Got it done - Dr. Slavin's Protocol

[youbetcha]

Understood.....thanks.

[hannakat]

Greetings all!

I also had bone marrow aspiration then stem cell infusion by CTCI. So glad to hear of your good progress Ariehs! In one of your posts you mentioned relapses stopping for 3-5 years and I would like to get more information about this since I've not heard it mentioned before. I've re-read all the information Dr. Slavin has sent over the last several months and couldn't find any reference to that and so it concerns me a bit, partly because I know a gal who did have a relapse not long after her treatment and another who relapsed about a year after her infusion.

Keep up the good work Ariehs and stay positive!

[ariehs]

I wasn't saying that for sure relapses will stop for so long, but Dr. Slavin mentioned a number of cases, and Orit mentioned some as well. And cases with even greater success. Also some with lesser results. Nothing is guaranteed, and there is so much more research needed in this field, but I am optimistic.

[youbetcha]

ariehs, any updates?

[ariehs]

Really not a lot more to tell. My whole right side (from my face down to my foot) has become just slightly numb as of a few days ago, but that's happened before. In fact, this time it is very mild by comparison to times past.

... but in the past this has been a precursor to a relapse. I'll update when I know what's going on.

[youbetcha]

Has anyone who had the stem cell infusion feel worse post infusion?
I was able to walk without difficulty pre-infusion and I now have pain, weakness and tightness in my legs (as well as loss of sensation). I'm a little worried that I'm getting worse instead of better if not at least the same as pre-infusion.

Any insight would be appreciated.

[ariehs]

Update: That numbness I mentioned has gone away. I guess this time it was not a precurser like it has been in the past. Everything is continuing tops!

@youbetcha: that doesn't match with ANYTHING I've heard. How long ago did you get the infusion, and where did you go for it?

[youbetcha]

Update: That numbness I mentioned has gone away. I guess this time it was not a precurser like it has been in the past. Everything is continuing tops!

@youbetcha: that doesn't match with ANYTHING I've heard. How long ago did you get the infusion, and where did you go for it?

Ariehs, I had the infusion on March 9th in Athens, Greece under CTCI - Prof. Slavin. I know it sounds strange but it's true. I have e-mailed the Prof. and hope he will take the time to respond. I had a very rough time post infusion, I had to stay in the hospital for 3 days while the others were well enough to leave the following morning.

Edit: I forgot to mention I'm glad to hear your doing well

[Zeureka]

I don't have an EDSS score. I've not yet settled on a primary care physician.

The infusion was in Athens, because Dr. Slavin & his team aren't allowed to administer the infusion in Israel at the moment. It's a political thing. Dr. Slavin's clinic is in Tel Aviv, and he & his team do the bone marrow extraction at their clinic. 6 to 8 weeks later the infusion is in Athens.

Hi Ariehs, thanks for this interesting info.
Would you know if this political thing is still the case now? Or now possible to do the full HSCT treatment (including infusion) in Dr Slavin's CTCI clinic in Tel Aviv? Thanks, Steffi

[packo]

I don't have an EDSS score. I've not yet settled on a primary care physician.

The infusion was in Athens, because Dr. Slavin & his team aren't allowed to administer the infusion in Israel at the moment. It's a political thing. Dr. Slavin's clinic is in Tel Aviv, and he & his team do the bone marrow extraction at their clinic. 6 to 8 weeks later the infusion is in Athens.

Hi Ariehs, thanks for this interesting info.
Would you know if this political thing is still the case now? Or now possible to do the full HSCT treatment (including infusion) in Dr Slavin's CTCI clinic in Tel Aviv? Thanks, Steffi

Steffi, allow me to answer your question, since you sent me a pm with the related question(s), and it is good that my answer is accessible to everybody.

The way I understand this topic, it talks about the experience of people that received mesenchymal stromal cells (MSC - there are few topics about them on this forum), so this is not HSCT, those are two different procedures. When I was at Hadassah, they stored some of the cells harvested from my bone marrow in order to maybe latter use them in the procedure described on this topic. Namely, back then Israel Health Department did not allow their application in Israel, so they were administered on other locations, amongst them also in Greece.

I made a little inquiry the last couple of days, and it seems that now it is possible to receive both of those treatments in Tel Aviv. But they prefer to use the non-myeloablative (lymphoablative) HSCT for patients with very active inflammatory disease confirmed by MRI, and such a treatment can be combined with MSC.

I personally did not try MSC because my neurologist thinks that now I have time and should wait a little to see how the things will develop.

I do not know whether the HSCT still can be done at Hadassah and I do not know the price of the procedure in Tel Aviv.

[Zeureka]

Thanks a lot Packo for informing us based on the procedure you had in Hadassah.

The Hadassah clinic yesterday informed me as follows:

"Thank you for contacting Hadassah University Hospital center, Jerusalem,
Israel....Regarding Multiple Sclerosis treatment - at the moment a stem cell therapy is not in an open trial stage. But we recommend you to arrive for evaluation, confirmation of the diagnosis and determination of the exact MS form that you are suffering from...(they explain general procedure for MS diagnosis)

Prof Slavin doesn’t work in Hadassah any more. He is in a hospital in tel
aviv."

Tel Aviv CTCI center (Prof Slavin's clinic) informed me as follows:

"Practically speaking, in case you are interested in our service, please consider one of 2 choices:

[1] In case you have already decided to go ahead and would like to proceed exploring our experimental procedures, you are welcome to make an appointment and show up at our clinic. This can be done by contacting our Administrator Assistant Ms. Ruth Grunbaum at our office by email [ruth@CTCIcenter.com] or by phone [+972 77 777 9296].

[2] In case you would like to continue with remote consultation by emails, faxes or phone calls with you or with your treating physicians, consultation fee will be required because such a service takes much of our time since it will require providing more information and explanations of treatment options that may be available at our center, as well as answering questions which result in back and forth emails on a long time basis. As such, consultation fee of US $1,250 will be requested 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.

Consultation fee should be transmitted by electronic transfer to our bank account using the following address:..."

I'm a bit stuck with this I admit - not very helpful to just get information on possibilities without needing to travel or pay such an amount.

[ariehs]

Hello!

I was away from this website for a long time... I don't really know why. Life just got busy.

I started relapsing again 14 months after the treatment with the CTCI, so while that was great (3-4 a year down to nothing for over a year!!!) I had to start looking at new options. In 2011 I had 2 relapses, and avoided a 3rd. I tried copaxone, but that didn't help. I was on Tysabri for 14 months,and that worked GREAT, but I didn't want to continue because of the PML risk. I'm on Gilenya now, but it's early days. So far, so good.

I tried to contact Dr. Slavin when I started looking at my options, and it was hard to get any information out of the CTCI. The people who I had worked most closely with - Dr. Gesundheit and Orit - were both gone with no explanation. I had wondered why they had stopped following up with me, and now I knew.

When after months of getting responses to my questions that had NO BEARING on what I was asking, I used the words 'unprofessional' in an email. Dr. Slavin responded in a very disgusting way. Demanded an apology before he would share any more information with me at all. I don't think I can trust a doctor who would act that way, no matter what I said. I apologized anyway, but I will not go back without more information on what the hell is going on.

I spoke with my neurologist at the MNI (Montreal Neurological Institute) and he said that while they used to work closely with Dr. Slavin, communication had failed completely, and he wasn't surprised to hear my story.

Dr. Gesundheit, who is still very helpful when I communicate with him, avoids the question of why he left and what is going on. This doesn't help me trust Dr. Slavin or the CTCI in the slightest. The therapy was good, and I'm glad I tried it, but I can't work with a doctor I can't trust. Dr. Slavin - in my eyes - has gone from the most reputable practitioner who works in the stem cell field, to being a very questionable one.

[CureOrBust]

Thank you for being frank with your experiences, and not letting the doctors hide behind some unexplained patient courtesy.

Is "Dr. Gesundheit" his real name? really?

[Vikingquest]

hey ariehs, good to see you posting again, but sorry to hear that the MSC's didn't work for longer... I think that pretty much everyone who frequents the stem cell threads here are looking into HSCT as a way to permanently stop their ms. Is this something you are looking into too and is that why you tried to re-connect with CTCI? It seems like a logical step.

It's a bummer to hear that Slavin has acted like that, as I was thinking of using his place for HSCT if it came to it...

[Gogo]

Hello!

When after months of getting responses to my questions that had NO BEARING on what I was asking, I used the words 'unprofessional' in an email. Dr. Slavin responded in a very disgusting way. Demanded an apology before he would share any more information with me at all. I don't think I can trust a doctor who would act that way, no matter what I said. I apologized anyway, but I will not go back without more information on what the hell is going on.

Professor Slavin gets hundreds of emails every day. Answering all of them takes up his time. Saying "unprofessional" to someone like him is a rude thing. Sometimes answering certain questions can raise legal issues that every doctor would like to avoid. Prof. Slavin conducted trials at Hadassah with MSC with results that have been confirmed at Case Western and also in the UK clinics. So, it is real. However, it has been said that MSC does not help everyone and its effect is not forever. Also, even scientists can not tell too much about what it is going on with the stem cells., even with HSCT. I think it is a great thing that you got relaps free for 14 months. Have you tried to get another shot?
Sometimes not the kindest doctors do the best job.

Have you tried to contact Hadassah? They do clinical trials with ALS patients that is even a harder case than MS and their phase 1 results were very good. It is a new, different type of stem cell tretment. Maybe, there is a way for MS patients to get this treatment at a private clinic somewhere in Israel before completing the clinical trials.