Since so many people have been asking us about Camryns experience with Denosumab, I thought it might be helpful to explain more about that here. First, some history of her disease. Camryn was diagnosed at age 6 with FD after a baseball sized tumor was found in her left maxilla. She had her first surgery at age 6. Her second and third surgery, she was 7. She had her fourth, fifth, and sixth surgery at age 11 (Phew! That was a tough year.) Her seventh surgery, she was 13. Her tumor grew very aggressively and was described in the physicians notes as massive in size. It crossed suture lines and invaded not only her maxilla, but her zygoma and orbit as well. She had tried Pamidronate (Aredia) with some success for pain, but it did not stop the growth. She had tried Zoledronic acid (Zometa, Reclast), with no positive result at all. This dang tumor just wanted to grow and grow. And with that, came a lot of pain. Then we tried Denosumab (Prolia, XGEVA). And it has been a Godsend! As I mentioned above, Camryn had her last surgery on December 18th, 2012 at age 13. She started the Denosumab on December 31, 2012. I was worried about giving the drug so close to surgery on her jaw since one of the side effects is jaw necrosis, but she was fine and healed without incident. For the first dose, she went to the Pediatric Oncology office and had her blood drawn for lytes, Bun, creat, calcium, and phosphorus. We waited for the result, and once we knew her labs were in the normal range, she received the injection (it is given subcutaneously). After that first dose, I have always given her the shots myself. I take her to the hospital to have her labs drawn. We wait for the result. Once we know they are ok, I give her the injection at home. She received 54 mg every 4 weeks for about 6 months. Then we increased the dose to 60 mg every 4 weeks, for a year. Then we increased to 70 mg every 4-6 weeks. She has received 23 doses so far. If your doctor is willing to try Denosumab, make sure they use the correct frequency for boney tumors. You see, denosumab is marketed and labeled for osteoporosis in older women/men and is given every 6 months for that diagnosis. For bone tumors and/or metastatic bone cancer, it is given every 4 weeks and often, at a higher dose than given for osteoporosis. Now Denosumab wasnt easy to get. It is a fairly new drug, only receiving FDA approval in the summer of 2010. It is expensive. Around $800/dose for Prolia. $1667/dose for XGEVA. Our medical insurance denied it. We appealed. They denied it again. We appealed again with evidence from the NIH of its effectiveness with boney tumors. They still denied it, the reason being that they did not cover experimental medication. We appealed again, stating that every medication is experimental at some point, and it would save them a lot of money if she had less surgeries (she had been averaging one a year). They denied us. We applied for assistance through The Safety Net Foundation. That is Amgens drug assistance program for patients that have no insurance or are under-insured. They accepted and we received the medication at no cost for the first year. The second year, we tried our insurance company again and they approved the medication! We have to pay the highest tier co-pay for each dose (which is a heck of a lot better than $1667!). We worried about side effects, but she really hasnt had anything major. She had some generalized bone pain at first, which was off and on for the first year or so, usually right after her injection and lasted a day or two. Nothing that ibuprofen couldnt fix. Now, she doesnt even have that. She does feel very tired after the injection. But what I do to counter that is I give her injection right before bed. By morning, she is fine. Now to the good part: her tumor which had been aggressively growing since we discovered it at age 6, is now the exact same size as it was two years ago (maybe even a smidgen smaller)! Since it hasnt grown, she hasnt had the pain that she was having before. She is leading a (relatively) normal teenage life. She looks amazing (especially compared to earlier years when she was very asymmetrical). And it has allowed us to be able to breathe. After so many years of being afraid to relax and breathe with this horrible disease, we can finally smile and be happy without worrying that if we do, something bad will happen. I know most of you know what I am talking about. It seemed as though every time we finally thought we were ok, a crisis would hit and she needed more surgery. We have been 25 months without surgery (and counting!) and I hope there will be many more. Now Im not completely delusional here. I know there could be some weird side effect that MIGHT happen. And I know that she could have some rebound growth if we ever decide to stop the medication. But isnt it worth the risk? She has gained 25 months of a pain-free existence so far. And we cant be paralyzed by the fear of what MIGHT happen. Doing nothing certainly wasnt working. Now we are doing SOMETHING. And its working so far. I wanted to share this with all of our FD Warrior friends so you could hear first-hand of a good experience with this drug. Have any others tried Denosumab? Please share your experience with us! Also, feel free to share this post with anyone that you think might benefit from this information. Please let me know if you have any questions about the drug, dosing, frequency, labs, insurance issues, etc. This page was created to raise awareness, so we are more than happy to help however we can. Please like and share the page with friends and family so others can hear about FD! Thank you from the bottom of our hearts for your continued prayers and well wishes! We are not alone fighting this disease and our family gains strength from hearing from all of Camryns supporters. Thank you!
Posted on: Thu, 15 Jan 2015 01:49:03 +0000
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