GCT Connect

Giant Cell Tumor Network

Mary
  • Female
  • Lakeland, FL
  • United States
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Mary's Discussions

How long is the recovery process?

Replied Oct 28

Would love to hear from anyone who has undergone treatment with Interferon.

Replied May 26

Trying to get into Denosumab trial

Started Apr 1

 

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Latest Activity

susan and Mary are now friends
October 23
Mary updated their profile
October 21
Mary updated their profile photo
September 30
Mary and Adam are now friends
September 30
Mary added a blog post
I just heard news today that I am finally in the Denosumab trial. I have been working towards this goal for months now. First I went to the Philadelphia site back in June where they said I was a perfect canidate for the trial but then it appeared ...
September 25
Mary added a blog post
I recently returned home from M.D. Anderson Cancer Center in Houston. Unfortunately after 7 months treatment with PegIntron, there is no sign of regression or calcification in my lung metastases. The small nodules which are too many to count are s...
June 15
Mary added a discussion
Trying to get into Denosumab trial
I know there are several of you out there already in the Denosumab trial. I am trying to participate also and learned today that they are increasing the number of participating sites to 30. Yeah! However the requirements for the trial are a biopsy...
April 1
Mary and Patricia are now friends
March 22

Profile Information

About Me:
I am a 44 year old wife and mother of 2 children in college.I was diagnosed in 1995 with a GCT in my left proximal tibia and underwent surgery and reconstruction with methyl methacrylate. I followed up for 5 years with no evidence of recurrence or metastasis. Then in 2006 numerous bilateral pulmonary nodules were discovered. These were monitored by frequent chest CT until it was determined I needed to have VATS wedge resection which confirmed metastatic giant cell tumor.
How do GCTs affect you?
GCT patient
Location of primary tumor:
left proximal tibia
Date of diagnosis of primary tumor:
1995
Treatment of primary tumor:
Curettage and reconstruction with methyl methacrylate
Facility treated at for primary tumor:
Florida Orthopedic Institute
Would you recommend this facility and it's Doctors to another GCT patient?
no
Recurrence? If so, where?
none
Date of recurrence:
NA
Treatment of recurrence:
NA
Facility treated at for recurrence:
NA
Would you recommend this facility and it's Doctors to other GCT patients?
NA
Metastasis? If so, where?
Yes bilateral lungs (too many to count)
Date of metastasis discovery:
August 2006
Treatment of metastasis:
First nodules were just monitored by frequent CTs. Then when one of the nodules tripled in size I had VATS wedge resection of 2 nodules done in March 2008. I was then referred to MD Anderson Cancer Center and tried PegIntron therapy from November 2008-June 2009. The pulmonary nodules continued to increase in size during PegIntron treatment so MD Anderson suggested the Denosumab trial which I am currently participating in now.
Facility treated at for metastasis:
MD Anderson Cancer Center 2008-2009. Pennsylvania Oncology Hematology Associates -currently in Denosumab clinical trial
Would you recommend this facility and it's Doctors to a fellow GCT patient?
Yes to both facilities
Tumor free?
No
Current GCT Status:
In Denosumab clinical trial

Mary's Blog

Mary

I am finally in the Denosumab trial!

I just heard news today that I am finally in the Denosumab trial. I have been working towards this goal for months now. First I went to the Philadelphia site back in June where they said I was a perfect canidate for the trial but then it appeared that my local oncologist's office was going to become a trial site very soon and Amgen said sometimes there could be difficulties in changing sites so they suggested I wait until the trial was up and running locally. (Amgen is actually looking for more… Continue

Posted on September 25, 2009 at 10:02am — 2 Comments

Mary

Heading to Philadelphia for Denosumab pretrial appointment

I recently returned home from M.D. Anderson Cancer Center in Houston. Unfortunately after 7 months treatment with PegIntron, there is no sign of regression or calcification in my lung metastases. The small nodules which are too many to count are stable but the largest one continues to grow throughout treatment. My oncologist wants me to get in the Denosumab trial so I am headed to Philadelphia next week for an appointment with Dr. Staddon. If I can't get in the trial the other possible options a… Continue

Posted on June 15, 2009 at 4:00pm — 3 Comments

Comment Wall (33 comments)

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At 5:41am on October 20, 2009, Diane Stern said…
I'm so glad you had no negative reaction to the treatments. Hopefully you'll start seeing positive results soon. The weather here has been unusually cold for this time of year. We're on our 10th consecutive day of below normal temps. Unfortunately for you, this week is warming up, but Friday is back to rain and cold. Springsteen was wonderful, as usual. Thanks for asking. I know we'll miss you next month, but hopefully we'll see you again soon.
At 3:15pm on October 12, 2009, Diane Stern said…
You are so right. Having supportive family is so important. During all of Ilana's hospital stays it truly broke my heart to see patients who never had anyone at their bedside. Also, I owe you an apology. I didn't see your post about meeting for lunch until yesterday. We would have loved to. Maybe if we're ever on the same schedule we can do it. Hope you're having fun in NY. Good luck with this week's injection.
At 4:58pm on October 10, 2009, Diane Stern said…
Hi Mary...It was a pleasure meeting you and your husband yesterday at Dr. Staddon's office. I hope everything went well with your injection and that you get the same wonderful results that it seems everyone else is getting. Hope to run into you again.
At 8:20am on October 9, 2009, Christina Alamirie said…
Do you have the contact information for the people involved in running this clinical trial? I ran across it last night and now I can't find it. I need to know how they consider a person with giant cell sacral tumor eligible or not! And also what I need to provide them! Thanks a bunch, you are so lucky to be eligible, good luck!
At 6:05pm on September 27, 2009, Diane Stern said…
Hi Mary--Ilana's appointment on the 9th is at 2:45 so I'm sure you'll still be there. I'll make sure to have Deb introduce us.
At 10:54am on September 25, 2009, Diane Stern said…
Congratulations!! That's really wonderful news. We'll be there on the 9th too. I think our appointment is in the afternoon (around 2 or 3). What time will you be there? Ilana's been feeling pretty good. She goes for her scans next week. We're keeping our fingers crossed.
At 6:52pm on August 27, 2009, Diane Stern said…
Although most others would find this strange, I'm glad to hear that the biopsy showed GCT. When you go on the 18th (we'll miss you by exactly 1 week) Deb will go over the paperwork with you and explain everything. Then it should take about another week before amgen approves you. Best of luck with everything. I do hope our schedules coincide one of these days.
At 7:51am on August 24, 2009, Diane Stern said…
Thanks for the update Mary. I sure hope the biopsy results come back as you wish and you can move along with the treatments. Please keep me updated. Ilana hasn't really had any side effects from the Denosumab treatments. She hasn't been feeling wonderful lately (pain and nausea), but I think that's mostly because she hasn't been giving herself enough time to rest.
At 8:54pm on August 22, 2009, Diane Stern said…
Hi Mary,
I'm just checking in and wondering if you've had any luck with Dr. Staddon and the denosumab trial. Hope you've been feeling well.
Diane
At 1:44am on August 19, 2009, Heather said…
Hi, Mary. I just wanted to ask you a question about your history. Am I correct in understanding that your lung nodules didn't start to grow until two years after your metastasis? I just reached one year post metastasis, but am still having CT scans every three months. No major growth so far. They just seem to be shifting, shrinking and growing a bit here and there.

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