Brooke
09-20-2010, 06:25 AM
Hi,
I had appointments at Mayo clinic last week, Wednesday through Friday. My CT of my chest improved, my sinuses improved (ENT said there was one tiny spot that looked a little inflammed). My blood and urine tests were good, my B cells are still gone from my Rituxan I had in May. My pulmonary function test did not get worse but did not improve. Therefore my doc ordered a bronchoscopy while I was there. She said they were going to use a balloon or flexible laser treatment to open any scarring that they may see. Well they did see some scarring in my bronchial tubes, not trachea. Once they started to open that up they saw a lot of inflamation so they had to stop. I hated this bronchoscopy more than any other bronch I have ever had, this was my 4th one. I had a bad headache and nausia all day after. Friday was follow up with the doctor, she is putting me on a short course of steroids and nebulizer and more inhaled steroids and I am to go back in December and they are going to try and open this again. I said well what if there is still the inflamation? She said that wouldn't make her too happy and that might just show the Rituxan is not doing its job there and might have to try Cyclophosphamide. I started crying and she said don't cry, I don't even want to go there yet, we don't know if that is what you will have to do. Grrr... I am mad because my bronch wasn't worse yet it wasn't better as far as scaring so why do they need to open it up? Would the inflamation travel else where? I think that is what the dr is thinking. She also can not guarantee that the cyclophosphamide will work, so how many drugs do I have to try? All of them I guess.
Anyways, I am praying that the bronch looks better in December and then if so they will open it up and I will still do another round of Rituxan. She doesn't want me to do another round of Rituxan before then in case it doesn't work, then I would have put my body through that again for no reason.
Any thoughs, suggestions, opinions?
I still have some catching up to do on here:) I hope everyone is hanging in there.
I had appointments at Mayo clinic last week, Wednesday through Friday. My CT of my chest improved, my sinuses improved (ENT said there was one tiny spot that looked a little inflammed). My blood and urine tests were good, my B cells are still gone from my Rituxan I had in May. My pulmonary function test did not get worse but did not improve. Therefore my doc ordered a bronchoscopy while I was there. She said they were going to use a balloon or flexible laser treatment to open any scarring that they may see. Well they did see some scarring in my bronchial tubes, not trachea. Once they started to open that up they saw a lot of inflamation so they had to stop. I hated this bronchoscopy more than any other bronch I have ever had, this was my 4th one. I had a bad headache and nausia all day after. Friday was follow up with the doctor, she is putting me on a short course of steroids and nebulizer and more inhaled steroids and I am to go back in December and they are going to try and open this again. I said well what if there is still the inflamation? She said that wouldn't make her too happy and that might just show the Rituxan is not doing its job there and might have to try Cyclophosphamide. I started crying and she said don't cry, I don't even want to go there yet, we don't know if that is what you will have to do. Grrr... I am mad because my bronch wasn't worse yet it wasn't better as far as scaring so why do they need to open it up? Would the inflamation travel else where? I think that is what the dr is thinking. She also can not guarantee that the cyclophosphamide will work, so how many drugs do I have to try? All of them I guess.
Anyways, I am praying that the bronch looks better in December and then if so they will open it up and I will still do another round of Rituxan. She doesn't want me to do another round of Rituxan before then in case it doesn't work, then I would have put my body through that again for no reason.
Any thoughs, suggestions, opinions?
I still have some catching up to do on here:) I hope everyone is hanging in there.