Reply To: SCT… What is the success rate.

August 29, 2012 at 7:31 pm

Rick D

 I am happy to answer any and all questions.  I was so fortunate to be guided through by a couple of patients that went through the sct prior to me that I want to help “pay it forward”. 

 When I was first diagnosed (it went undiagnosed for several years), I responded quite well to the IVIG … was still dancing several nights a week, working, gardening, etc.  But that lasted only about a year then it just wasn’t enough and I started needing the IVIG more and more frequently with less results.  The most I got out of IVIG was energy and I was still losing ground there also.

 I went to Chicago to start the pre-testing, follow-up testing, mobilization, etc on July 11 last summer.  It just depends on what your particular circumstances are as to how many tests you go through prior to the transplant, but the first several weeks are as an outpatient.   I could have left Chicago twice during that time but chose to stay as my daughter was with me – she came home from Tanzania to be with me and I decided Chicago summer beats Houston summer any day and so we stayed and did some tourist things.  So during that first month, in between tests and procedures, we went to museums, the Navy Pier and enjoyed Chicago.  I also was very fortunate that there were a record number of us going through this at the same time (10 total – 4 with CDIP, 4 with MS, 1 with Lupus and 1 with Crohn’s) and we were staying at the same hotel, so became friends and each other’s cheering squad!  A lot of my social time was spent with fellow sct patients and that made it even easier as we really understood and accepted each other! 

 I went into the hospital for the actual transplant on Aug 16 and was released on Sep 2nd for a total stay of 18 days.  Some get out later or earlier, depending on your blood counts.  The chemo is what puts into remission the CIDP by killing off your faulty immune system and your own stem cells are used to rescue your immune system, so you aren’t released until your blood counts come up to an acceptable level.  The one that stayed in the hospital the longest out of our group is a lady that had Lupus.  She was on dialysis when she entered the hospital but was completely off before being released (much to everyone’s delight as no one expected that much recovery in that short of a time!!!!).  She was in for 20 days.

  The chemo was not bad for me.  Since this is not for cancer, you get a pretreatment that coats and protects all your organs each time prior to the chemo.  The program is also very generous with the meds to make you as comfortable as possible, so while I didn’t feel great, I also didn’t feel bad.  My worse day of sct treatment was still better than many, many days of being sick from the CIDP.  And yes, my insurance covered it.   Also, this only lasted a short amount of time in the bigger scheme of things, so that also made it easier to accept – there was a light at the end of the tunnel and it wasn’t the train!  LoL!

 I hope you get great results from the IVIG as that is the best case scenario …

 Wishing you (and everyone) the treatment that works for your circumstances,

 Linda M