,



Just popped back online for the first time in a few months and so pleased to see everyone is doing so well. It has now been 18 months since I joined the site and things are going really well. I've managed to retain 100% movement in my knee and whilst I won't be running anytime soon I can use the X Trainer and stair machine in the gym to try and keep fit and healthy.



Like a lot of people on this site I suffered more from the mental after effects than the… Continue

Posted by Thomas Ronan on November 3, 2014 at 8:33am — 3 Comments

Latest Activity

wendykong joined James's group
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GCT'ers in the Denosumab drug trial

A place for those in the Denosumab Trial, an opportunity to discuss results, side-effects, expectations, etc. while on Denosumab
May 19
Drea joined Ian MacGregor's group
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GCT of the sacrum

Keeping track of problems and progress when this difficult location is involvedSee More
May 12
Drea updated their profile
May 11
Profile IconDonna Willett, Drea, Dimi and 3 more joined GCT Connect
May 11
Chloe is now a member of GCT Connect
May 2
Peter D posted a discussion

Chronic Pain from GCT

I want to share this in hopes of helping suffers of chronic pain from GCT or just chronic pain in general.  While I have not updated my profile in a while I have now under gone 6 surgeries due to GCT in my Left Distal Femur and 1 needle biopsy. Due to these surgeries the area has experience a lot of trauma.In July 2012 time frame I had my 1st reoccurrence of GCT mainly due to an orthopedist that did not understand the tumor. I was sent home from a deployment in Afghanistan in August of 2012…See More
Apr 30
Loeffohnda updated their profile
Apr 28
Profile IconLoeffohnda and Larissa Pahomov joined GCT Connect
Apr 27
 
 
 

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