Alsky
09-05-2008, 08:56 AM
Hello,
I am so happy to have found this forum. My father was diagnosed with Wegener's in June, 08. He is 65. He had complications with his lungs (coughing up blood), kidneys, and some skin problems. He lives about 1.5 hrs from Duke so we are lucky that we had access to such a good hospital. He became part of a clinical trial and went on Rituximab (Rituxan) and prednisone. Things seemed to be going well--they said he was an "early responder." But--his kidneys have been getting worse over the past month and they have now switched him to Cytoxan. He has been on Cytoxan approx. 3 weeks. He went to the Dr. today and his kidneys (creatinine) are only getting slightly better. Creatinine was around 6 at the high point and down to 5.1 today I think. He's been very anemic since January, and although his hemoglobin was up to 10.8 last week, it was 8.5 this week. He is very upset and depressed and feels like this treatment is not working and assumes (maybe correctly) that this is the last treatment option (b/c he already did rituxan).
So...my father is not the type to seek out support or even learn about his disease. He is a manual laborer and works very hard. He has slowed down some but he owns his own business and he either has to keep going, or close his business--tough decision. I can't seem to find anything on line about how long it takes for Cytoxan to start working and start seeing results.
I am his advocate but I live two hours from him and 3.5 hrs from Duke. I work full time so it is nearly impossible for me to go with him to every Dr.'s appointment--but I do try to go sometimes. Admittedly, I haven't read through the info on this forum very much yet, but I am interested in anything and everything that you may want to share. Thank you!
I am so happy to have found this forum. My father was diagnosed with Wegener's in June, 08. He is 65. He had complications with his lungs (coughing up blood), kidneys, and some skin problems. He lives about 1.5 hrs from Duke so we are lucky that we had access to such a good hospital. He became part of a clinical trial and went on Rituximab (Rituxan) and prednisone. Things seemed to be going well--they said he was an "early responder." But--his kidneys have been getting worse over the past month and they have now switched him to Cytoxan. He has been on Cytoxan approx. 3 weeks. He went to the Dr. today and his kidneys (creatinine) are only getting slightly better. Creatinine was around 6 at the high point and down to 5.1 today I think. He's been very anemic since January, and although his hemoglobin was up to 10.8 last week, it was 8.5 this week. He is very upset and depressed and feels like this treatment is not working and assumes (maybe correctly) that this is the last treatment option (b/c he already did rituxan).
So...my father is not the type to seek out support or even learn about his disease. He is a manual laborer and works very hard. He has slowed down some but he owns his own business and he either has to keep going, or close his business--tough decision. I can't seem to find anything on line about how long it takes for Cytoxan to start working and start seeing results.
I am his advocate but I live two hours from him and 3.5 hrs from Duke. I work full time so it is nearly impossible for me to go with him to every Dr.'s appointment--but I do try to go sometimes. Admittedly, I haven't read through the info on this forum very much yet, but I am interested in anything and everything that you may want to share. Thank you!