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James
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- Woodstock, GA
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James's Discussions
Good news and the bad news
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Started this discussion. Last reply by CAROL Nov. 3, 2008.
James and the Giant Tumor
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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…
Well, on the 17th I'm off to Washington DC for the Denosumab clinical trial. Its at the Washington Cancer Institute. I fly in around 11am and back out around 6pm. Short trip. I was told the first visit is a "getting to know you" kind of thing. They…
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- About Me:
- I had a Giant Cell Tumor, (GCT), removed from my femur in 2004. GCT had spread to both lungs with 100's of tumors present. In late 05 and early 06, I had lung wedge resection surgery to remove 65 tumors from both lungs only to have more tumors show up within five months. Did one year of Peg-intron Alpha 2b shots for a year with no results.
UPDATE: As of March 2009 I have been lucky enough to participate in a clinical trial using the new drug from Amgen called Denosumab. It is too early to tell if I will benefit from it but I am praying it works for me.
- How do GCTs affect you?
- GCT patient
- Location of primary tumor:
- distal end of femur
- Date of diagnosis of primary tumor:
- July 2004
- Treatment of primary tumor:
- Surgery to remove primary from distal end of left femur
- Facility treated at for primary tumor:
- M.D. Anderson - Houston Texas
- Would you recommend this facility and it's Doctors to another GCT patient?
- YES. Dr. Valerie Lewis in Sarcoma Dept and Dr. Garett Walsh in Thorasic Dept.
- Metastasis? If so, where?
- Lungs
- Date of metastasis discovery:
- Knew of a few spots in 2004. By 2005 the few became 22
- Treatment of metastasis:
- In November of 2005 Dr's preformed Wedge Resection surgery on the left lung thinking they would find 11 or so tumors, they found 27. In January 2006 they did the right lung, again thinking they would find a dozen or so, they removed 39. At a five month check up they informed me many tumors were now present and it was to early to try another surgery. So I was then put on chemo, one year of Peg-intron Alpha 2b injections. A few weeks after I completed the year long injections, I was told the treatment did not work and they had no other treatments for me. So in July of 2007 I was told to get my affairs in order. My life expectancy was 12 to 18 months. Well Christmas of 2008 came and went. As of May 2009 you would never know I had cancer by looking at me. Feel pretty good right now.
- Facility treated at for metastasis:
- M.D. Anderson
- Would you recommend this facility and it's Doctors to a fellow GCT patient?
- Yes
- Tumor free?
- No
- Current GCT Status:
- Terminal, as of July 2007 I was told I have 12 to 18 months to live. Time to get a new doctor : )
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James's Blog
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
Posted on September 16, 2009 at 1:00pm — 9 Comments
Off to Washington DC for the Denosumab clinical trial
Well, on the 17th I'm off to Washington DC for the Denosumab clinical trial. Its at the Washington Cancer Institute. I fly in around 11am and back out around 6pm. Short trip. I was told the first visit is a "getting to know you" kind of thing. They tell me they will collect my information and send it to Amgen for consideration. (WHAT?) Either you have GCT or you don't. I have already sent them numerous CT scans, biopsy reports and actual slides of the tumor. I guess they want to see if I'm funny… Continue
Posted on February 10, 2009 at 8:18am — 13 Comments
Denosumab - Demonstrated 87 Percent Response Rate in Giant Cell Tumor of Bone
What may be the miracle drug we have all been waiting for might finally be here, in our lifetime. Denosumab, made by the drug company Amgen has been in clinical trail for awhile now and is showing a great response rate. You may have recently read Quintons latest blog where he is now in this clinical trial.
Back in April when I first discovered the trial in a media post, the trial was not open to pulmonary disease. After a rather simple effort to get the drug manufacture to open this trial to pe… Continue
Back in April when I first discovered the trial in a media post, the trial was not open to pulmonary disease. After a rather simple effort to get the drug manufacture to open this trial to pe… Continue
Posted on December 15, 2008 at 10:04am —
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Did you have a biopsy in the last year before starting Denosumab? Right now that is my major hurdle with my insurance.
The research nurse in Pennsylvania also told me that Univ. of Fl. has been asked to participate. I have been in communication with them as well but they have not made their final decision. If they were a trial site though I would be only a 2.5 hour drive away. So right now I am trying to get into the trial but running into some obstacles with insurance so I would love to hear if they made you have a biopsy again and if so what type did you have.
Take care and good luck with the trial. I really have positive feelings that you are going to see a favorable response on your next scans.
I just wanted to check in and see how the Denosumab is going for you. Hope you start to feel better soon.
I am a little discouraged today because I am back on daily CBC's again. My platelets have been dropping lately and seem stuck in the 40's this week. Did you have this problem when you were on Interferon and how often did you have bloodwork done while on therapy? The manufacturer of PegIntron says technically the drug is supposed to be permanently discontinued if platelets fall below 50 but so far we just hold doses and do daily CBC's.
I hope your second injection was uneventful this week and everything is going well with you. Oh I also saw what you wrote about not having pictures on our profiles. I don't think anyone is worried about predators but in my case and maybe for others I know I hate to have my picture taken. I avoid a camera whenever possible but I'll try to get a picture up sometime if I can find a decent picture.
I have a question. Do you have to pay for the Denosumab? I am assuming since it is a clinical trial that the medication is free. I have really been thinking a lot about the trial. I looked at the requirements for it and you can not currently be undergoing any other treatment but I do not know how long you have to be off other treatment. I have 8 more months of PegIntron to go if I stay with it. I have an appt. with my local oncologist tomorrow and I am going to ask his opinion about switching. I kind of worry what if Denosumab is not effective for as many other conditions as they hoped but is for GCT. Then it may not be profitable for them to make it for such a small group. I've read mixed results about its effectiveness in other conditions.
Did your insurance cover your PegIntron and did you go somewhere for the shots or self administer? Sorry I keep asking you so much but our cases seem to be the most similar. It is also kind of unusual for us to have the metastases since neither of us ever had a recurrence. Some luck, huh? I am just grateful that mine has been as slow growing as it has been though MDACC just sent me my Chest CT report and according to the radiologist it grew more than what Dr. Ludwig thought. Usually they have the radiologist report when I am there but for some reason last time it had not yet been read so they were just looking and comparing themselves. Thanks for any info you can give me. I will really be paying attention to your case and I truly wish you the best of luck with this trial.
Mary
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