Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Crew, I have been out of the house for most of the summer, going on vacation and then to various appointments, etc.... I am VERY behind on checking crew mail, and have not read most of what has been going on. I did read Donna's post about perfinidone, however, and asked my neuro about it. His reply follows. Good news for NF1 people, anyway.... Nate , Here is what I have found out. Please let me know if you learn more. thanks, B. Forwarded Message [ Save to my Yahoo! Briefcase | Download File ] Date: Wed, 31 Jul 2002 14:37:17 -0500 From: " Bowers " To: " Bruce Mickey " , " Eugene Frenkel " , " Fink " , " Roland " Subject: Re: Pirfenidone Plain Text Attachment [ Save to my Yahoo! Briefcase | Download File ] Bruce, Pirfenidone is a new drug with anti-collagen activity that is being evaluated for several potential uses, including uterine fibroids, pulmonary fibrosis, and plexiform neurofibromas. Dr. Dusica Babovic from the Mayo Clinic has published an article of a single patient with neurofibromatosis type-1 who had a plexiform neurofibroma shrink by 30% after treatment with Pirfenidone. Based on this success, the Mayo Clinic currently has a phase II trial of Pirfenidone for plexiform neurofibromas. See this website: http://www.nf.org/clinical_trials/nf1/spinal_neurofibroma/A_Phase_II_Clinical_Tr\ ial_of_Pirfenidone_for_the_Treatment_of_Patients_with_Neurofibromatosis_Type_I.h\ tm Currently, the NCI will soon start a pediatric trial of Pirfenidone for Plexiform Neurofibromas. I have attempted to get UT Southwestern included as a study center, but have thus far been unsuccessful in my attempts. I am not aware of Pirfenidone having any activity against tumors in patients with NF-2. But, it probably wouldn't hurt to inquire. I hope this helps. Dan C. Bowers, MD Department of Pediatrics MC 9063 UT Southwestern Medical School 5323 Harry Hines Blvd. Dallas, TX 75390-9063 tel: fax: __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Nate...I have plexiform firbromas on my head and they have grown. This actually could help NF2 patients. I am running this off to take to my neuro. Thanks. Carol Re: Pirfenidone > > > > Plain Text Attachment [ Save to my Yahoo! Briefcase | > Download File ] > > Bruce, > > Pirfenidone is a new drug with anti-collagen activity > that is being > evaluated for several potential uses, including > uterine fibroids, > pulmonary fibrosis, and plexiform neurofibromas. Dr. > Dusica Babovic > from > the Mayo Clinic has published an article of a single > patient with > neurofibromatosis type-1 who had a plexiform > neurofibroma shrink by 30% > after treatment with Pirfenidone. Based on this > success, the Mayo > Clinic > currently has a phase II trial of Pirfenidone for > plexiform > neurofibromas. See this website: > > http://www.nf.org/clinical_trials/nf1/spinal_neurofibroma/A_Phase_II_Clinica l_Trial_of_Pirfenidone_for_the_Treatment_of_Patients_with_Neurofibromatosis_ Type_I.htm > > Currently, the NCI will soon start a pediatric trial > of Pirfenidone for > Plexiform Neurofibromas. I have attempted to get UT > Southwestern > included as a study center, but have thus far been > unsuccessful in my > attempts. > > I am not aware of Pirfenidone having any activity > against tumors in > patients with NF-2. But, it probably wouldn't hurt to > inquire. > > I hope this helps. > > Dan > > > > > > > C. Bowers, MD > Department of Pediatrics MC 9063 > UT Southwestern Medical School > 5323 Harry Hines Blvd. > Dallas, TX 75390-9063 > tel: > fax: > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Hi Crew, Especially Barbara. Thought this might be good food for thought from Anne's geneticist. Vicki I agree that perfinidone looks very good. I spoke by e-mail with Dr. Dusica Babovic. She let me know that the phase II trial is full-but she will let me know when the phase III trial starts-probably next year. I also e-mailed Doug Hyder again at CHLA-He is said to be involved in a PEG intron trial here in LA-but I have been having trouble reaching him. Hope all is well with you. Regards, J S-B Fwd: perfinidone << Message: Re: perfinidone >> Dear Dr. Bartelt, I have sent two previous e-mails with no response from you. This is the third with another bit of new information. Please respond. thank you. Vicki Pellerito (Anne Pellerito's mom) Quote Link to comment Share on other sites More sharing options...
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