Bone Marrow Transplant

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ColumbusMom
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/13/2009 1:04 PM (GMT -6)   
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.

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 2/13/2009 1:54 PM (GMT -6)   
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.


 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

Post Edited (bohuck2) : 2/16/2009 1:50:24 PM (GMT-7)


ColumbusMom
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/13/2009 2:13 PM (GMT -6)   
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.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/13/2009 2:47 PM (GMT -6)   
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.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


ColumbusMom
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/13/2009 3:00 PM (GMT -6)   
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.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/13/2009 3:12 PM (GMT -6)   
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.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 2/13/2009 3:52 PM (GMT -6)   

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.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 2/14/2009 7:25 AM (GMT -6)   
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

healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 2/14/2009 1:34 PM (GMT -6)   
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

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 2/14/2009 7:30 PM (GMT -6)   

Cindy,

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


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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