Heidelberg University Hospital, Germany
Professor Anthony Ho
This is a myeloablative HSCT protocol utilizing BEAM + rATG
Approximate cost (without complications) 55,000 Euros
This is Europe's #1 cancer research & treatment facility. World class and as good as they come from a treatment perspective, Heidelberg performs hundreds of HSCT procedures every year (for cancer) so they know what they're doing. I won't describe it more because I've already written all about it in this blog.
The only single additional piece of general information I will add something that I recently found out about. . . . . I had my own HSCT during December so it was cold weather outside so I did not previously become aware of this. . . . . apparently Heidelberg University Hospital does not have air conditioning to cool the patient rooms during summer (although they do have well heated rooms during winter such as when I was there in December). This is a complete shock to me !! I really wonder what kind of modern hospital would not have any air conditioning to keep patients cool in the summertime. I am saddened to learn this because I am otherwise so impressed with the hospital (and especially the staff). So just a suggestion . . . . if you have MS and are going to receive HSCT treatment there, try to plan for a treatment schedule anytime of the year other than summer time, lest you will be cooking in your room. Any other time should be OK. Be forewarned.
Here is a short video of Heidelberg University Hospital:World-Class Oncology at Heidelberg University Hospital
http://www.youtube.com/watch?v=qF_YfXmd8Lg&feature=player_embedded#!
I will also add some additional important info regarding the criteria that MS patients must meet for acceptance into HSCT treatment. Each and every MS patient must first be approved by the Heidelberg Neurology Department. Although they will consider all data points that make up the puzzle of each patient's specific case, the following list can be considered "general guidelines" that MS patients should meet and show (through documented evidence, primarly through each patient's own medical records) in preparing the treatment application for approval. As a standard procedure all MS patients seeking HSCT in Heidelberg will need to have a neurological exam, consultation and MRI scan as part of the approval process. Basic inclusion criteria as follows:
- RRMS with previous failure of at least two approved immunomodulator drug therapies.
- Progressive (SPMS or PPMS) with detectable signs of disease activity (which I assume means MRI lesion activity).
- Overall, if a patient has clinically-definite MS and continues to worsen despite the use of an approved immunomodulator drug, then acceptance for HSCT is likely (because drug therapy is not being shown to effectively stop disease progression).
- Must be otherwise healthy & competent to tolerate stem cell transplantation (the transplantation unit also does their own battery of tests prior to HSCT treatment to establish this).
- These are "basic & general" guidelines as there might be other contributory or mitigating factors associated with an individual patient case that may additionally contribute to the decision process as determined by the Heidelberg Neurology department.
If you would like to seek HSCT treatment in Heidelberg, you can e-mail your inquiry to Sonja Kierschke (Heidelberg University Hospital stem cell transplantation coordinator) at the folowing e-mail address:
sonja.kierschke@med.uni-heidelberg.de
Ottawa General Hospital, Ottawa, Canada
Dr. Mark Freedman
This is a myeloablative HSCT protocol.
Dr. Freedman holds a very special position in the worldwide MS community. He is one of the VERY FEW neurologists anywhere that understands, supports and performs HSCT for MS. I am glad to see him persevere in the face of grossly-unfair criticism from those that ridicule HSCT as a treatment for MS. Clearly such critics have no understanding of the actual underlying (immunological) pathology of MS and of the tremendous demonstrably positive clinical efficacy realized from utilizing HSCT as treatment of MS. As opposed to most neurologists around the world, Dr. Freedman has a clear vision and outstanding scientific-understanding of the well-established benefits of utilizing HSCT for treating those afflicted with Multiple Sclerosis.
Dr. Freedman had previously run a randomized stem cell transplantation study in Ottawa, but the trial is now closed because they have already completed treatment of all study participants and is no longer available to new patients for treatment.Here is the currently-closed trial he was managing:Autologous Stem Cell Transplant for Multiple Sclerosis (MS/BMT)
http://clinicaltrials.gov/ct2/show/NCT01099930
However, the good news for those MS patients in Canada (only) enrolled in the Canadian health care system, Dr. Freedman continues to treat patients outside of clinical trial & study work. So if you are Canadian, you can get HSCT in your own country if approved for treatment. (Sorry for those MSers outside of Canada as this treatment will not be available to you.)
Dr. Freedman's HSCT protocol utilizes an interesting (and effective) balance of Busulphan, Cyclophosphamide and rATG in sufficiently large doses to effectively be both myeloablative and strongly lymphoablative.
Here is a well-spoken short video featuring Dr. Freedman. . . .
[Dr. Mark Freedman on] MS and Stem Cells: Time is brain in MS
http://www.youtube.com/watch?v=NhKci3UzSGE
Again, Dr. Freedman's HSCT for MS is only available to those in Canada. Erin McGuey (who's husband Chris underwent this treatment in Ottawa, you can read their blog here:
http://my-end-to-ms.blogspot.com/
She also relayed the following helpful information & insight:
"In terms of the clinical trial in Ottawa, it is in fact over. The last patient included in the trial was treated in February 2010.
However, other patients, such as Chris, are now being treated outside of the trial. They are being prioritized against patients receiving bone marrow transplants for cancer, which is why we had a two week delay for the transplant.
For Canadians, I have been recommending that they have their neurologists refer them to Dr. Freedman. Dr. Freedman and Dr. Atkins (the hematologist) both examine you and determine if you are a good candidate for the treatment.
. . . . they told me that they have seen their best results in patients that currently have relapse-remitting, but are starting to move towards secondary-progressive.
In the trial, they treated MS patients that had higher EDSS scores, in part because of how [it used to be] high risk the procedure is for a non-life threatening disease.
At this point, I really think they are evaluating each patient on a case-by-case basis.
The good news for Canadians, is that there is NO cost for the transplant, other than relocation for the procedure and for the drugs you use as an outpatient (if you don't have any private insurance). The bad news is that I do not believe they are treating anyone outside of Canada since it is not a trial." [George's comment: Lucky Canadians! How long does it take to get Canadian residency & citizenship? Am I also required to serve in the Canadian armed forces? :-)]
Division of Immunotherapy and Autoimmune Diseases (DIAD) Northwestern University Feinberg School of Medicine, Chicago, USA
Professor Richard Burt
This is a non-myeloablative HSCT treatment protocol utilizing cyclophosphamide + rATG
Approximate cost (without complications) USD $150,000
Dr. Burt is the first doctor to conduct US-based non-myeloablative HSCT clinical trials for MS, based upon initial work completed by & together-with Prof. Shimon Slavin that currently utilizes some subset combination of Fludarabine, Cyclophosphamide, Campath-1h and rATG (all strongly lymphoablative agents that does not substantially ablate the bone marrow).
There are few doctors in the world that have more experience utilizing HSCT for the treatment of autoimmune disorders such as MS. I can't add a lot of additional information specific to his treatment program here because I have not recently spoken with any of the medical staff at Feinberg. The only additional important piece of information that I can provide is that they are currently running a phase III clinical trial that a few MS patients may be able to enter and enable medical insurance to pay for the procedure (but it is EXTREMELY difficult because the inclusion / exclusion criteria will eliminate 99%+ of patients seeking treatment). However, DAID is also treating people as "paid patients" outside of the trial. I have talked to a few other people that paid for the HSCT therapy with Dr. Burt but I do not not know what the specific inclusion / exclusion criteria is. I'm sure it is not the same as (but easier to be accepted) compared to the clinical trial, but likely does favor relapsing patients where inflammatory processes' dominate the disease pathology. If you are progressive you can still inquire with them. Here is the DAID website with contact information:
DIAD (Division of Immunotherapy and Autoimmune Diseases), NWU Chicago, IL
http://www.stemcell-immunotherapy.com/index.html
WHO WE ARE: Richard K. Burt, MD
ttp://www.stemcell-immunotherapy.com/who_burt.html
International Center for Cell Therapy & Cancer Immunotherapy (CTCI) Tel Aviv, Israel
Professor Shimon Slavin
This is a non-myeloablative HSCT treatment protocol utilizing cyclophosphamide + Alemtuzemab (Campath)
Approximate cost USD $94,000
Prof. Slavin is a world renown doctor with an extensive & distinguished background in cancer and immunological research & treatment having previously worked at both Stanford University and Fred Hutchinson Cancer Research Center together with Dr. E. Donnall Thomas (winner of the 1990 Nobel prize in medicine for stem cell transplantation). Prof. Slavin is the doctor that originally conceptualized the approach for using a non-myeloablative (he also refers to it as a reduced-intensity conditioning regimen) HSCT protocol for the treatment of hematologically-rooted autoimmune disorders such as MS. Understandably, Prof Slavin's protocol today is quite similar to what Dr. Burt is doing in Chicago (since they have both collaborated in early work) in which Prof. Slavin utilizes Fludarabine, Cyclophosphamide and Campath (all strongly & preferentially lymphoablative agents).
I don't have any first-hand knowledge of the CTCI facility, but I have communicated with several patients that have received treatment with Prof. Slavin utilizing his non-myeloablative HSCT for their MS. They have let me know that the treatment they received from Prof Slavin was excellent, and they have experienced very good curative efficacy success (both stopping of MS progression and some significant MS symptomatic improvement) resulting from Prof. Slavin's HSCT treatment, although every individual case is likely to be different. I also have had the opportunity to communicate closely with a PPMS patient that completed (September, 2011) Prof. Slavin's non-myeloablative HSCT protocol at CTCI. As of the date of this blog posting it is still too early to gauge the curative benefit he is likely to experience from HSCT, but he reports that his treatment and experience at CTCI was excellent and he feels that he was well cared-for during his stay in Tel Aviv and that he enjoyed interacting with Prof. Slavin. This particular MS patient has let me know that he is happy to share the details of his CTCI HSCT treatment experience with anyone else that is seriously considering HSCT treatment at CTCI. Send me an e-mail and I will connect you with him.
Prof. Slavin on Anti-cancer Modalities at CTCI - Overview: Chapter 1
http://www.youtube.com/watch?v=FzrHS5YgbbE
Prof. Slavin on Anti-cancer Modalities at CTCI - Overview: Chapter 2
http://www.youtube.com/watch?v=SsBF509OCY8&feature=related
Because Prof. Slavin's non-myeloablative HSCT protocol is so safe and efficacious, I believe CTCI's patient acceptance criteria is the most flexible and open. Likely CTCI would treat any MS patient (RR, SP, PP) that has a postive diagnosis of clinically definite MS. I would bet they would probably reject few (if any) patients seeking treatment, likely wanting to evaluate each patient individually based upon the specifics of each case without regard to inflexible generalized inclusion/exclusion criteria. I believe you would likely find Prof. Slavin very cooperative in evaluating each case for treatment.
CTCI is additionally offering their own proprietary Mesenchymal Stem Cell (MSC) "infusion" therapy for MS that does not include chemotherapy (approximate cost $32K). The procedure is very similar to a phase I clinical trial currently being performed here in the US by researchers at the Cleveland Clinic. Keep in mind that this is very early study work which, by design, is not intended to determine efficacy of the treatment, but is instead intended to evaluate safety & tolerability. So the treated study-population is quite small and I would not expect to see convincing data as to how well this specific procedure works as curative therapy until a number of years from now. However, I am optimistic about this line of work and am really hoping for good clinical efficacy results because the theoretical foundation science is valid for possibly restoring some lost nerve function.
Here's the US-based MSC infusion phase I trial info. (In the title of this phase I Cleveland Clinic study they wrongly use the word "Transplantation." I really wish they had not used this nomenclature because this is not a classic transplantation procedure because it does not utilize chemotherapy and the wording is only likely to confuse some people. It is actually just a (re)infusion procedure. I'm not sure why the FDA let them incorrectly use the term "transplantation." Oh well.):
http://clinicaltrials.gov/ct2/show/NCT00813969
And here is a video report on the subject from Case Western:
http://www.youtube.com/watch?v=-S49VSZheKk&feature=player_embedded
For this therapy at CTCI, same as the Cleveland Clinic protocol, MSC's are collected from the patient's own bone marrow (probably surgically aspirated from the pelvic bone, but they may also do it by using a mobilization drug (G-CSF) and then perform PBSC collection from the peripheral bloodstream) and then the MSC's are replicated (culture expansion) ex-vivo over a period of 1-3 months to create a substantially large MSC population (in the neighborhood of 1-2 million stem cells per kilogram of body weight) and then re-infused back into the body. (Cleveland Clinic does it all via IV infusion directly into the bloodstream. Slavin does approximately 1/3 via IV infusion and 2/3 via intrathecal injections into the spinal column.)
Clinical paper (for MSC therapy use in MS and ALS):
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036569/
The in-vitro research data with MSC's as treatment for MS looks quite promising. I'm not dismissing it, but because the treatment does not include chemotherapy to ablate self-intolerant immune cells I would not personally do it as a first-attempt treatment because I think it extremely unlikely (or impossible) that it would stop the underlying MS disease process. Although. . . . . . I might seriously think about doing it following HSCT in the possibility that it may effect repair of already-damaged nerve structure & function. However, such an effect has yet to be proved or disproved in human clinical efficacy trials. Here is the small amount of preliminary phase I EDSS clinical outcome data as presented by Dr. Dimitri Karussis which is not negative, but is also not overwhelmingly positive nor consistent and is why today (without further data) I am somewhat ambivalent about the use of MSC's for MS. (click to enlarge):
However, for everyone else considering such treatment the decision is yours, not mine. I'm just glad CTCI offers actual HSCT that includes chemotherapy that has already been repeatably-proven in population studies to be effective and enable substantial EDSS improvement following transplantation. But if you decide to chance-it and go for the MSC therapy alone without first eliminating the autoreactive immune cells of your body, don't be surprised if there is little, or no positive clinical outcome beyond a placebo effect.
Here is an article & video of a Canadian woman that received MSC infusion therapy at CTCI that appears to have worked well for her specific case. Remember that each case is likely to respond differently and her case does not directly translate to anyone else. But I have to admit, this is very encouraging and I'm glad to see the work continue and available for those that choose to receive it:
http://www.ctv.ca/CTVNews/Health/20081116/ms_treatment_081116/
The following video presentation by Dr. Dimitri Karussis who works, or worked together with Prof. Slavin describes the science behind the various treatment protocols they provide, including the MSC therapy (which I personally do not favor as first-attempt treatment but would consider it following HSCT once the antigen epitope has been rendered naive via chemo ablation):
CTCI homepage:
http://ctcicenter.com/
Prof. Slavin Bio:
http://ctcicenter.com/prof-slavin-and-team.htm
Manipal Hospital, Bangalore, India
Dr. Amit Rauthan
This is a myeloablative HSCT treatment protocol utilizing BEAM + ATG
Approximate cost USD $40,000
Dr. Rauthan that oversees the HSCT patient treatment at Manipal Bagalore is experienced in BMT / stem cell transplantation from prior experience working in a hospital in Atlanta, Georgia, USA. In addition, Manipal Bangalore stem cell transplantation department has some form of cooperative relationship with the University of Minnesota. Since Dr. Rathan is a classically-trained hematologist / oncologist he knows, understands and is experienced in how to properly administer BEAM protocol autologous HSCT.
Manipal has modern medical equipment and follows internationally-accepted medical protocols. (I especially liked the good sign that they utilize positive-pressure HEPA-filtration patient recovery rooms following HSCT. Very appropriate and nice.)
Additionally, I think it important to highlight the fact that Manipal fills a currently-unmet need in the MS community in which the attractive pricing of the procedure at Manipal ($40K) will likely open and make available the HSCT procedure to many MS’ers that are otherwise unable to afford the treatment at other suitable facilities (all of which have a higher treatment price point for the same/similar treatment regimen). I’m glad to know that this (large?) niche market can be served by Manipal for those that choose this treatment route.
I have not personally (yet) met Dr. Rauthan (but have exchanged messages and video Skype with him), and have also not been to India myself (although I’m sure I’ll visit there someday). The credit for finding Manipal and Dr. Rathan to perform HSCT for an MS patient goes entirely to Richard Syrop, here in the Unted States. Richard’s wonderful wife, Bunti, was diagnosed with PPMS with a continuously-worsening disability status over time.
Based upon Richard's excellent understanding of the curative probabilities of HSCT for MS, Richard and Bunti decided to go with the (good) likleyhood that her underlying MS disease might be stopped via HSCT. As of today, Bunti has indeed experienced a halting of her underlying MS disease activity and progression, as well as some marginal, but definite and meanigful improvement of her ambulation status (actually a good result for a PPMS case).
Richard and I had a chance to frequently communicate before, during and after Bunti’s HSCT procedure at Manipal. I’m not a doctor, but from having gone through myeloablative (BEAM) HSCT for my own MS and having researched the medical treatment aspects rather thoroughly, it sounded to me that Dr. Rauthan did a superb job of managing Bunti’s (and so far two additional subsequent patients) treatment regimen and recovery. I haven't yet heard of a single medical misstep by Dr. Rathan relative to his administration of HSCT and corresponding patient care and experience. Although HSCT is normally a tough procedure for anyone to go through, Bunti and (so far) several other MS patients have completed the procedure without any life-threatening complications and are all now recovering normally, and well following the completion of their transplantation procedures. (My hat's off to Dr. Rauthan!) I’m looking forward to the day some number of months later when all these patients will likely definitively report their MS disease as halted, and hopefully reversed, as well, which is a realistic expectation. They have my sincerest best wishes, especially following the decision to tackle MS head on. Kudos to all of you! In addition to these patients already-transplanted, I am aware of more MS patients scheduled for pending transplantation with Dr. Rauthan at Manipal. Aside from the geography of India, I now personally have enough confidence in Manipal that I would seriously consider treatment here if I were currently seeking HSCT for myself.
Here is some basic information regarding Manipal and Dr. Rauthan:
Manipal Hospital, Bangalore
Dr. Amit Rauthan (BMT-experienced in the United States)
University of Minnesota BMT program opens in Bangalore, India
Manipal has set up a formal acceptance procedure for MS patients seeking HSCT. They have additionally formed a patient review committee (a common practice at many hospitals) to review applicant cases for treatment approval. HSCT being such a serious and complex procedure they want to make sure that the treated-patient is not going to be put at excessive risk while simultaneously attempting to maximize the curative benefit of the treatment. You can send a treatment request to the following Manipal e-mail address (I’m sure at some point they will ask for some personal medical info and/or medical records that you should gather together) and then they will make an acceptance decision within 2-3 weeks timeframe following review. Please specifically reference that you are interested in BEAM HSCT for treatment of your MS with Dr. Amit Rauthan in Bangalore:
You can also check out the following blogs/sites of several people that have completed, or are currently in HSCT-for-MS at Manipal:
Geoeffry DB (USA)
https://www.facebook.com/groups/113034538879355/
I just wanted to add a last note about India. . . . In a previous posting I mentioned that the Apollo Hospital network in India would also be willing to perform HSCT for those with MS. And when I contacted them in August of 2009 they did agree to do HSCT for an MS case like me, sight unseen. However, since that time the CCSVI scam craze has gotten so big and out-of-control that now Apollo appears to be refusing to to do HSCT for MS because they claim they consider it "experimental" (when in actuality it is far from experimental since it is now in final FDA phase III clinical trial), and instead are now pushing MS patients to get CCSVI treatment. Since CCSVI is not only 100% experimental with absolutely no evidence at all (none, zero, zip, nada) that there is ANY proven beneficial effect whatsoever from CCSVI treatment for MS (there is no valid clinical study data to even remotely suggest that it has any beneficial effect on MS beyond a temporary placebo effect), I am sorely dissappointed that Apollo has decided to take this hypocritical & unethical approach putting money squarely ahead of patient's health. I have now lost all respect for the Apollo hospital network in India and would never even suggest to anyone to consider treatment there. Very sad.
The A.A. Maximov Department of Hematology and Cellular Therapy, National Pirogov Medical Surgical Center, Moscow, Russia
Dr. Denis Fedorenko
This is a non-myeloablative HSCT treatment protocol utilizing Cyclophosphamide + Rituxamab or alternatively Cyclophosphamide + Carmustine
Approximate cost USD $40,000
I have spoken with Dr. Fedorenko at Maximov in Moscow on the phone to discuss his HSCT-for-MS treatment. He is a very nice and pleasant person that clearly is a very knowledgeable medical scientist and clinician and I found him to be open & helpful with my questions. Maximov/Perigov is a well-respected hospital facility. And the best news is that Dr. Fedorenko is definitely extremely knowledgeable and he clearly understands well all the fundamental medical science behind HSCT for treatment and cure of a wide range of hematologically-rooted autoimmune disorders. (Perhaps he can be thought of as providing a similar treatment service in Russia as Dr. Burt does in the USA.) Dr. Fedorenko is also well-published on the subject of HSCT treatment of autoimmune disorders, being involved with numerous and ongoing scientific and medical international symposiums and publications, a few such as listed here (there are many more than just these):
http://www.stemcellms.ru/doklad11.php
https://ash.confex.com/ash/2010/webprogram/Paper26601.html
Here is the Maximov website:
http://www.gemclinic.ru/english.php
And a web page with a little more info and a few pictures from the facility:
http://translate.google.com/translate?sl=ru&tl=en&js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&u=http%3A%2F%2Fwww.pirogov-center.ru%2Fclinic%2F5%2F&act=url
There are two English-only speaking patients that recently travelled to Moscow and received HSCT treatment for their MS from Dr. Fedorenko at Maximov. I have communicated extensively with both and they both have reported very good treatment experiences despite their inability to Speak Russian. They are Phoebe Scopes from London, UK and Amy Peterson from Texas, USA. (Coincidentally, their treatment schedules overlapped in Moscow.) They both have created very informative blogs you can read to learn about their treatment experience with Dr. Fedorenko. And based upon their reported experiences I have come to have a very high confidence level in both Dr. Fedorenko and the Maximov hospital facility. I would have no problem going here for treatment myself.
Here is Phoebe Scopes' HSCT-for-MS-at-Maximov blog. . . . . . .
http://hsctmsandme.weebly.com/about-me.html
And Phoebe providing more detail about the Maximov facility. . . . . . . .
http://hsctmsandme.weebly.com/aa-maximov-hospital.html
And Amy Peterson's HSCT-for-MS-at-Maximov blog. . . . . . .
http://amygoesninja.wordpress.com/
And here is a local news segment about Brook Slick making the trip to Moscow for the transplantation. . .
http://wearecentralpa.com/fulltext/?nxd_id=454552&fb_action_ids=4128434708108&fb_action_types=og.likes&fb_source=aggregation&fb_aggregation_id=288381481237582
Treatment inquiries should be sent to the following e-mail address where Dr. Fedorenko will receive it:
info@gemclinic.ru
Dr. Fedorenko may also be contacted in Moscow at the following telephone number:
+7-915-290-00-67
Based on my discussion with Dr. fedorenko, here is relevant info I have learned about Maximov's HSCT treatment for MS:
Maximov performs HSCT for both bone marrow malignancies (such as leukemia) and also several types of autoimmune diseases.
For cancerous conditions they perform a fully myeloablative HSCT protocol utilizing BEAM (very common around the world).
For autoimmune disorders they perform a non-myeloablative HSCT protocol utilizing primarily a combination of carmustine + cyclophosphamide. I never previously heard of this specific chemical combination being used, but it makes sense to me and seems like a reasonable treatment application. I don't see any red flags.
Maximov has ten treatment beds for treating a maximum of ten patients at one time. Five beds reserved for cancer patients, and five beds for patients with autoimmune disorders.
HSCT treatment criteria for autoimmune (MS) conditions:
- Exclude patients greater than 50 years of age
- Must be in sufficiently good health to tolerate HSCT procedure) includes good heart and renal function and generally be in good overall health),
And specifically for Multiple Sclerosis patients:
- Must not be 'severely' disabled (patient must be ambulatory with an EDSS of less than approximately 6.0)
- Will treat any evolutionary form of MS (RRMS, SPMS and PPMS); all allowed but must demonstrate active MRI lesion activity or alternatively if without active lesions must have experienced greater than a 1.0 worsening of EDSS over a period of one year.
For MS specifically this seems to me to be rational and justifiable treatment criterion.
- Maximov previously treated more than approximately 200 patients (mostly Russians) with autoimmune disorders in which a very small number (3-5) developed "serious" treatment complications (such as sepsis), of which everyone recovered. There have been no deaths or Treatment Related Mortality (0% TRM).
- Treatment appointment should be scheduled at least one month in advance.
- Maximum pre-treatment exam duration = 1 week.
- Hematopoietic stem cell PBSC mobilization (with G-CSF) = 4-5 days (2-4M HSC's / kg body weight collected).
- Peripheral blood stem cell collection / apheresis = 1-2 days.
- "Usual" total in-patient hospital stay (inclusive of all procedures) = 30-45 days.
- Approximate price = $40,000, inclusive of all items listed above.
- Language: Russian is (of course) the primary language. Non-Russian-speaking patients OK (doctors all speak English), however the nursing staff is unlikely to be proficient in English. But since all the doctors do speak some level of English and are present on a daily basis they can assist with patient interaction. Based upon their direct experience, both Phoebe and Amy have reported that the language barrier was not a huge hurdle and they all (together with heir husbands with them) were able to interact adequately as English-only speaking patients.
***************************************************************************************
I am also working to validate/verify the potential for three additional HSCT-for-MS treatment facilities. All three of which have previously treated MS patients, but I have not yet discussed the topic with them directly and am reluctant to "officially" list them on this page until I do so. So if you would like to consider treatment at any of the following three facilities, please don't rely on "my" endorsement until I have a chance to more thoroughly vett them, which I will try to do as soon as I have time. But you are welcome to pursue treatment at the following on your own if you desire. . .
---------------------------------------------
University of Cape Town (UCT) Hospital, Cape Town, South Africa
Prof. Nicolas Novitsky
Myeloablative (Busulphan) protocol
Approximate cost USD$55,000
Here is Prof. Novitsky's criteria as I currently understand it and I will verify as I have time:
- Confirmed positive diagnosis of MS
- Relapsing–remitting, secondary progressive, progressive–relapsing forms of MS
- Age between 18 and 55 years
- Disease duration [more than] 1 year
- Expanded Disability Status Scale (EDSS) between 3.0 and 6.5
- Clinical or MRI activity in the previous year
UCT website:
http://www.ucthospital.co.za/
Prof. Novitsky information:
http://www.haematology.uct.ac.za/staff.htm
http://www.medpages.co.za/sf/index.php?page=person&personcode=25331
The following is the blog of the very nice South African Bernard Cronjé that had HSCT performed there for his own MS in the latter half of 2012 in which he describes his good treatment experience:
http://bjcronje.wordpress.com/
---------------------------------------------
Akademiska sjukhuset, Uppsala, Sweden
My understanding is that Uppsala previously performed a myeloablative (BEAM+ATG) protocol, but have now tied together with Dr. Burt's Chicago MIST trial and now offer trial participants the non-myeloablative protocol (cyclophosphamide + rATG) as used in Chicago.
The Facebook page of the wonderful Swede Chrisopher Martinsson that can only be described as a fantastic success story in which he received Uppsala's myeloablative HSCT:
https://www.facebook.com/notes/christopher-martinsson/a-new-beginning/328987160453332
---------------------------------------------
Karolinska University Hospital, Stockholm, Sweden
Prof. Hans Hãgglund
Myeloablative BEAM+ATG protocol
Approximate cost USD$110,000
The following two blogs by wonderful Norwegian women that both had HSCT performed here for their own MS:
---------------------------------------------
As I mentioned previously. . . just because I am not aware of other facilities, that does not mean that there are not other hospitals that would be willing to perform HSCT for MS patients. Please feel free to look around for other (good & safe) treatment facilities if you are so inclined. You may want to use the following EBMT link to help in your search as I did (which is how I found Heidelberg University Hospital):
http://www.ebmt.org/Contents/Pages/Default.aspx
If I can help anyone with understanding more about treatment issues & options, feel free to send me an e-mail. I'll try to respond as soon as I can:
georgegoss@yahoo.com
