Quinton's Page

About Me:

Hi! My husband and I live in St. Louis as of a couple of years ago. I finished grad school and started work with Edward Jones, Co and he is finishing grad work here in town. When I was diagnosed with GCT in a vertabrae, I blogged about it on myspace, and my now friend Heather picked up on me quick! Thanks to her for putting together a wonderful way for all of us to communicate, and for being so proactive in a time when, I'm sure, it can be hard. Kudos, Heather!

How do GCTs affect you?

GCT patient

Location of primary tumor:

T10 vertabrae (middle of back)

Date of diagnosis of primary tumor:

Feb. 6, 2007 - Ah, I remember like it was yesterday!

Treatment of primary tumor:

Without all the medical mumbo jumbo--first, they removed the tumor surgically by deflating my left lung and approaching it from the west. They also severed 3 nerve roots that were in the way. Numb now in my midriff, but no big. Then the spinal column needed to be decompressed b/c the tumor was pressing in on it. So imagine placing a paper weight or something on a straw, then removing the weight. The straw still needs to be "poofed" out again. Then, bone from my rib and tail bone were gravelized (morseled up) and put into a titanium Chinese finger trap basically (cage) and inserted with bolts and Frankenstein parts where the vertabrae used to be. Big scars, but good work was done. After I recovered, I did about 4 or 5 weeks of traditional radiation, but the metals installed made it difficult to know exactly where to treat. Metal can obfuscate MRIs and CTs so badly that no information is gathered by performing them.

Facility treated at for primary tumor:

St. Louis University Hospital (SLU)

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

No. I switched later because my physicians did not work well together, although the surgeon did excellent work. Plus the support and nursing staff make too many mistakes and are unprofessional.

Recurrence? If so, where?

Yes, peri-spinal recurrence (around the spine, T9 region, so further up and to my right, but in soft tissue)

Date of recurrence:

July 23, 2008, so about 1.5 years after orig. diag.

Treatment of recurrence:

The peri-spinal tumor is being temporarily treated with glucocorticosteroids to reduce the swelling until my insurnace will approve Cyber Knife radiation. It is inoperable according to one physician. I'm seeking other opinions. Cyber Knife will have to be done at the other poopie hospital since it's the only facility around with this kind of technology. This is the only option possible right now for this tumor if it is indeed inoperable.

Facility treated at for recurrence:

Barnes Jewish Hospital :-) and SLU :-(

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

Barnes is awesome and is even working with SLU to coordinate my care. A++

Metastasis? If so, where?

Yes, both lungs.

Date of metastasis discovery:

Oct. 12, 2007 - about 6 months after original diag.

Treatment of metastasis:

Interferon Alfa for 3 months. Consulted a physician who'd done research on interferon in December and he recommended Pegylated Interferon (brand name PEG INTRON A). Began taking it in Feb, and tolerated much more easily. I continued to be at work full time until July after 6 months more, it was determined that it has had no effect. The lung tumors have grown roughly 50% every 3 months with the largest being about 25 mm now (an inch or so). After cyber knife treatment in August, traditional chemotherapy will begin. I also take Zometa which increases bone density to fight any bone resorption that GCT can do.

Facility treated at for metastasis:

Barnes Jewish Hospital

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

Yes.

Tumor free?

No :(

Current GCT Status:

Peri-Spinal tumor is around 2 or 3 cm, lungs have a 2.5 cm nodule and innumberable others.

Website:

http://www.myspace.com/qramirez