Giant Cell Tumor Network
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 trial sites apparently in order to get more data but apparently not many clinics are wiiling to participate because of a lack of patients who meet the criteria). Well to make a long story short, at the last moment there was a disagreement between the legal people at my local oncologist's office and Amgen over some wording and they decided not to participate in the trial.
There were also difficulties in getting a new lung biopsy done since mine was older than a year old and Amgen requires one less than 12 months old. The doctors went back and forth on which biopsy method to use because apparently I have a lot of scar tissue from my past VATS and my nodules tend to be very vascular and the thoracic surgeon felt like I also needed to have a repeat PET Scan done again. I finally ended up with a CT guided needle biopsy in my left lung and they fortunately got plenty of giant cells. By the way any of you considering this form of biopsy should know it is so much easier than VATS. I had a small collapsed lung afterwards but it did not even require a chest tube and it was almost a pain free procedure. However many times they can not get a diagnostic sample with this method and that is why they were hesitant to do it this way.
Then I had to wait to get another appointment in Philadelphia but it has finally all come together. I will be making a lot of trips between Florida and Pennsylvania but if Denosumab works it will be worth it. The air fares will still be cheaper than the PegIntron which cost me $2000 a month!
There were also difficulties in getting a new lung biopsy done since mine was older than a year old and Amgen requires one less than 12 months old. The doctors went back and forth on which biopsy method to use because apparently I have a lot of scar tissue from my past VATS and my nodules tend to be very vascular and the thoracic surgeon felt like I also needed to have a repeat PET Scan done again. I finally ended up with a CT guided needle biopsy in my left lung and they fortunately got plenty of giant cells. By the way any of you considering this form of biopsy should know it is so much easier than VATS. I had a small collapsed lung afterwards but it did not even require a chest tube and it was almost a pain free procedure. However many times they can not get a diagnostic sample with this method and that is why they were hesitant to do it this way.
Then I had to wait to get another appointment in Philadelphia but it has finally all come together. I will be making a lot of trips between Florida and Pennsylvania but if Denosumab works it will be worth it. The air fares will still be cheaper than the PegIntron which cost me $2000 a month!
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Comment by Mary on November 3, 2009 at 5:58am -
Hi Julia,
I have had my first 3 treatments so far. Somewhere around the end of December I will get a CT done and hope that my rsults are as positive as what everyone else is reporting. I am so happy your daughter has responded so favorably. Are her nodules still continuing to shrink or are they just pretty much stable?
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Comment by Julia on November 1, 2009 at 1:32am -
Hi Mary...
Have you begun the Denosumab treatment yet? My daughter Marjie has been on it for almost 2 years now and has continued to make progress, as determined by a PET/CT scan that is done every 3 months. We have Kaiser Permanente insurance and haven't had to pay anything for her treatment. The office where we go is only about 1-1/2 hours away, so we are fortunate to not have to pay airfare.
I know you haven't had any scans yet, but keep us posted as to your progress!
Sincerely,
Julia Tavis
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