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Kristen Female Chesapeake, VA United States: Share

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Denosumab...
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Started this discussion. Last reply by Kristen Mar 24.

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Blake's Mom in VA

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susan and Kristen are now friends

July 17

Kristen added a discussion

Denosumab & Fertility

Does anyone know if there are any long term side effects regarding fertility with this drug? We asked the doctor in Washington and he didn't really know of anything but stated since this in a new drug there is really no data and that we should err...

April 1

Kristen and Diane Stern are now friends

April 1

Kristen and CAROL are now friends

March 24

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March 8

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March 5

Kristen added a discussion

Denosumab...

I just found out about this new trial and see someone has already gone to Washington to check it out. There is an open trial and the medication is offered in several different states from what I understand. We are headed to Washington on March 12t...

March 4

Profile Information

About Me:

I am the mother of a 19 year old son, Blake, who has GCT of the sacrum. He has had surgery, then a reoccurence and recently proton radiation. We live in VA. Doctors are now suggesting chemo... We are trying to get a fundraiser/education/awareness events here in the upcoming months. We are leaving tomorrow to go back to Texas for follow up MRI/CT...you all know the routine....

How do GCTs affect you?

Family member of GCT patient

Location of primary tumor:

Sacrum

Date of diagnosis of primary tumor:

3/08

Treatment of primary tumor:

Sacral laminectomy/nerve embolization
Proton Radiation

Facility treated at for primary tumor:

Duke University, Durham North Carolina

Would you recommend this facility and it's Doctors to another GCT patient?

Yes

Recurrence? If so, where?

Sacrum; same location

Date of recurrence:

7/08; came back almost 3x's larger

Treatment of recurrence:

Proton radiation

Facility treated at for recurrence:

MD Anderson

Would you recommend this facility and it's Doctors to other GCT patients?

I would recommend the proton radiation but it is still to early to make that call

Metastasis? If so, where?

Tumor free?

Current GCT Status:

Same except now Blake's sacrum is broken in half and he has multiple fractures of his sacrum

Comment Wall (13 comments)

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At 6:30pm on October 18, 2009, Lauren said…: No, unfortunately it grew back without the sacrum at all and i tried to get into the denosumab trial but since my private insurance dropped me as soon as i got sick last year I had to go on illinois medicaid and they said they COULD accept that but they wouldn't because they'd have to register me with each doctor I see individually. I'm so MAD!!!! Now i have to have chemo and radiation followed by surgery. Wow. I don't even know what to do I'm so mad.

At 6:47pm on July 17, 2009, susan said…: Hi Kristin
Great news Blake can get aound. Does he have pain? Incontinence?
Corey's doctors at this time feel the denosumab is not toxic enough..he said maybe after chemotherapy. Scans will be soon after this round of treatments aand I have to stay positive. He is starting to have withdrawals again since he hasn't had any oral pain meds for over 36 hours. This is the worst thing that can happen again. Will talk later Kristen.

At 2:02pm on July 17, 2009, susan said…: Hi Kristen, Thanks for the prayers and pray that your son heals. With the sacrum broken, can he move around? Has Blake had any GCT's occur anywhere else? How often does he get scans? Corey wore a turtle shell brace with thigh cuffs attached after his sacrum surgery. We as parents have to be so strong for the boys, some days are better than others..you know. Corey is now having chemotherapy and is so sick this time. His Intrathecal pain therapy pump is working well for the leg pain. Please keep in touch.

At 1:46pm on July 8, 2009, Quinton said…: Doing much better--you? Check my blog later!

At 5:32am on May 22, 2009, Kristen said…: Glad all is well....have a great holiday weekend!!!!

At 4:43pm on May 7, 2009, CAROL said…: Hi Kristen, I have been going to PT & taking advil I am doing so much better I must have had a lot of inflammation that has quieted down I am working to build strenght around my knee . I hope Blake is doing good now Thanks for thinking of me carol

At 11:23pm on May 6, 2009, Lauren said…: Hey!!

Well, I sure would LOVE for it to be the end of my journey!! haha!! I don't know. My doctor told me there is a good chance it will come back even with my sacrum being gone. I don't know how that works really. I am having my first MRI on June 3rd to check for a recurrence. They hadn't planned on taking my sacrum so that's why I wonder what their revised plan is now that that piece is gone. I should have asked that today!!! Oh jeesh!

I just heard about that denosaub the other day, what is that? I am learning a little more every day just how major and unusal my surgery really was! I keep getting new residents and doctors mentioning that they had heard of me or heard of my surgery in the hospital!! WOW! This is still all such a shock, I don't know if that part wears off lol!!

Haha my tumor needed a name, something that annoying had to be named something equally awful!! :)

At 5:44pm on May 5, 2009, Lauren said…: Hey Kristen!!

i would LVOE to tell you more!! Well, let's see... I had the surgery at Rush University Medical Centeri n Chicago, IL. I did repeat embolizations for about 6 months first with infusions of Zometa once a month. My doctor wanted to try that before committing to any surgeries. He is an orthopedic Oncologist/Solid Tumor Specialist/Trauma Specialist. When the pain was too much to bear and the tumor looked to be getting bigger on one side he said it was time and assembled a team of docs, all from Rush, who assembled their teams and did the deed. I had a plastic surgeon and a Spinal Specialist also with a lot of residents!! What else would you like to know?? :) I was on minimal pain after a week of being home and that lasted for a few weeks but now the pain is getting worse and worse so tomorrow I'll find out why I hope!! Does your son have any metal in him? This was one of two options because my sacrum was beyond repair!!

Write me back!! :) Lauren

At 3:21pm on April 22, 2009, CAROL said…: Dear kristen I went back for my checkup 8months No tumor. But I still use a crutch & have a lot of pain. My dr says everything is ok. He does not know what is wrong. I feel so frustrated. carol

At 12:46pm on March 26, 2009, CAROL said…: Dear kristen Thanks for replying I like my Dr. & in fact He probably saved my life.. I was diagnosed osteosarcoma at Mcv after a tumor biopsy. They wer going to give chemo therapy when I went to Duke to see the sarcoma team. carol