Giant Cell Tumor Network

Heather 27, Female United States: Share

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GCT Patient Support

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GCT Patients

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Very different surgery experience.
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Started this discussion. Last reply by Dolina Nov. 21, 2008.

How do you describe your illness?
12 Replies

Started this discussion. Last reply by Sarah Gerstenkorn Sep. 29, 2008.

New groups!

Started Feb. 8, 2008

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Faina Rakhvarger joined Heather's group

GCT Patients

A group for GCT Patients.

October 31

tina puterbaugh joined Heather's group

GCT Patients

A group for GCT Patients.

October 20

Nikki Wegman joined Heather's group

GCT Patients

A group for GCT Patients.

October 14

Heather and CAROL are now friends

September 6

Yvon Cormier joined Heather's group

GCT Patients

A group for GCT Patients.

September 1

Heather and Bryan are now friends

August 19

Bryan joined Heather's group

GCT Patient Support

A group for family and friends of GCT patients.

August 12

Professor Richard joined Heather's group

GCT Patient Support

A group for family and friends of GCT patients.

August 9

Profile Information

About Me:: Twenty six year old mother and wife.

How do GCTs affect you?: GCT patient

Location of primary tumor:: Distal tibia.

Date of diagnosis of primary tumor:: Around March of 2006.

Treatment of primary tumor:: Removal of tumor with bone graft from my hip.

Facility treated at for primary tumor:: University of Washington Medical Center.

Would you recommend this facility and it's Doctors to another GCT patient?: Yes, absolutely.

Recurrence? If so, where?: Yes. Exact same place, distal tibia and then fibula.

Date of recurrence:: Around February of 2007 for the tibia and August of 2008 for the fibula.

Treatment of recurrence:: Removal of tumor with bone graft from donor bone for tibia. Removal of tumor and metal implant for fibula.

Facility treated at for recurrence:: University of Washington Medical Center.

Would you recommend this facility and it's Doctors to other GCT patients?: Yes! I can't say yes enough! UW is amazing.

Metastasis? If so, where?: Yes. In lungs.

Date of metastasis discovery:: Around June of 2007.

Treatment of metastasis:: None. Scans every three months.

Facility treated at for metastasis:: Seattle Cancer Care Alliance.

Would you recommend this facility and it's Doctors to a fellow GCT patient?: I think so. I'm not sure yet.

Tumor free?: No.

Current GCT Status:: About thirty-ish GCT nodules in lungs.

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Heather's Blog

Hello, all. Surgery is tomorrow. I feel like we're just about as prepared as we're going to be. My m…

Hello, all. Surgery is tomorrow. I feel like we're just about as prepared as we're going to be. My mom is here now and that is amazing. Having her with me at my pre-op appointments and my lung check up has been great. My lung scans went well. There is still no change in the tumors. That's very good news. That means that we are still without treatment. My doctors did mention something a clinical trial that they are interested in signing me up for, but I'm not so sure. I'd rather not do anything a… Continue

Posted on September 10, 2008 at 11:24pm — 3 Comments

New GCT News

I had a check up for my ankle yesterday. Some strange things had been going on and so we called in an early check up. I went in to get an x-ray and unfortunately, we found that my GCT is back in my bones. I have a new tumor in my fibula, right next to where my tibia tumors were. This new GCT is about the size of a golf ball. The tumor was too small to detect at my last check up in May, so it was a surprise to all of us. My Doctor told me that it's very strange for the GCT to jump to a new bone l… Continue

Posted on August 10, 2008 at 10:54am — 4 Comments

Scan News.

Hey everyone! I just had my three month lung scan last week and everything went very well. There has been no change at all in the tumors. Obviously it would be better if they were shrinking or something like that, but no change at all is great and I'll take it. I was feeling really nervous because there had been growth last time so I'm glad to hear that they didn't grow this time. I just had to share my good news. Woo-hoo!

Posted on June 17, 2008 at 12:09pm — 2 Comments

Checkup tomorrow.

Hey, everyone! Tomorrow is my big CT scan to check up on my lung tumors. Wish me lots of luck! I look forward to reporting back with good news. I hope everyone is doing well. I can't even tell you how helpful it has been to me to read everyone's stories and information. You guys rock!

Posted on March 10, 2008 at 6:21pm — 2 Comments

New Groups!

Hey, all. There are some members who have suggested that we find a way to better distinguish who is a GCT patient, and who is a GCT patient supporter. So, I have started a group for both, so that you can visit or join a group and easily see who's who. Please feel free to join the group that applies to you, and don't forget to take full advantage of the forum. Thanks!

Posted on February 8, 2008 at 3:17pm —

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At 6:10pm on August 20, 2009, Mary said…: Hi Heather. My nodules were first discovered in Aug. 2006 when they were all smaller than 1 cm. They initially just started monitoring them with frequent CTs. Over a 18 month period one changed from 0.5 cm to 0.9 cm and then to 1.5 cm. I then had VATS done which confirmed it was metastatic GCT. After more contiunued growth they started me on PegIntron in Nov 2008. They took me off it in July 2009 because of continued growth and cytopenias. Also in order to be on Denosumab you can not be on Interferon. Tomorrow after many delays I am having a CT guided needle biopsy which I need for the Denosumab trial since my 2008 biopsy is too old. The biopsy has to conclusively show GCT not just bone for the trial so wish me luck please that they get a good sample that is diagnostic. I hope your nodules stay stable or even better just regress with no treatment. Good luck!

At 4:46am on May 22, 2009, caroline said…: Alert heather have u seen the previous weird post , i think the site has been invaded it sound really dodgy.Hope you can remove it . Hope ur ok otherwise

At 11:41am on March 24, 2009, Susen said…: Hey Heather. How are you doing?

At 10:20am on March 2, 2009, CAROL said…: Heather How are you doing? Are you able to walk ok after your sx.

At 6:50am on March 1, 2009, Mary said…: Hi Heather. I am new to GCT Connect but I just have to tell you how wonderful it is to be able to comminicate with other GCT people. It helps so much to have contact with other people who can actually relate to what you are going through and share helpful info. I hope things are going well for you. I also have disease in my lungs but mine has been progressing so I am now on Interferon therapy. My next round of testing is early June and it is weird how I dread it, yet at the same time can't wait to find out what the latest news is. I also have a question. How do you join the group GCT patients? There are 18 members on there and I have clicked on it but do not see any way to actually join it. Thanks for any info. Mary

At 4:07pm on January 25, 2009, CAROL said…: Heather
Do you have any symptoms with the lung tumors ? Carol

At 8:42am on December 27, 2008, CAROL said…: hi heather How are you doing, I hope you have had a good holiday. I am steadly improving. I am now 5 months post op. I go back for a checkup in 3 weeks. I am still using a one crutch for walking distances. I am goin to the gym & exercising in the pool. It has been so slow. but from what i have heard from the members here my progress is probably is typical. let me know how you are doing. carol

At 7:52pm on December 20, 2008, Lauren said…: Thank you so much! It really just helps that there is something like this out here because it really helps to not feel so alone!!

At 2:40pm on November 26, 2008, Dolina said…: Hi Heather, Thanks for your message!! I am so glad to have found this group, ive never really had anyone to talk to about it cus its so rare.. well how are things going with you at the moment?

At 9:52am on November 3, 2008, CAROL said…: HEATHER I WAS DX WITH GCT 7/28/2008 M Y TUMOR IS IN THE DISTAL LEFT FEMUR I AM HEALING BUT MY KNEE IS SORE & HURTS WHEN I WALK SOME DISTANCE. DO YOU KNOW OF ANY SITE OF THE THEORIES OF WHY GCT DEVELOPS