Stem Cell Transplant

Has anyone else heard about the stem cell transplant trials they are doing for CIDP in Chicago?
I just read about it and it seems that patients are getting years of relief from participating in this procedure, only drawback is I read that it costs 25k and I do not know if insurance will pay for any of it.
If anyone else has heard of this please let me know.

I was just accepted to the clinical trial in Chicago for the stem cell transplant. Some insurances pay for it. The people That I have been in contact with are very happy with the results. I go in February to do testing & meet the Drs. I am really excited!
Heather

Can you give me information to try to get on the list if any? Who do I need to get into contact with etc?

Contact Paula at Dr Burt’s office in Chicago… 312-■■■■■■■■… She is only there on Tuesday, Wednesday , & Thursday. Dr Burt is the Dr that does the actual Hematopoietic Stem Cell Transplant.
I emailed Paula my story & sent her my medical records. Dr Burt has to review your records before you can get an appointment. Good luck! I know myself & my family are very excited about this.
Heather

Thank You! I really appreciate it! I’ll let you know how it goes!

& vice versa!

I called Paula and she called me back! She asked me all sorts of questions and then emailed me the required documents.
I am doing everything tomorrow(requesting every thingies keeping my fingers crossed!

That’s great Paula! I hope they accept you. Maybe we will end up doing it aroung the same time…

That would be nice(not that we have this disease or that we have to do this) and maybe we will have more in common.
Just have to wait for my records to turn in.
Did you already have the interview?
And how are you feeling?
Paula

My interview is February 5th. I am better this week than last week. Finally convinced the Dr to put a tunnel catheter in me that I can go home with so if I need plasma pharesis again I can do it as an outpatient… I in the mean time the IVIG seems to be working again. Here is my email address… ■■■■■■■■■■■■■■■■■■■■■■… We can stay in touch that way. How are you feeling?

Awesome! Faxing my request for records on Monday, it will take ten days for them to come in.
I hope after I send everything in I will hear something soon after that.
Plasma pharesis, what does that entail? I’m on my 40th IVIG this coming Wednesday and it doesn’t seem to work, my legs feel all weak and rubbery and my hands don’t like to work.
Today I had to use my walker, my legs didn’t seem to want to work well and balance is off. Left hand not working well and extremely tired.
My email is ■■■■■■■■■■■■■■■■■■■.
Paula

Hi Heather...you mentioned this and coincedentally, I also heard stem cell transplant somewhere else this week. We are in Texas, but originally just 4 hours away from Chicago. What hospital system is Dr. Burt with? Thank you, Melissa.

Heather R said:

Contact Paula at Dr Burt's office in Chicago... 312-■■■■■■■■... She is only there on Tuesday, Wednesday , & Thursday. Dr Burt is the Dr that does the actual Hematopoietic Stem Cell Transplant.
I emailed Paula my story & sent her my medical records. Dr Burt has to review your records before you can get an appointment. Good luck! I know myself & my family are very excited about this.
Heather

Dr Burt works with Northwestern Memorial Hispital…, I decided to go to him because he has been doing it on CIDP pts since 2006… I am tired of being Drs genuine pig. I want a Dr that has delt with people like me & has had known success with them. I haven’t heard of anyone in Texas. What Dr is doing it there?
Heather

@ Paula… Plasma pharesis is what they call a ‘quick fix’ for me. They put a double Lumen catheter in my neck that basically goes into the tip of my Aorta… Then you get hooked up to a machine that pulls your blood out. There is a huge centerefuse in the middle that separates your blood & plasma. The plasma (where our bad Antibodies are) is separated & collected into a big bag. Our blood is returned to us with plasmanate… & the bag of bad plasma is thrown away. They do this every other day for 5 treatments total on me. It brings me back to ‘my normal’ for about 2 weeks. Resently they gave me Rituxan 1x a week for 4 weeks & I restarted my IVIG… So far it seems to have made my IVIG start working again… Let’s see it’s only been a week. In the mean time I had them out a more permanent tunneled catheter in my chest incase I need the plasma pharesis again. This way I can do it on outpatient rather then spend 10 days in the hospital every 2 weeks. I have 2 kids & a husband. It was beginning to be to much.
Heather

Heather
All I can say is I’m sorry you have to go through all that, you and so many others are the reason why I’m trying to be more aggressive toward this disease.
I will talk to my neuro again, she said in my last appointment that my IVIG wasn’t lasting long enough and gave me prednisone which I had to stop taking. I know she didn’t want to do what you’re going through because she didn’t want to take all the good stuff out, but I feel horrible during and after with maybe one day of relief!
Hopefully I will get some kind of treatment plan that will make me feel a little better.
Paula

Ask her to try the Rituxan but not to stop the IVIG while you are doing it… The only other person that did that said after the second Rituxan treatment her IVIG started to work again…
Heather

Hi Paula… Have you heard back from Chicago yet?

Just got the records from the third hospital, will send it all in this week!

I also read about the sct. Are they still accepting new patients? I thought they have finished?

I was a Stem Cell Transplant patient at Chicago in November of 2012. It has changed my life. I am no longer on any therapy except some pain meds for lingering burning pain. Like you I had tried a multitude of treatments. ( steroids, IVIG, Plasmapharesis, immunosuppressive meds like Cellcept and even Rituxan) they work for a great deal of people but did not stop my relapses and slow progression. The program is still accepting patients. It is through the Division if Imunotherapy and Autoimmune Diseases. Dr. Burt is the head and Paula Godziak is the coordinator for CiDP. It is right now still in Phase II but will be changing this year I think. Insurances are all different. Some cover and some do not but more are covering. The 25,000 is the usual Medicare copay but I have heard that it has lowered due to new healthcare act. Mine was covered except for usual copays and travel/hotel/food expenses. If you would like more info, you can email at ■■■■■■■■■■■■■■■■■■■.