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Giant Cell Tumor Network

Quinton
  • Male
  • St. Louis, Missouri
  • United States
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Quinton added a blog post
Half a year later, I'm on it again. And again, my apologies for not being on here sooner. Many folks have been asking about the situation. I'M ALIVE! Although pain killer withdrawals this past week have made me regret that just a bit. So from whe...
July 8
Quinton is now friends with minn and James
July 8

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At 2:20pm on August 28, 2009, Mary said…
I am so glad the Denosumab is working so well for you. I hope to be in the trial in about a month. I just had another lung biopsy done last week to confirm GCT but the soonest I could get an appt. with the trial Dr. in PA. was mid Sept. I really hope I respond as well as you to the drug. My last Pet scan shows more SUV intensity than past ones and even the pathology report from this last biopsy shows even more Giant cells present than my other ones in the past. Take care and I wish you continued success with your treatment!
At 3:10pm on March 27, 2009, ilana said…
Hey man,I just posted about my doctor opening spots for a denosumab trial (the parent company, Amgen covers the cost.) I have tumors in my lungs and pelvis and went through all sorts of drama with surgery and cyberknife (neither worked) but denosumab has worked like a charm. PLEASE look into it. Your story is just terrible, and i wish you all the best.
At 4:46pm on March 4, 2009, Kristen said…
Q.....How are you doing? K10
At 5:56am on March 3, 2009, minn said…
Hi Quinton..i am knew here.i read about your story and i know how it fells like. I am also having GCT,but mine is in T6. Was diagnosed in December 2008 after biopsy was done. I had my surgery done on the 6th January this year. They removed the whole t6 and i laminectomy of t5 and t6 since the tumor got into the posterior arch besides my vertebrae body.This Friday gonna met my surgeon to discuss the possibility of having radiotherapy since the recurrence rate is quite high in GCT .Did u had yours?how was it? Anyway, i am a bit confused here.. after reading your story, my surgery is quite different, they didn put any cages to replace my lost vertebrae,they just left it empty.. is it normal? i am a bit confused.Anyway, i hope u doing good with your therapy,hope u doing well...gud luck
At 1:19pm on March 2, 2009, Mary said…
Hi Quinton, I have read your story and you have certainly had a struggle. I also have bilateral pulmonary nodules and started PegIntron therapy 15 weeks ago. I hope that it will do something for me. How are things going for you now. Good Luck!
At 8:15pm on December 14, 2008, Kristen said…
Quinton: We just got home tonight from Texas and Blake's tumor is 95% dead, if those are the right words. The outer rim is still active and his sacrum is broken in half and he has multiple fractures....and they have not healed at all,,,but great news for now! I would love to hear about your treatment and what they are doing for you. They have reccomended intraferon A for Blake...a shot that he is suppose to get everyday indefinitely...yikes...we are holding off for 6 more weeks in hopes that the entire tumor will die! We are happy to share also and do anything to help you or anyone out there! Continue to take care and know we are saying a prayer for you! Lots of love from VA! Kristen
At 1:25pm on December 9, 2008, Kristen said…
Quinton: I hope you are feeling well today! It totally sucks what you are going through! I am trying to join some blogs and met some people with similar experiences as my 19 year old son. I am old so not to good with all this great technology... My son, Blake, has a GCT of his sacrum. It seems like all these doctors around the country treating one person should be documenting this and collaberating so the next person will have the benefit....I know my son would be willing to share anything as he says he wouldn't wish this on anyone....Take good care! Kristen from VA
At 6:58am on August 14, 2008, Karen said…
Hey sugar pie. I need some information from you on what you need from Care Coordination regarding authorization for treatment. I think I finally have some contacts. Love ya babe, Karen
At 7:20pm on August 7, 2008, courtney said…
i just joined, not sure if you remember me. i was in dave's training class at united, and a friend of scott. well anyways, just wanted to let you know i will keep you and your family in my thoughts.
-courtney pinkham
At 9:03am on August 5, 2008, Heather said…
I'm so glad you joined!

Profile Information

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

Quinton's Blog

Quinton

Denosumab Success

Half a year later, I'm on it again. And again, my apologies for not being on here sooner. Many folks have been asking about the situation. I'M ALIVE! Although pain killer withdrawals this past week have made me regret that just a bit.

So from where I left off--

Grumpy Tumor (aka peri spinal tumor) is still pretty much invisibile to radar since it hides out behind the metal cage in my back. But shortly after my last posting in the winter time, I experienced increased leg strength, loss of numbn… Continue

Posted on July 8, 2009 at 2:28pm — 4 Comments

Quinton

Drug Trial

Folks have been asking how I've been doing and I've been bad by not posting earlier. My "To Do" list gets away from me as this winter wanes. I want to thank everyone for the seemingly inexhaustible prayers, thoughts, cards, calls, and other demonstrations of your support in these uncertain times.

Living in St. Louis, I've make several trips to the Twin Cities now with Mom, Dad, and husband in tow. My weekly trips are at an end. I have been undergoing treatment in an experimental drug trial. Thi… Continue

Posted on December 8, 2008 at 4:19am —

Quinton

Chemo

After many ups, downs, twists, turns, and general chaos, I’ve made the decision at the recommendation of my oncologist to begin chemotherapy on Monday, September 15, 2008. Here’s how it happened basically.
I had the spinal tap to see if there was any spinal cord compression caused by the recurring GCT lesion. An MRI or CT scan is thwarted by the various metallic components installed to stabilize things back there during the first surgery. So a spinal tap with a little dye injection and special C… Continue

Posted on September 8, 2008 at 10:00pm — 5 Comments

Quinton

Two-Front War

First front – Family vs. Insurance Company. This is an exciting episode actually.
My mother, God bless her, is very proactive and has started getting the Missouri Insurance Commission involved in getting the Cyberknife radiation treatment approved as medically necessary. Cyberknife is very expensive, but is the best chance I have. The insurance usually takes 30 days after receiving a request to process it, which does not guarantee first time approval. Advice: You must be your own advocate as the… Continue

Posted on August 15, 2008 at 10:51pm — 6 Comments

Quinton

Treatment Plan Update - Lungs and Recurrance

Here's an update from today's consultations with my physician team:

Ortho Surgeon - I got a second opinion about whether or not the perispinal recurrance of the primary bone tumor was operable. Both physicians from two different hospital systems here in St. Louis agree that the risk of bleeding, paralysis, and other nastiness would outweigh any potential long term benefits to surgically removing this tumor. Another round of radiation is the best option right now. I'm waiting on insurance… Continue

Posted on August 4, 2008 at 3:28pm — 5 Comments

 
 

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