"My story, my life, my battle with a disease that has forever changed my life, but won't define who I am! I will fight, I will overcome, I will be healed! I have faith and hope!" Christina A.

About Me:

All my life revolves around is now finding ways to cure my giant cell tumor of the sacrum and right hip bone. My life was so wonderful. In 2001 I graduated from LSU and married the love of my life. In 2003 my son was born. I started limping around and complaining of lower back pain! I went to the doctor and he took an x-ray of my spine (not the sacrum) and put me through physical therapy for two months, 2 months of pain and suffering and making matters worse. Eight months went by until the pain got so bad I was unable to walk or move at all. He ordered a MRI and in 2004 my life changed forever for the worse! My tumor was discovered and I had extensive damage to both my sacrum and right hip bone. I was told if I had waited 2 more weeks my pelvic bone would have cracked in half. Only a very thin layer of bone remained connecting my hip and spine together. My doctors at Tulane performed the unsuccessful tumor removal surgery and bone reconstruction. After losing 6 liters of blood, I ended up in the ICU for 3 days. After lying face down in the operating room for 6 hours, I was so swollen after surgery that I could barely open my eyes. I was in a wheelchair for 6 months because I could not put any weight bearing on my right leg and hip due to the bone graphing. I needed to let my hip regenerate new bone growth and give it some time to heal and be strong again. "Believe me, raising a newborn, recovering from 3 major surgeries back to back and being in a wheelchair in a house that is not wheelchair accessible, was not easy!" My husband, my mom, mother-in-law, and sister-in-law all had to lift me in and out of the shower for 6 months; clean my incisions; and change the dressing all on my backside on a daily basis. Forget about being modest! I lost my doctors at Tulane due to Hurricane Katrina. With my options very limited at the time, I was told to go to MD Anderson in Houston, TX. I have had a number of different type of treatments there, none have been successful! Since then I have suffered on a daily basis with chronic pain in my pelvic area. Horrible nerve pain in my right leg from possible nerve damage from surgery or tumor pressing on nerves. I have made numerous emergency room visits due to the excruiating and unbearable nerve pain which made me unable to sit, stand, or lie down! The only thing that took the pain away was IV Dilaudid. My right foot is practically numb all the time now. I'm on so much medicine that the side effects are unbearable sometimes. Side effects are muscle and bone aches and pains, fever, dizziness, can't think or see clearly, nausea, vomitting, stiffness in pelvic area, depression, extreme fatigue, and headaches. You name it, I got it! I stay sick and feeling bad all the time! I now can no longer have children anymore. Last year I had the Essure procedure done to permanately block my tubes to prevent me from accidently getting pregnant. Pregnancy would only harm everything I worked so hard to fix. Not to mention all the medicines I'm on could harm the fetus. Not an easy decision but I had no choice. I hate not being able to give my husband that big family he always wanted. My wonderful, caring, and loving cousin agreed to be a surrogate for us but insurance doesn't pay a dime with anything associated with fertility, so it's all out of pocket! We still don't know what to do about that till this day! I never know how I will feel each day I wake up. I only have a few good days so I try to make the most of them. It is so hard to smile anymore! I have so many people praying for me to be healed. Everyone tells me that things happen for a reason and that God works in mysterious ways! I hope God will heal all of us that are suffering and return us to the healthy and painfree lives we all onced had!! I thank God for giving me such a wonderful, supportive, and loving family to help me through all of this!! I could not have come this far without all of them and their love!

Thank you for reading my story!

How do GCTs affect you?

GCT patient

Location of primary tumor:

Sacrum and Right Hip Bone

Date of diagnosis of primary tumor:

October 2004

Treatment of primary tumor:

1. Curettage and Bone Reconstruction with 2-11" rods, about 8 screws, and plates all holding me together
2. Interferon Injections (since June 2007-present) and Zometa Injections (since January 2009-present)
3. Embolization Treatments once a month for about 2 1/2 years, was stopped in January 2009 because it was not working
4. Medicines include Dilaudid - pain, Oxycontin - pain, Lyrica - nerve pain, Lexapro - depression, Zofran - nausea, Ferrex - iron, Provigil - energy, and (new pain med Nucynta - makes me too sleepy so only take at bedtime)
5. Pain Stimulator implanted in January 2008
6. Physical Therapy

Facility treated at for primary tumor:

2004 - Tulane Medical Center / 2006-present - MD Anderson Cancer Center

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

NO! Tulane - I lost my wonderful doctors due to Hurricane Katrina! MD Anderson - These doctors may work miracles for others but all they did was aggrevate me by not returning any of my phone calls, never discussed my situation with me, nor found a solution that worked. The only thing these doctors did was make my life more miserable than it already is! I am switching to another hospital and all new doctors! What a relief!

Recurrence? If so, where?

All of the tumor was not removed during surgery. I lost 6 liters of blood so the surgery was stopped and they closed me up with that monster still inside of me!

Metastasis? If so, where?

No, thank God!

Tumor free?

NO!

Current GCT Status:

Stable in one area that has not grown, but an increase in size in another area.