Is there anyone who has taken part of the study in Chicago with Dr. Burke?

I was wondering if there was anyone who has taken part or knows of someone who has taken part of the stem-cell study in Chicago? My husband is not able to take the IVIG or treatments like lyrica or neurontin. He is currently on cellcept(mychophenalate) but its not helping as of yet. We had heard about this study through the IG Living magazine. I would just like to speak with someone who has actually gone through the study to find out more about it.

Thanks, Lucy

No but I heard of the same study from my specialist in NY… I am seriously considering doing the Hematopoietic Stem Cell Transplantation. But the Dr I saw it with is Dr Jeffrey Allen at Northwest Medical. From what I gather he has a very good success rate with this procedure as long as you don’t have any lymphomas with the CIDP. I have done IVIG, plasma pharesis, prednisone, & cellcept. Now I am trying Rituxan… I need a fix. Not a bandaid! Plasma pharesis is the only thing working right now but it only lasts under 2 weeks & my relapses are getting worse & worse. I think your husband should do it! This disease is a bear to deal with…,
Good Luck,
Heather



Heather R said:

No but I heard of the same study from my specialist in NY... I am seriously considering doing the Hematopoietic Stem Cell Transplantation. But the Dr I saw it with is Dr Jeffrey Allen at Northwest Medical. From what I gather he has a very good success rate with this procedure as long as you don't have any lymphomas with the CIDP. I have done IVIG, plasma pharesis, prednisone, & cellcept. Now I am trying Rituxan... I need a fix. Not a bandaid! Plasma pharesis is the only thing working right now but it only lasts under 2 weeks & my relapses are getting worse & worse. I think your husband should do it! This disease is a bear to deal with..,
Good Luck,
Heather

Are you gonna do the study - Heather? My husband is scared of the chemo. and he is also scared that he will be in the percentage of the ones it does not help and it will make him worse. I'm not gonna push him to do it, but I would be there tomorrow if he wanted to go. I just can't hardly stand to see him be in so much pain every day plus see how the disease is daily deteriorating his body. He was diagnosed in 2005 and I don't think he has ever went into remission, just gradually worse every day. I'm praying that he will change his mind, but he has seen his brother and sister go through chemo and he doesn't feel like he would make it through it. He feels he's too weak. Please let me know if you decide to do the study. Thanks for your input

Hi Lucy. Sorry it’s taking me so long to respond. I just had a relapse that put me into paralysis & almost on a ventilator. But they started my plasma pharesis again & I am almost back to normal again. I am trying to get into the program In Chicago as we speak. I have contacted them & sent all my medical records up there for Dr. Burt & Dr. Allen to review. I am waiting on a response from them to see if they will accept me for the Stem Cell Transplant. According to their nurse i should not have a problem being accepted. They have a very good success rate so far & honestly I am not worried about the chemo. It’s not going to be comfortable or fun to go thru but it’s better than what I have been dealing with. I look at it as the end result is hope to a normal life. I have a 13yr old boy & 4yr old girl & a husband I need to live for. I can’t let this disease get me. I will fight it ALL the way. In the UK this type of stem cell transplant has been done on over 700 CIDP pts & they have stayed in remission since… Tell your husband to seriously reconsider. Good luck.
Heather

Will you let me know if you get into the study and your progress through it. I was wondering if it helped all 700 of the pts in the Uk? I'm still trying to work on my husband. He's afraid it will not help him or make him worse. If you do get into the study I wish you the best of luck and you'll be in my prayers.

Lucy

Lucy
I’m also putting in for the program thanks to Heather, I too am outweighing the risks in favor of the reward of going into remission.
I’m not afraid of the chemo and don’t mind the losing hair etc.
I also have children to be here for and a life I want to try to get a sense of “normalcy”(not realistic, but a feeling I’m striving for) I want to get back to.
By all means don’t push him, when he’s ready to he will want to go through the program.
Paula

Hi Lucy… I got into the clinical trial in Chicago… I go for the testing & meeting he Drs on February 4th… I am very excited & hope I am a candidate. His nurse seems to think I am… But Paula is right… You shouldn’t push your husband to do it. Help him research it & maybe he will agree to it… Good luck Lucy. You & your husband will be in my prayers.
Heather


That's great. I wish you the best of luck. Please don't forget me and let me know about your progress when you are able to of course. I'm so happy for you!
Heather R said:

Hi Lucy.. I got into the clinical trial in Chicago.. I go for the testing & meeting he Drs on February 4th.. I am very excited & hope I am a candidate. His nurse seems to think I am.. But Paula is right.. You shouldn't push your husband to do it. Help him research it & maybe he will agree to it.. Good luck Lucy. You & your husband will be in my prayers.
Heather

Thanks Lucy! I will!