Non-myeloablative HSCT in Israel (CTCI clinic)

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Non-myeloablative HSCT in Israel (CTCI clinic)

Postby Zeureka » Sun Mar 06, 2011 9:12 am

I have contacted the clinic of Prof Shimon Slavin for first information on the non-myeloablative haemopoietic stem-cell transplantation (HSCT) method for patients with Multiple Sclerosis.
(Website: http://www.CTCIcenter.com)

The seems standard answer I received by e-mail was either to take an appointment and present myself at the clinic - the International Center for Cell Therapy & Cancer Immunotherapy (CTCI) in Tel Aviv - or pay for a consultation fee of US $1,250 "for the extra time we need to spend to learn more about your case and provide details of procedures that may be applicable at our center, on a fully personalized basis, taking into consideration disease-specific parameters and patient’s general condition. Please note that consultation fee provides the source for funding continuous research towards developing newer approaches for the treatment of cancer and regenerative medicine."

Before travelling to israel or paying such a fee it is obvious one needs to know more in general about the seriousness of treatment and procedure applied there...without needing to spend US$1.250, which might be a fee to spend once one decides really that this could be an option.

They admit that "you and the treating neurologist should be aware of the fact that we are dealing with experimental protocols, so although we will be trying to do the best we can, we cannot yet promise successful outcome...The information we need must be detailed enough for us to evaluate each case, as if the patient is in front of us, and only then it will be possible to decide whether or not such patient may be eligible for any of our ongoing protocols. Consequently, we need a lot of back and forth correspondence to be fully informed and than be able to inform the patient, patient’s family and/or his treating physician about all details of the treatment options that may be suitable for that patient."
So we'll first cash you and then we'll see if this could be a procedure for you hey, without guarantee, that sounds great thanks :wink: well sorry for my reaction, but a reason for me to post here to get info from patients that underwent treatment there.

I therefore would be interested if anyone has received such treatment in this clinic and would like to share his experience. Thanks a lot.
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Postby ikulo » Mon Mar 07, 2011 11:14 am

Hi Z - I received MSC treatment from Dr. Slavin one year ago. The short of it is that some symptoms have gotten better, but I continue to have relapses with new symptoms and deterioration. From my point of view, Dr. Slavin's protocol may be worthwhile to some, but it is far from perfect. In addition, the mild success of treatment should be weighed against very high cost ($30,000).

Last year the MSWorld message boards had a lot of activity regarding stem cells, but those conversations have largely fizzled. I think those who were interested had the procedure and whether it worked or not, they decided to move on.

I just took a peek and it looks like MSWorld has archived most of the stem cell forum, so you'll have to dig through the Archive forum or search if you want specific info. But I did find Shah's thread, which is probably one of the most informative threads about Slavin's protocol. http://msworld.org/forum/showthread.php?t=90079

Here is Smallie's blog. You might have to click around to find his posts about the stem cell procedure.. I think it was in 2009. http://toddsmall.wordpress.com/

And if you have any specific questions feel free to PM me.
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Postby Zeureka » Mon Mar 07, 2011 1:52 pm

Thanks a lot Ik. that's very helpful to know. See you also did CCSVI - me as well. Did your old symptoms really come back after that or just did not have any effect in your case? Know I'm not in the right forum to ask that question...but saw it below in your footnote...I feel much less tired (as regards brain-fog and fatigue), but my feet symptoms remained the same. Not worse though. And would certainly do it again.
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Postby ikulo » Mon Mar 07, 2011 2:17 pm

Z - a few days after angio I fell into a relapse. The stem cells rid me of L'Hermittes and right hand tingling, but after angio both of those came back stronger than ever.

I sometimes wonder whether the stems repaired the vascular system in some way (endothelium, bbb, valves..?) and the angio disrupted those repairs. It's puzzling. My brain MRI was unchanged between stem cell treatment and the angio, but haven't had another MRI since angio. Most of my problems are in the C spine anyway.

Have you looked into getting into a stem cell trial? There are a couple that are recruiting: http://clinicaltrials.gov/ct2/results?t ... +sclerosis
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Postby Zeureka » Mon Mar 07, 2011 2:44 pm

Wow great list thanks Ik. ! Would you know if these trials accept also non-US citizens?
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Postby ikulo » Mon Mar 07, 2011 10:42 pm

I apologize, I didn't see you were from Italy. I don't know first hand, but I believe you would have to be either from US or Canada to participate in these studies. Maybe someone else with experience can chime in.
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