July 3, 2015 at 11:12 pm
GBS and SCT can this be done?
Anything in Canada?
July 13, 2015 at 5:57 pm
You need to define SCT. Here, the acronyms GBS and CIDP can be assumed to be understood, but not anything else.
July 14, 2015 at 8:50 pm
This forum has over 25 topics with more than 200 posts about SCT. Simply use the “forum search” function to bring them up and read through them.
I looked into having HSCT in 2013. I found two viable programs in the US that I looked into: Seattle and Chicago. They are both in Clinical trials here:
https://clinicaltrials.gov/show/NCT00716066 Seattle- Dr Georges
https://clinicaltrials.gov/ct2/show/NCT00278629 Chicago – Dr Burt
I selected Dr Georges even though Dr Burt is the more famous of the two in CIDP circles. The two main considerations for me were cost and reliability of results. Cost includes all medical fees, travel expenses, room and board, local transportation, meals, caregiver, etc. The total cost was around $500K. Insurance, if it pays at all (Medicare wouldn’t pay a cent for me), will pay a portion of the medical cost. You must be able to afford all other costs. Although there are many who swear by the effectiveness of HSCT and feel “cured”, there are those that went through the hell of SCT and found themselves relapsing later. I asked Dr Lewis at a 2013 meeting in my home town https://forum.gbs-cidp.org/topic/meeting-of-los-angeles-california-gbs-cidp-support-group/ what he thought about the viability of SCT. He told me and the audience in attendance, that it was an experimental treatment that had not yet shown a high level of reliability or successful repeatability for a large number of those afflicted.
Because of high cost and low success rate, I stepped away from pursuing the treatment, even after crowd-sourcing considerations to mitigate the costs.
Health Canada shows some SCT programs here: http://ctdb-bdec.hc-sc.gc.ca/ctdb-bdec/info.do?submissionNo=169177&lang=eng although this clinical trial appears to be for the medicines used in the chemo-therapy phase of SCT.
Please let us know if you decide to pursue it and what you learn. Best of luck in finding your solution and bettering your health!
August 1, 2015 at 11:35 am
To follow up on Jim’s post- The NorthWestern Study Requires:
“Criteria- Inclusion criteria: Definite CIDP according to the EFNS / PNS criteria (section 3.2.4c) AND Clinically typical or atypical CIDP (section 3.2.4 b)”
GBS patients are not a candidate for this study. In addition, this is a Phase II trial. Reckon that means participants will be double blinded. As in you may not get the real thing.
Want a real answer? Call them.
March 1, 2016 at 2:21 am
Jk: the study is no longer double blind. If you qualify, you will get the real thing. Did research and reached out to the NW team to double check.
April 2, 2017 at 9:17 pm
An update on HSCT: In January 2017, the European Society for Blood and Marrow Transplantation (EBMT) conference was held, in part, to review progress in the area of Hematopoietic Stem Cell Transplantation. Dr Snarski (a Polish Hematologist who attended) said he found Dr Burt’s presentation to symbolize ”… amazing results of the CIDP HSCT trial from Chicago. The publication (of results) is pending…” The link to his statement, courtesy of forum member Minihub67, follows: https://tinyurl.com/lhzsmqb
Dr Richard Burt’s latest SCT video and other news can be found on the following website where he participates:
It seems there is a lot of positive information being given out surrounding the possible success of this treatment approach. The skeptic in me asks why is this ‘evidence of success’ not listed as part of the FDA administered Clinical trial covering the 80 participants? That section of the trial is still blank and the estimated completion of the trial has now moved to December 2018!
I know there are people who have had amazing success with HSCT. I corresponded with two of them in 2013 when I was considering enrolling in the HSCT program. On the other hand, I know that some prominent Neurologists don’t feel there has been sufficient long-term repeatable success to warrant releasing the treatment for general use.
Could it be that favorable statements and presentations made outside the Clinical Trial are geared more toward recognition, research support, and possibly funding? If favorable outcomes existed to a large degree, wouldn’t the FDA allow such statements to be posted based on factual evidence?
I really don’t know the true status of this treatment approach. Dr Burt’s trial has now closed to new participants. Dr Georges is still open. Neither of the trials that are running has officially documented results. I still feel HSCT offers hope of a cure for CIDP sufferers who can afford it and are willing to undergo serious sickness in the process.
What factual information do others have about HSCT for the treatment of CIDP?
May 11, 2017 at 4:35 pm
I have been revisiting the SCT recently. I was diagnosed with CIDP 6 years ago. I am doing really good on IVIG but worried I will get worse or stop responding to the IVIG in the future. So I want to stop this disease in its tracks. But I am also afraid to take such drastic steps since I am stable and doing so well. My neurologist said I should not as it is a very drastic step and there are risks involved. But my take is that why wait until I am sick and have irreversible nerve and axon damage to take drastic steps. Why not try and stop the progression now before I get to that point. I take risks every time i get IVIG… it is a blood product. But my real problem is that I am the bread-winner in the family. I just don’t see how i could take 3 months off my job. Even with short term disability payments they would not cover bills. Plus, I work for a small company of 12 people. I think if i needed to be gone 3 months I would be replaced. My company can’t function for 3 months without someone in my position. So my hands are tied even if I was able to afford or have insurance cover the costs. I don’t see anyway to make it work. So I guess I will have to sit and wait and hope that SCT comes to be a viable treatment in the near future and that it is done at the University of Minnesota so I would not have to be away from home for so long. I could work part-time throughout the procedure via the internet if it was here in MN. I am just so torn at this time.
May 11, 2017 at 8:46 pm
Chirpy, Thank you for your educative comments! It gives forum participants new dimensions to consider.
I can relate to your wanting to try HSCT even at a financial loss. It does hold a promise of a cure. But what is the rate of long term success? Why hasn’t Dr Burt or the others posted even preliminary statistical results of success in recognized media? If the treatment were that successful, I would expect to see it posted all over the mainstream media, including recognized medical journals.
While you are waiting for more conclusive information about HSCT, why not consider Rituximab treatments? The drug is more readily accepted and paid for by insurance, making it less likely to pose a financial burden. It has a half life of 3 months, and, unlike IVIg, doesn’t stop working within a few days. I believe it can help train some of our immune systems into discontinuing the production of B-Cells that exhibit CD-20 and attack “self”. Some info about this alternative treatment was recently discussed here:
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