Mona's Page

About Me:

Hi, my name is Mona and Im 25 years old! I have two kids, ages 3 and 1 year. Im currently not working right now due to the GCT's Ive had. I have been out of work 2 years now.

How do GCTs affect you?

GCT patient

Location of primary tumor:

San Jose, Ca USA

Date of diagnosis of primary tumor:

May 07'

Treatment of primary tumor:

I originally found out about the gct in my distal humerus, May 07'. It was a week before my first Mothers day and I felt like I had a pulled muscle in my left arm. Im not the one to run to the doctor so I put it off thinking my pulled muscle will get better.

Mothers Day 07' I was at Target getting a card for grandma with my daughter. We went to the car and when I tried putting her stroller in I tripped on the cement parking blocks. I didnt fall, just caught myself by holding the stroller and grabbing onto the side of the car. Just then I felt lots of pain in my arm and tingling throughout my body. I didnt know what was going on, I couldnt even hold up my cell phone with my left hand.

I went to grandmas house and told her what had happened and she made me a sling. I made an appointment for the following day. When I went in to take x-rays they saw a fracture in my left humerus and couldnt explain how I got it. They made me an appointment for a MRI and thats when they saw it. It was a tumor! The doctor at that facility couldnt tell me what kind of tumor so she had to send me to a specialist.

Two weeks later I met with the doctor that would change my life, Dr.Fang. He explained to me that he would have to perform a biopsy to see what kind of tumor it was. The biopsy was done in mid June 07' and I had a surgery to remove it in July 07' and another surgery to put in a metal rod and metal shoulder joint in August 07' (right on my birthday). I was in the hospital for about 3 days then released.

I went for a follow-up and a month later (Sept. 07') found out I was pregnant........

Facility treated at for primary tumor:

South San Fransisco Kaiser Permanente-Dr.Fang

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

My tumor Specialist YES!

Recurrence? If so, where?

yes, humerus

Date of recurrence:

January 08'

Treatment of recurrence:

I couldn't have any x-rays done since I was pregnant and it wasn't safe to do until I was in my 3rd trimester. So when I was about 6.5 months pregnant they did an x-ray and found that the tumor had come back (I kinda knew it was back because it hurt alot, it would throb). The doctor DID warn me not to get pregnant but I didnt know how serious this was. We waited two weeks then on April 1st I was induced. I was given steriod shots in my hips to help my sons lungs develop and then had my baby April 3rd.

Two weeks later I had to leave my new born baby to go in and have surgery done on my left humerus and shoulder. I was in the hospital a week because of the longer than expected surgery and blood loss. I had to have 6 pints of blood back into me. That was the worst surgery ever, I suffered alot.

Then to make matters worse, in recovery the doctor came and told me that I wouldnt be able to move my left hand ever because the tumor had ate at one of the main veins going to my hand. I was devastated. But at the same time he was explaining the whole thing, I was moving the hand he told my I would never be able to move. IT WAS A MIRACLE! He couldn't expain how I was moving it since he was sure what he cut.

Eight months later in December 08' I thought I was fine and out of the woods. I started going to school and only a month into school I started noticing a small lump on my shoulder which had never been there before. It didnt hurt It was just there getting bigger. I went in and talked to my doctor and he said it could be another reaccurance in the muscle this time. I went for an MRI and he was right, It was a GCT in my muscle. I went and had it removed in January 09'. The procedure was real quick and I was back home the same day.

I went in to see my doctor for a follow-up a month later and he did an x-ray of my chest (like always). He called the next day to tell us that he saw something in my lungs...........

Facility treated at for recurrence:

South San Fransisco-Dr.Fang

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

yes

Metastasis? If so, where?

Yes, In my lungs

Date of metastasis discovery:

February 09'

Treatment of metastasis:

Dr. fang said he thinks it might be the tumor in my lungs but he wasn't sure. He scheduled a cat scan and referred me to a lung specialst. I had my scan done and went to see Dr. Zhu. She told me what I DIDN't want to hear.

I had about 16 tumors in both lungs and they are about 6 millimeters each. They cant do anything right now because they are so small. She wants me to wait 3 months then have another cat scan done to see if they go away or get bigger.

May 13th I had another cat scan done and Dr.Zhu called me right away to tell me the results. They've grown to 9 millimeters each. They are still too small to have a biopsy done. So I have to wait another 3 months then have another cat scan so nothing yet.....just watching and waiting!

I just changed my doctor because I thought waiting another three months was too much time to spare. I have a new doctor at Kaiser and so far she is awesome. She doesn't waste any time and knows the seriousness of GCT's. She is refering me to Dr. Sant Chawla out in Santa Monica (7 hours away) to join trial and start injections on Denosumab.

I had my first injection finally yesterday (June 18th). I need to go back next Thursday for my second one.

Its now November 9th and Ive been on the Denosumab trial for about 6 months. The cat scans have shown some shrinking of the tumors, not sure how much but anything helps. I have another scan scheduled for next week. I will see whats happening in there soon!

Facility treated at for metastasis:

Santa Monica Sarcoma Oncology--->Dr.Chawla

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

YES

Tumor free?

NO!

Current GCT Status:

Currently in my lungs