Blogs - GCT Connect

Uncontrollable Tumors for Corey

Hello to all and thank you for all the prayers for Corey. I brought him back to the hospital November 5th for his hip bed sore and both heels. With no appetite and weight loss, the sores aren't healing well. Arrangements are made to hospitalize for antibiotics and nutrition and blood transfusion with a hemoglobin at 6.0. Two units prior to the 5th, 1 unit the day of admission...2 days later his count was back down to 6.4. CT-scans were done..neck to pelvis...we got news on Tuesday morning, Nov 1… Continue

Added by susan on November 13, 2009 at 3:26pm — 5 Comments

Second Post Surgery

Saw the doc again today for my second post surgery appointment. Everything looks good, but he did get on to me a bit about my activity level, told me to town it down a bit for while. I guess there was more swelling than he thought there should be. I go back in 3 months for a follow up. He said everything looked good, no more tumor! Continue

Added by John N. Montgomery on November 5, 2009 at 7:46pm — No Comments

GCT in Sacrum

My daughter is 22 years old and has just recently been diagnosed with a Giant Cell Tumor in her sacrum. Just curious if anyone with the same diagnosis has had their surgery at Vanderbilt Orthopedic Institute? Continue

Added by Pam on October 28, 2009 at 2:36pm — No Comments

Denosumab trail started

I started my denosumab trail this week, was quick, just one quick shot. they kept me for extra hour for monitoring. i had a slight headache and dizziness for first hour. i was able to goto work that day, i had a light headache threwout the day. i was fine the following day. i will be going for my nxt shot next week, will keep you posted. Continue

Added by Bryan on October 21, 2009 at 9:00pm — 2 Comments

Clinical Trial is up next.

Corey finished his last set of chemo treatments and had scans which showed increased activity in the pelvic/sacrum tumors. We are waiting to hear of the date for the clinical trial. There are a few but which does he qualify for, we'll find out. The tumors cause nausea...I am giving him home infusions of Zofran..and sweating. Corey sleeps alot due to the pain meds he is taking. The nurses say they have never seen a patient on such high doses. Will let you all know what & when....I promise! Ta… Continue

Added by susan on October 18, 2009 at 8:15pm — 2 Comments

Post Op Check Up

About a week ago on 10/6 I went in to see my Doc for my Post Op/Post PT check up. They took a few new Xrays and measured the angles my thumb can bend to now. After a few trys my Xrays came turned out well (the tech said they seem too dark because of the loss of bone density in my hand so I always have to get them redone) my doc checked them out and said everything looks great, no signs of regrowth and my bone graft fused well. At my last appointment he mentioned to bring a flash drive to the nex… Continue

Added by Nikki Wegman on October 14, 2009 at 1:22pm — No Comments

Surgery Follow Up

Had my first post surgery follow up appointment on Thursday, October 8. Everything looked great, the pathology report on the tumor was good, benign giant cell tumor. Lung xray was good. I am off of the crutches now, yeah! I go back in a month and the doc says he will probably release me to normal activity then, hopefully meaning I cant start running again. He says I will need to wait 6-9 months before I try to snow ski or play rugby.... That is all... Continue

Added by John N. Montgomery on October 9, 2009 at 11:48pm — No Comments

post radiotherapy scan

MRI Scan clear no sign of tumour ,small area they saw after the radiotherapy gone completely. Re scan in one year unless symptoms return . Now to get on with LIFE x Continue

Added by caroline on October 2, 2009 at 2:29pm — 3 Comments

I am finally in the Denosumab trial!

I just heard news today that I am finally in the Denosumab trial. I have been working towards this goal for months now. First I went to the Philadelphia site back in June where they said I was a perfect canidate for the trial but then it appeared that my local oncologist's office was going to become a trial site very soon and Amgen said sometimes there could be difficulties in changing sites so they suggested I wait until the trial was up and running locally. (Amgen is actually looking for more… Continue

Added by Mary on September 25, 2009 at 10:02am — 2 Comments

TODAY TRULY IS THE FIRST DAY OF THE REST OF MY LIFE !!!!!!!!!!!!

Well after waiting 16 days for the results (oh the misery of not knowing), I got the call today. And GREAT NEWS!! I AM BENEFITING FROM AMGEN'S DENOSUMAB INJECTIONS!!!! I was told today that my largest tumor in my right lung which did measure in at 7.6cm in December 2008, now measures at 6.8cm. The largest in my left lung was something like 6.4cm and is now under 6cm. I also have several tumors measuring less than 1.0cm and it appears all tumors have had some response to the treatment with some o… Continue

Added by James on September 16, 2009 at 1:00pm — 8 Comments

I went to Duke No tumor return in 3 months. Walking without crutch no pain 95% back

I went to Duke No tumor return in 3 months. Walking without crutch no pain 95% back Continue

Added by CAROL on July 20, 2009 at 5:48am — 2 Comments

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

Added by Quinton on July 8, 2009 at 2:28pm — 4 Comments

I am doing great!!!

Hi Everyone!!! I hope everyone is doing relativly well!! well its been nearly 5 months since surgery and i am doing really well.. no pain!!! well not as bad as it was :-) for my last checkup went to the joint replacement assesment clinic she did some measurements and that 2cm difference in my leg length still.. but i dont feel any different..surgeon happy! i was only on crutches for 1 month..well it was a little hard with a baby and child to look after.. ummm.. go back to see my surgeon in au… Continue

Added by Dolina on July 6, 2009 at 12:06am — 2 Comments

New to the group, here is my story

I was first diagnosed with a GCT on 2/12/2009 about a month after my 21st birthday. I had waited a very, very long time to go to see a specialist. When I was 17 I was in a vehicle accident that injured my left hand that later resulted in surgery so I accredited my problems to my prior surgery, I didnt think the first specialist I saw helped very much at all. Shortly after my first surgery (a few years after my accident) I became pregnant with my son. I had my son Feb 23rd of 2008. When he was ab… Continue

Added by Nikki Wegman on June 22, 2009 at 1:23pm — 1 Comment

Heading to Philadelphia for Denosumab pretrial appointment

I recently returned home from M.D. Anderson Cancer Center in Houston. Unfortunately after 7 months treatment with PegIntron, there is no sign of regression or calcification in my lung metastases. The small nodules which are too many to count are stable but the largest one continues to grow throughout treatment. My oncologist wants me to get in the Denosumab trial so I am headed to Philadelphia next week for an appointment with Dr. Staddon. If I can't get in the trial the other possible options a… Continue

Added by Mary on June 15, 2009 at 4:00pm — 3 Comments

Please keep Corey in your prayers

On May 15, 2009 Corey was admitted to the hospital for severe cronic pain in the back of both thighs/knees. Within 2 days he had new MRI & CT Scans which showed that the tumors had taken over since mid February 2009, growing larger on the sacrum (which is pressing against the siatic nerve causing the pain) and liver. New tumors located on the pelvic bone and tissue. So he has stopped the Zometa (which was productive 2 years ago)and he has been on since February 2009. He is on new chemotherap… Continue

Added by susan on June 12, 2009 at 9:00pm — 8 Comments

KAISER PATIENTS>>>>>>FYI

If you get a referral from your doctor to go see another doctor for denasumab and its far, Kaiser will pay for your flight along with a companion, hotel and give you $50 a day for each of you. I didnt know and I was stressing off the expenses till someone told me this. If you choose not to fly they will reimburse you for the gas. They paid for my flight last week. They said to call them when I get my next appt. so they could book my next flights as well. FYI Continue

Added by Mona on June 11, 2009 at 9:41pm — 4 Comments

Im going to start Denosumab

I was referred to Dr. Shawla out in Santa Monica and went for my orientation this last friday. They got everything they needed from me including: blood, paper work and a physical. There was only one problem, my last ct scan (May 13th 2009) shows my biggest tumor at 9mm. In order to start the denosumab trial your tumor has to be at least 1cm. I was told to have my ct scan re-read and maybe it'll be at 1cm. Well I had a PET/CT scan done yesterday and got my results back today. My tumor is now 2cm!… Continue

Added by Mona on June 11, 2009 at 8:55pm — 3 Comments

Concerned and have a question...

Hello, I was 23 (12 yrs ago) when I had a GCT removed from my leg/knee. The tumor was removed and replaced with bone from my hip and pins. I was told that there is a correlation between the tumor I had and tumors in the lungs (which have been clear) however I was curious if it is common to have GCT return elsewhere in the body? I am having the same symptoms in my ankle that I had with my knee (on the same side as the surgery) and I'm concerned something may be wrong. I am obviously going to cal… Continue

Added by Nicole Cox on June 5, 2009 at 8:19pm — No Comments

Improving

I am doing well. I am happy almost pain free. Walking without the crutch or cane most of the time . I am 10 months post op now. The advil & physical therapy helped I am still going 3 x a week Continue

Added by CAROL on May 28, 2009 at 3:40am — No Comments

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