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Posted 2/13/2009 7:04 PM (GMT 0)
My son has been approached to participate in a bone marrow transplant trial. I read about the results of the recent study at Northwestern. Is there anyone on here who has undergone this treatment? He was going to start on Cytoxin but now they are pushing the BMT.
Posted 2/13/2009 7:54 PM (GMT 0)
You probably need to talk to a Neurologist if you can. That would probably be the best thing to do before he makes a decision.
Posted 2/13/2009 8:13 PM (GMT 0)
His Neurologist is the one who approached him. He has tried Avonex and Copaxone without results. He  has  had four courses of IV steroids in the last year without relief. His MS is very aggressive and progressing rapidly. He is two years since diagnosis and has 18 new lesions since late September 2008. It would seem this is the ultimate, last chance option, but of course we are terrified.
Posted 2/13/2009 8:47 PM (GMT 0)
Hey ColumbusMom

Welcome to the board. I'm so glad u'r here and are posting. Let me start by telling u that i'm awed at u'r strength in being here for u'r son. I can't imagine having to face this sort of thing for/with one of my own children. Kudos to u friend. I know u are terrified and just don't know which way to turn. U are doing the right thing....seeking out information and answers. I'm not sure anyone here has tried this method, but i am going to try to find some information on this and will post links to what i find. In the meantime, please feel free to come and just talk and let us be here for u. How old is u'r son? How old was he when dx'd? Hang in there friend. U will get thru this and he will make it better than u know. We will be happy to help u find any answers we can. Post any questions u have or just vent anytime u need. We also have regular weekly chats on Monday's at 6pm central. We'll post a reminder on Sunday's or Monday's to let u know and it'll tell u the time for u'r zone. I hope u'll be able to join us. Maybe u'r son could post as well sometimes. Take care and again, welcome to the board.
Posted 2/13/2009 9:00 PM (GMT 0)
Thank you so much for the welcome. I am indeed overwhelmed. My son is 30 years old, diagnosed 2 years ago. He had been married less than a year with a new baby. His wife has left him and he is now a single father and he and I are raising the baby. My son is struggling physically, emotionally and financially.  He has been going to a Men with MS support group and I think it is pretty good for him.  

My son's dad is wheelchair bound with secondary progressive MS, which is another stressor.

Again, I so much appreciate the welcome, I have felt very alone and isolated.

Posted 2/13/2009 9:12 PM (GMT 0)
O friend....do not feel alone anymore! I know u must feel u are fighting this alone, but u aren't. We can't be there in person of course, but we'll certainly be here with u in spirit. MS can rob much from u, as i'm sure u'r more than aware, so maybe u can recharge here. Wow...two people to care for with ms AND a baby....u are the trooper! Hang on friend. U are much stronger and more capable than u know. U will get u'r family thru this, but u have to make sure u come out ok on the other side too. Again, i'm so glad u'r here! Take time to let this be u'rs. We will be u'r back board as much as u need. Just take care to make sure u are ok.
Posted 2/13/2009 9:52 PM (GMT 0)

ColumbusMom,

I am so sorry to hear of about your son.  I am glad you posted.  I am sorry we can't offer more help.  We can offer support.  Bone marrow transplant is considered experimental.  Do you know if he will for sure receive the bone marrow transplant?  You say he is going down hill.  I am not sure I would risk being in a trial or study.  Is there the possibility that he will receive no treatment as the control group?  Cytoxan has a long history of success with MS.  You need the doctor to clearly help your son to weigh the pros and cons of the cytoxan versus the trial for bone marrow transplant. 

Many find that cytoxan early on after diagnosis followed by copaxone or an interferon can be effective is slowing progression down.  Have your son get as much information as possible before making a decision.  I wish you all the best of luck!!!  Please keep posting and let us know how you and your son are doing.

Posted 2/14/2009 1:25 PM (GMT 0)
Hi Columbus Mom,

I just saw, this week, on one of the national morning shows a man in his 20's that went through this exact thing.  He had chemo (they didn't say what kind) and then the bone marrow transplant.  He said now that he feels like he never had MS.  He said his lesions are still there but the disease has stopped progressing and his MS symptoms are gone!!!  The spokes person for this procedure said this guy was a part of a small number of people they started with.  They said now it is a larger number of people they are using and after the results are proven, they will take it to the FDA.  Best of luck to both of you. 

Cindy

Posted 2/14/2009 7:34 PM (GMT 0)
Columbus Mom,

I have a correction to my post.  It wasn't a bone marrow transplant the guy had after the chemo, it was stem cell transplant.  So sorry I told you the wrong thing.  I still wish you and your son the best.

Cindy

Posted 2/15/2009 1:30 AM (GMT 0)

Cindy,

You were not that far off.  It is the naturally occurring stem cells found in bone marrow that seem to help. 

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