CHOOSING AN HSCT FACILITY

CHOOSING AN HSCT FACILITY

Deciding which type of HSCT (Myeloablative or Non-Myleoablative) is more suited to you and your own situation will help inform you as to  which facility is more appropriate to treat your MS. It is the general consensus that if you have a progressive form of MS (PPMS or SPMS) Myleoablative HSCT is the most effective treatment. Unfortunately the only places currently treating progressive forms are Russia, Israel and Mexico all  of whom perform the non-myleoablative type.  It has to be said that Dr. Federenko in Russia has achieved some amazing results for PPMS patients that he has treated with his own specific  protocol. In Europe, due to an organization known as EBMT – https://www.ebmt.org/Contents/Pages/Default.aspx. which has formulated a standard treatment criteria to regulate and compare results from patients treated, most facilities will only treat MS patients with Relapse remitting MS, with at least 2 failed DMDs (disease modifying drugs) and current MRI’s that show active lesions and inflammation. This is also true of South Africa, and Singapore as well as Germany and Italy. (See Facilities). I personally believe this to be a sad state of affairs as their decision hinges heavily on very early trials for HSCT where a proportion of PPMS and SPMS patients were included, but ultimately on reflection were older and in many cases sicker, with high EDSS (Expanded Disability Status Scale —http://en.wikipedia.org/wiki/Expanded_Disability_Status_Scale) Scores.  The results unsurprisingly did not bode so well for the progressive patients and these were rejected out of hand for further studies.  This contributed to the EBMT Guidelines as they stand today. It is worth noting that phenomenal results coming out of Russia for PPMS patients disprove these early findings and also reinforce the mantra of this site: HSCT STOPS DISEASE PROGRESSION IN ALL TYPES OF MS!

AA Maximov Hospital Russia

AA Maximov Hospital Russia, where MS patients are treated with Non-Myleoablative HSCT by Dr Denis Federenko

 

26 comments

  1. How do I apply to be accepted for treatment? I currently have rrms DX 02 please email or call 559-903-7109 California. Thanks for your time.

  2. I applied for treatment in Russia and your EDSS score needs to be a 6.0. Mine is 7.0 so I was told that I can not have it done there but I am persistent and will be trying at all hospitals that do HSCT treatment.

  3. Hi. I am 53 years old and was dx with RRMS in late 2009. I have progressed significantly since then to SPMS. I’m not sure which protocol would best for me; however, I am leaning toward what Mexico has to offer. I will speak with my neurologist when I see him next week. Hope do I even apply for this treatment?

    1. Hi Renee. You can apply by e mail. The contact information for Mexico is on the HSCT Facilities page. Its easy to apply. Mexico is a good choice. You are still relatively early if you were diagnosed in 2009, so there is a good chance this treatment will help you. Join HSCT Awareness on facebook to ask other people who have had this treatment for their thoughts! Good luck!

  4. My wife has Primary Progressive MS, age 40, diagnosed 3 years ago and is in need if treatment asap. Please help. Please reply with a contact name and phone number. Thank you

  5. Hello, I’m a 47 year old female the was Dx with RRMS in 1992 (which was the onset and confirmed via MRI). I experience little to no flare ups till about 7 years ago where my balance, coordination, vision, memory issues starting to decline/decrease even though my MRI’s showed not activity. Even made a full recovery from Bell’s Palsy in 2008… Neuro is borderline wanting to classify me as SPMS currently. None the less I have been researching the heck outta this HSCT treatment and an highly interested in the procedure. In your experience/judgment, do you think that I would be a good candidate? I’m currently not taking any meds for the MS as I’m feed up with the daily injections and don’t see the copaxone doing anything but giving me anxiety and depression cause I feel it’s useless drug after 13 years. Your thoughts?

  6. Hi I am 50 and was DX in 1994 with RRMS and have had new lesions appear in brain and spinal card in the last 2 years. My hands are numb, shooting pains in my eyes and my balance is not the best. I am wondering if any centre would and could help me.

    1. Hi there the best thing to do is apply directly to the facilities that would treat you and they can evaluate whether you would be a good candidate. You can find their details on the facilities list on the site. Mexico, Russia, Philippines would be the ones to apply to. India may be posted as a new facility soon but we are waiting to get feedback on the first group to be treated there first. If it proves to be legitimate it is considerably cheaper than most other facilities at $30,000. It will be on the list by the end of November. If you want to learn more about HSCT and ask people questions join the face book groups. I am not sure where you are located but there is Hematopotic stem cell transplant for MS and Autoimmune diseases, HSCT Awareness, and then there are also groups for specific facilities. Here you can ask specific questions regarding treatment. Good luck!

  7. If you want to learn more about HSCT and ask people questions join the face book groups. I am not sure where you are located but there is Hematopotic stem cell transplant for MS and Autoimmune diseases, HSCT Awareness, and then there are also groups for specific facilities. Here you can ask specific questions regarding treatment. Good luck.

  8. I was diagnosed in 1995, and are now 2nd progressive, I walk with a walker and have bad balance, I am in very good health and am very keen to be rid of this beast.

    1. Hi the best thing to do is to apply to the facilities that are listed on the World Wide Facilites list. Your options would be Mexico, Russia, Philipines and possibly India which is not on the list yet as they are treating their first group at the moment and we are waiting to get feedback before approving the facility. It is considerably cheaper at $30,000 than any of the other facilities. When you present your MRI info and your specific details they can let you know whether they think that you would be a good candidate. If you want to learn more about HSCT and ask people questions join the face book groups. I am not sure where you are located but there is Hematopotic stem cell transplant for MS and Autoimmune diseases, HSCT Awareness, and then there are also groups for specific facilities. Here you can ask specific questions regarding treatment.

      Kind regards, and good luck,

  9. I am 47 with secondary progressive, I would be very interested in Mexico, please send me information as how i apply. With thanks Dehra

  10. Hello, I would be very interested with this type of treatment. Mexico, Russia or anywhere. Northwestern turned me down since I had no active lesions on my MRI. That was a couple of years ago when I didn’t have any balance issues. I guess I should go back into the corner and stare at the wall and endure this slow death of a disease. Hopefully something god happens. Hopefully this is a better year. Please get back to me with what I may need as far as medical records. Also, what might the cost be. I have also tried so many things. I am currently on OCREVUS to no avail. Still feel like I am walking on marbles with Bambi legs. Hoping some info comes out that helps the less fortunate other than just saying that a firefighter is still working after 25 years. If that was the case for most of us, we wouldn.t be looking into this as much. Please get back to me with what you might require. Unfortunately the FDA isn’t doing much. I wish they would fast track something that worked, Another subject. I guess old Trump isn’t doing much in this area. He did say he was. Ha!Ha! Take and God bless. Godspeed, Dave Uherek

    1. Hi Dave, I can hear your frustration with everything related to MS and your condition. Yes it is very upsetting and frustrating there is no doubt. I personally am no fan of Ocrevus as it is Rituximab (a chemo drug) dressed up by the drug company as the original patent expired. As far as receiving HSCT goes there is more and more evidence that it is less effective on long term diagnoses of MS where the disease has become progressive. How old are you and when were you diagnosed? I do disagree with the refusal to treat anyone that does not show enhanced lesions and active inflammation, as the truth is that one week you could show inflammation on an MRI and the next week show none. However there are other factors that need to be computed when weighing up whether it is worth pursuing treatment. What is your EDSS? I am happy to offer you advice, but at the end of the day perhaps the most useful thing to do is to contact Dr. Federenko in Russia and supply your history. He is very experienced and well equipped to advise whether you would be a good candidate for this procedure. The contact information can be found on this site on the HSCT FACILITIES page. Please reach out if you have more questions, but I wish you all the best.

      1. To ADMIN, Hello and thanks for your response. In a nutshell, I was Dx in 1994 (about 24 years ago. My initial symptoms were identified then. This went away for 10 years (no symptoms noticed) I tore a minor pectoralis ligament power lifting. (about 420 pounds) . Went to surgery to have repaired. Since the hospital had to put me asleep, I started to experience symptoms 2 – 3 years after that. Never knew that I would lose s much strength and coordination over the next 10 years. Currently I am 53 with a wheelchair looking like it will be my best friend next year the way I am progressing. But I do not show any enhancing lesions so I have been turned away by Northwestern. Was hoping to go through this since I was still in good shape then. Well, the great medical industry we have repaired my ligament, but they have nothing for my ms, which has probably transitioned to SPMS according to my neuro. I don’t know where to go from here, however, I want to go somewhere. Ha! The medical industry repaired my ligament, however, left me high and dry on the ms. Still in ok condition, however, I do not walk much anymore due to drop foot and coordination. Also, I was never given an EDSS score. So any information is appreciated. GODSPEED, Dave

  11. Question: With the “explosion” of HSCT facilities, how do determine if a particular facility is legitimate?
    In particular, I am considering the Repair Stem Cell Institute (RSCI, http://www.repairstemcells.com) with treatment in Germany at the Weber Medical Center (€15,500).

    1. Hi Robert,
      Thanks for your comment. To answer your question, unless the facility in question uses chemotherapy as part of the treatment it is not considered a legitimate HSCT facility. At the cost you mention it is highly unlikely that chemotherapy is a part of the treatment at this facility in Germany. Admittedly there are many facilities that are “jumping on the bandwagon” so to speak. As far as I am aware unless the facility is listed on my list on this website, and unless the procedure is as described here on this website it is not legitimate HSCT but some other “Stem cell” procedure. As far as I am aware none of these facilities have a proven track record of success and many of them are bogus establishments taking advantage of peoples desperation!! 🙁

  12. Also, I have tried steroids, gilenia, bg12, tysabri, and rituximab to no avail. I have been on OCREVUS (approx. 11months) Appears that Copaxon isn’t helping anymore. Been taking around 6 years. Looking at trying Lamtrada. Any comments? Thanks.
    Dave

    1. Hi Dave thanks for that information. There is a section on this site that helps you to evaluate your EDSS Score, but there are also mulitple tool online that can help you. Just google “EDSS SCORE”. HSCT is less successful for people with a long term diagnosis such as yourself, and although there are unethical (in my opinion) medical establishments that do take people with a higher EDSS it is not always successful and has been known to have no effect and in the most extreme cases actually make things worse. Probably your best course of action is to approach a legitimate facility like Russia for instance which has an amazing record and an amazing Doctor (Dr. Fedorenko) who offers a very fine tuned treatment geared towards each patient. If you send an e mail to them and explain your history he will assess whether he believes you to be a good candidate for HSCT. How are you doing on the Ocrevus? I am not a fan of this drug. It is Rituximab (which is a chemo drug) re-marketed as the patent expired. Have you looked at any other options, like The Coimbra protocol of high dose vitamin D for instance. I myself have been following this for almost a year and a half now and I feel that it has stopped the progression of my disease. There are other things that are important too. I highly recommend you follow a Ketogenic diet as soon as possible to stop inflammation in your body which is one of the main factors in accelerating the disease. The body is a complicated machine and more than one thing is responsible for the initiation of the disease and diet I believe is one of the main factors. If you have more questions please feel free to reach out.

      1. Thank so much for you comments. I plan to look into this a little further. I will provide you with some feedback on where I end up going from here. Thanks again. Dave

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