Giant Cell Tumor Network
-
Julia
- Female
- Chino Hills, CA
- United States
- Share
- Blog Posts
- Discussions (4)
- Groups
- Photos (2)
- Photo Albums
Julia's Page
Gifts Received
Julia has not received any gifts yet
Latest Activity
These images are looking up at Marjie's lungs from her toes. The large mass is her heart. The smaller mass to the bottom right is the largest tumor; other small dots are also tumors. This tumor shrinkage is the result of a wonderful drug -- Denosu...
Profile Information
- About Me:
- I am the mother of a GCT patient. My daughter, Marjie, was initially diagnosed at age 13, in June 2003. She has had multiple recurrences, followed by metastases to the lungs. She has been involved in Amgen's Denosumab trial since January 2008.
- How do GCTs affect you?
- Family member of GCT patient
- Location of primary tumor:
- Left proximal tibia
- Date of diagnosis of primary tumor:
- June 2003
- Treatment of primary tumor:
- Resection and replacement with bone cement
- Facility treated at for primary tumor:
- Kaiser Permanente, Baldwin Park, CA
- Would you recommend this facility and it's Doctors to another GCT patient?
- Yes
- Recurrence? If so, where?
- Same location: Left proximal tibia
- Date of recurrence:
- December 2003 and June 2004
- Treatment of recurrence:
- 2 recurrences: Resection and replacement with bone cement
- Facility treated at for recurrence:
- Kaiser Permanente, Baldwin Park, CA
- Would you recommend this facility and it's Doctors to other GCT patients?
- Yes
- Metastasis? If so, where?
- Lungs
- Date of metastasis discovery:
- November 2007
- Treatment of metastasis:
- No treatment initially; began denosumab clinical trial two months after diagnosis.
- Facility treated at for metastasis:
- Sarcoma Oncology Center, Santa Monica, CA -- Dr. Sant P. Chawla
- Would you recommend this facility and it's Doctors to a fellow GCT patient?
- Yes
- Tumor free?
- Not yet
- Current GCT Status:
- Continuing treatment with Denosumab
Julia's Photos
© 2009 Created by Heather on Ning. Create a Ning Network!
Comment Wall (9 comments)
You need to be a member of GCT Connect to add comments!
Join this Ning Network
We were at the doctor yesterday and I asked about the 1 vs 2 shot dose. I was told that the in the first phase (obviously the one Marjie is in) it was formulated to be given in 2 injections. It has since been reformulated so that it is the same actual dose, but can now be administered in 1 injection.
Even though I had too many nodules to count scattered throughout all of the lobes of my lungs I was supposed to just have a wedge resection on the nodule that had tripled in size. The others were basically stable at that time. When that nodule came back containing GCT they decided to check another one just to make sure we were dealing with all the same thing. The other nodule did not actually contain GCT but it was ossified (made of bone). The pathologist felt this could possibly be a regressed GCT.
There seems to be varying opinions from the numerous Drs. I have seen since whether this is a regressed GCT or not. However since then I have read about other cases where this happens sometimes.
A VATS wedge resection removes wedge shaped pieces of lung tissue and only requires 3 small incisions. The surgeon uses a scope in one of these incisions to visualize what he is doing. Another incision is used to put the instruments in to actually remove the nodules and the last incision is where they put the chest tube in afterwards to reinflate your lung. When they intubate you they use a double lumen endotracheal tube rather than the normal single lumen. This way they can deflate the lung on the side they are operating on. The recovery from VATS is much shorter than having an open thoracotomy wedge resection.
The worst part about the surgery was that it affected the nerves in my chest and back postop. These nerves would misfire sometimes and cause terrible muscle spasms that were terrible. Thank God that no longer happens but the nerves are permanently affected. However now it is just a weird itchy feeling deep inside yet the area is numb when you touch or scratch it. I'll take that anyday though over what it used to be like. Hope that answers your questions and sorry it was such a long explanation.
Let me know Marjie's next scans show.
Those scans are amazing. What an incredible difference!! I hope the new scans this week show continued improvement. When she was accepted in the trial did they make her have pulmonary wedge resections done and how much in advance had they been done?
I, too, am a mother of a GCT patient. My daughter Ilana was diagnosed with GCT of the sacrum in July. Since then she has had surgery, cyberknife radiation, and is now also part of the Denosumab clinical trial. I certainly appreciate you sharing your pictures. I find it interesting, however, that your daughter receives her doses as 2 injections into her stomach. My daughter gets it as 1 injection into her arm. I wonder why the different protocol. Any thoughts?
Diane
Thanks for the quick response. I am glad that your insurance has been so great. Ours has been a nightmare. Next time I go to MDACC in Houston I am going to bring info on Denosumab to my oncologist. I talked it over with my local oncologist this past week and he thinks it sounds encouraging but feels I should really give Interferon the full year before trying something else. He also thought based on the reqirements Amgen printed that I would need another biopsy to prove metastatic GCT since it has been just over a year since I last had wedge resections done on my lungs.
You asked about Interferon side effects. Actually they are much milder than I expected but they include headaches, mild muscle aches, weight loss and gum problems. The biggest issue that concerns the oncologists is how low my platelets have dropped. They have gone down to less than 50. Because of this I have weekly CBC's done before I can give myself a dose and they have greatly reduced my dose from what it originally was.
Did they say how long your daughter will need to stay on the Denosumab?
The news concerning Denosumab is so encouaging. I hope that the other people on here about to start it have the same results. This could really be an answer to so many people!
I also had a GCT in my left proximal tibia and now have too many pulmonary nodules to count. I started Interferon treatment in November 2008 at MD Anderson Cancer Center. I wish they were participating in the Denosumab trial but they aren't. It has been more than a year since I last had a biopsy to prove I have GCT in my lungs but I saw that Amgen wants pathology proof within less than a year of GCT. I was also wondering since your daughter participates in a clinical trial is the Denosumab provided at no cost and are the cost of CT's to monitor her condition included in the trial. The cost of Interferon is ridiculously high so I am very interested to learn all I can from those in this trial. Thanks for any info and I am so glad your daughter is responding so well to teatment!