radiantquest
Ideal_Rock
- Joined
- Jul 20, 2008
- Messages
- 2,550
DH has a desmoid tumor. For anyone that isn't familiar with it, it is a tumor that decides to grow inside a muscle. It is considered a benign cancer. It is very aggressive in that it grows like a weed and if you remove it there is a very large chance that it will return with a vengeance.
I may have mentioned before about his tumor. It is in his upper right arm. We went to specialists and doctors and their suggestion was chemotherapy. He did weekly treatments of chemotherapy for about 18 months. He has a port in his chest to take the IV medications directly into his largest veins that will circulate it quickly. Yes, it kept it from growing and maybe even shrank, but only by <1mm a month. He was incredibly sick, forced to keep working and damaged some major organs. All in all we decided that it wasn't worth it for his quality of life. The treatment was worse than the tumor. The only other thing our doctor was willing to do was remove it. If we remove it, they would also remove a large amount of the muscle surrounding it. This would leave poor DH permanently disabled. He would no longer be able to move his elbow from his side and wouldn't even be able to use his wrist correctly.
It has been growing and we have been doing research into other treatments. Some advancements have been made in curing desmoid tumors. One of the promising drugs is nefopam. From what we can tell it is used in nearly every other country, but isn't approved by the FDA in America therefore we cannot get it as of now.
Are there any members here that know anything about nefopam. DH is considering trying to get it off the internet, but that scares me. Has anyone ever taken it? What are the side effects? Any scary cases where something tragic has happened from taking nefopam?
I may have mentioned before about his tumor. It is in his upper right arm. We went to specialists and doctors and their suggestion was chemotherapy. He did weekly treatments of chemotherapy for about 18 months. He has a port in his chest to take the IV medications directly into his largest veins that will circulate it quickly. Yes, it kept it from growing and maybe even shrank, but only by <1mm a month. He was incredibly sick, forced to keep working and damaged some major organs. All in all we decided that it wasn't worth it for his quality of life. The treatment was worse than the tumor. The only other thing our doctor was willing to do was remove it. If we remove it, they would also remove a large amount of the muscle surrounding it. This would leave poor DH permanently disabled. He would no longer be able to move his elbow from his side and wouldn't even be able to use his wrist correctly.
It has been growing and we have been doing research into other treatments. Some advancements have been made in curing desmoid tumors. One of the promising drugs is nefopam. From what we can tell it is used in nearly every other country, but isn't approved by the FDA in America therefore we cannot get it as of now.
Are there any members here that know anything about nefopam. DH is considering trying to get it off the internet, but that scares me. Has anyone ever taken it? What are the side effects? Any scary cases where something tragic has happened from taking nefopam?