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

Pregnancy after a Denosumab treatment? 1 Reply

Started by Krzysztof. Last reply by James 17 hours ago.

Checkups- how often? 1 Reply

Started by Zoe. Last reply by Theresa d yesterday.

Pain in cold weather? 4 Replies

Started by Theresa d. Last reply by Theresa d on Wednesday.

Blog Posts

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%…

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Posted by Thomas Ronan on February 2, 2015 at 3:38am — 4 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…

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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

Surgery #4, 1 Year checkup

I had my one year check up on Thursday, October 23. Ironically this was exactly one year to the day from the last surgery. I was nervous about this one, the leg has been feeling weird again and I was sure I was headed for another surgery. Good news, all clear. They did an MRI with contrast and lung X-rays. All the scans were clear, no sign of recurrence and everything looked good. They want me back in three months. 

Hope that everyone else is doing well. Will check back in three…

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Posted by John N. Montgomery on October 25, 2014 at 1:05pm — 5 Comments

Latest Activity

Paula Elizabeth peacock is now a member of GCT Connect
yesterday
Krzysztof posted a discussion

Pregnancy after a Denosumab treatment?

We would be very thankful if you could share your experience regarding pregnancy after a Denosumab treatment.Has anybody already given a birth after the treatment ? Does it make sense to make additional diagnostic e.g. CT or PET before ?Can pregnancy cause a tumor recurrence ? What do your doctors recommend ?Our Denosumab treatment has been accomplished in April 2013, then my wife got knee endoprosthesis. Since then everything is fine.Many thanks for your replies.See More
Friday
Zoe posted a discussion

Checkups- how often?

I just had my 2 month checkup after my operation, without scans or anything. My doctor originally said he wanted to do scans every 3 months, but now he is saying just once a year, a nd no chest scans? Can anyone confirm that 3 months is the norm? Thanks.
Thursday
Lynn Lepper posted a status
"I just had my 4th denosumab injection yesterday and so far.so good. I do feel less pain so that is great. Now to the monthly injections"
Feb 20
Theresa d posted a discussion

Pain in cold weather?

Anyone experience extra pain during the cold weather months? Specifically those who have had titanium implants?  See More
Feb 19
Vincent seguin is now a member of GCT Connect
Feb 15
Laura posted a discussion

Pain Management post operative -please help

Hi everyone my name is Laura I am 25 years old. I was diagnosed with GCT of proximal tibia right knee April 2014, 3 weeks later I had my GCT curretege and bone cement and wires put in, my gct was much larger than the doctors realised leaving me with literally mm of bone left at the top of my tibia. Right from the beginning of my recovery I suffered with severe nerve pain I was given Gabapentin, slow release morphine, oramorph I did suffer many 'nerve pain attacks' where it felt like my legs…See More
Feb 11
Laura posted photos
Feb 11
 
 
 

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