Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 i just went to baltimore for a check up,the cellcept isn't working now i have to have i.v. cytoxan, it's acancer drug if that doesn't work they will do radiation i'm not ready for this,please some help me' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 What symptoms are you having and what other drugs have been tried? You might be a candidate for Remicade. Several group members have either gotten it covered by Medicare or private insurance. At least one person has gotten the drug company to provide it free. In the Links section (you can find it at the bottom of all group messages, including this one) there is some info on using Remicade for neurosarc. Here is the web address: http://health.groups.yahoo.com/group/Neurosarcoidosis/links/Infliximab__Remicade_001137910477/I hope that you can find something to help you. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: nuroDate: Wed, 25 Apr 2007 12:00:43 -0000 i just went to baltimore for a check up,the cellcept isn't working now i have to have i.v. cytoxan, it's acancer drug if that doesn't work they will do radiation i'm not ready for this,please some help me' Get a FREE Web site, company branded e-mail and more from Microsoft Office Live! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 the cellcept isn't working now i have to have i.v. cytoxan, it's acancer drug if that doesn't work they will do radiation i'm not ready for this,please some help me' , We've had a couple of other members that use the cytoxan, and do well on it. We've also had a member that has had full body radiation-- and it has extended her life for a very long time. she is no longer part of the group, but I know that her quality of life did improve. Are your MD's willing to try Enbrel or Remicade prior to the Cytoxan? Isn't it Dr. Baughman that is in Baltimore? He is an expert in sarcoidosis-- and so very knowledgable. all of the meds we take are chemotherapy-- and most of the immunosupressants were developed for patients that have had organ transplants-- the Methotrexate, Imuran, Arava- as well as the Cytoxan. I know that it is one of the more difficult meds to use-- and yes, you do have the side effect of hair loss, but if it stops the progression, it may be a good choice for you. I'm sure that others will respond and let you know how they have done with the Cytoxan-- and i hope that you can find some comfort in knowing that this will work out. Sincerely, Tracie NS Co-owner/moderator ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2007 Report Share Posted April 28, 2007 Dr. Baughman is in Cincinnati. Get a FREE Web site, company branded e-mail and more from Microsoft Office Live! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 > > In a message dated 4/25/07 5:27:09 AM Pacific Daylight Time, > marymaryhouston@... writes: > > > > the cellcept isn't working now > > i have to have i.v. cytoxan, it's acancer drug if that doesn't work > > they will do radiation i'm not ready for this,please some help me' > > > > , > We've had a couple of other members that use the cytoxan, and do well on it. > > We've also had a member that has had full body radiation-- and it has > extended her life for a very long time. she is no longer part of the group, but I > know that her quality of life did improve. > Are your MD's willing to try Enbrel or Remicade prior to the Cytoxan? Isn't > it Dr. Baughman that is in Baltimore? He is an expert in sarcoidosis-- and so > very knowledgable. > > all of the meds we take are chemotherapy-- and most of the immunosupressants > were developed for patients that have had organ transplants-- the > Methotrexate, Imuran, Arava- as well as the Cytoxan. > > I know that it is one of the more difficult meds to use-- and yes, you do > have the side effect of hair loss, but if it stops the progression, it may be a > good choice for you. > > I'm sure that others will respond and let you know how they have done with > the Cytoxan-- and i hope that you can find some comfort in knowing that this > will work out. > > Sincerely, > Tracie > NS Co-owner/moderator > > > ************************************** > See what's free > at http://www.aol.com. DEAR TRACIE My name is Cathy, I was diagnosed 5 years ago. I recieved cytoxin for a year-2 trials of 6 months each. I did well on it, but it did not restore my ability to walk. I had no side effects. I live in North Jersey and my Neurlogist is Dr. Dennis at Hackensack Hospital. If any one else in North Jersey Would like to chat, Please E-mail Me at KATHY_CEAMOORE@... I WOULD LOVE TTO HEAR FROM YOU!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 Hi Kathy, Welcome to the group. With the group- we generally communicate in an open forum posting like these that you are reading now. Over time, many of us do communicate privately with someone we become good friends with, and that's all good. We do like to have you share your story with the group, so that we can all learn from each other. It also lets us be sure that wrong or possibly harmful information isn't happening. I do hope that you will continue to share within the group-- I'm so glad that the Cytoxan helped-- at least slow progression?? We have over 400 members now-- and we are all on a path to help each other. Do you have systemic sarcoidosis, pulmonary, or neurosarc? Or all of the above... Take care, and thanks for sharing, Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.