Stem Cell Transplants, Moscow, and Borscht…life with Lisa in Russia.

Why Russia?

Are you cringing? Russia for medical treatment, and such a devastating procedure? YES! Why?

Many reasons, first and foremost is that I have utter faith, confidence and assurance in Dr. Denis Fedorenko 6216731_orig and his skills to perform a stem cell transplant. Secondly is the cost, approximately $40,000-50,000 depending on hospitalization and need for transfusions or plasma. Third, Dr. Fedorenko will treat patients with my type of MS at my age, something very few, if any, will do in the U.S. I have been communicating with Amy Peterson of Round Rock, Texas. She was the first person in the U.S. to travel to Moscow for HSCT, and has done beautifully! Read about her story at http://amygoesninja.wordpress.com. She is an inspiration!

The following is information provided by George Goss, the guru of HSCT here in the United States. He is the “go to” man for questions, help, support and inspiration. He too went overseas for HSCT – to Germany which is considered the best of the best. Unfortunately, Germany will not treat my type of MS.

Thank you George…

7782034_origThe A.A. Maximov Department of Hematology and Cellular Therapy, National Pirogov Medical Surgical Center, Moscow, Russia    
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

http://www.mendeley.com/research/highdose-immunosuppressive-therapy-autologous-hematopoietic-stem-cell-transplantation-treatment-option-multiple-sclerosis/
http://onlinelibrary.wiley.com/doi/10.1002/emmm.201100129/full
Based upon his publications and experience, Dr. Fedorenko has the credentials establishing him as an expert in the field of HSCT treatment for autoimmune disorders.

Here is the Maximov website:   http://www.gemclinic.ru/english.php

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 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 – although he has agreed to accept me pending MRI review

– 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) – I am on the border here, so I need to get there ASAP!

– 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.

– 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 Schedule:

– 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. An additional week is required at a nearby hotel to ensure patient health and good blood counts before traveling back to Oklahoma

40 Responses to “Why Russia?”

  1. steven

    why is age so an important part of the requirement, Like I am fit the only problem I have is balance. I am 58 yrs old are we then just left to suffer this disease? I have had it now for 24 years

    Reply
    • Lisa Stallings

      Dr. Fedorekno has now removed the age limit for MS. I was the oldest to receive the stem call transplant last summer and did very well! He has lifted it due to my success, and a woman age 64 is leaving next week for Moscow and treatment by Dr. Fedorekno. If you are interested, there is a Facebook page you can ask to subscribe to which has great information on HSCT. That is where I became educated. Search for Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases on Facebook.
      Lisa

      Reply
  2. steven

    I lied, I am 59 today,but it is good to know that he has lifted the age gap, I will have to inform the rest of the group who, go for physio every week and we are in our 50s , the only thing is the price tag for the treatment is not clear, the other question is Russia the only country that is doing this treatment?

    Reply
    • Lisa Stallings

      The procedure is done in the US in phase III clinical trials, but they will only accept under age 50 with mild cases of RRMS. Germany and India do myeloablative HSCT for $98,000, which is a harsher form of HSCT and takes a full year to recover physically. Non myeolablative (which I had) has been proven just as effective, with a faster recovery period of 3 months on average, 6 months at the very most. Russia costs $40,000; Italy also has just begun to accept MS patients but I do not know their fee. Dr. Fedorenko in Moscow was fabulous, and I put their standards up against any of the finest hospital in the US.

      Reply
  3. steven

    Thank you very much for that, I am off to see the specialist next month and will see what she has to say with Prof Pender, but it looks hopeful.

    Reply
    • Lisa Stallings

      Neurologists are not fans of HSCT, they are not educated as to the process and the benefits. Hematologists have been doing the procedure for over 20 years for cancer, and 10 years in European countries for MS. As time and news of the success spreads, neurologist will come on board. It will take a few years, however. Do not give up! It has been a life changer and saver for me!

      Reply
  4. Kim Gelbart

    Hello Lisa, My name is Kim I am 55 and have had RRMS for 5 years now I am been on Copaxone for nearly a year and follow a very strict lifestyle of very low saturated fat, meditation,vitamin D,Fish oil no Dairy no meat or chicken just plant base seafood diet which was developed by Proffessor George Jelenek who has MS himself and runs retreats to teach you about this lifesyle ,It has made a huge difference to me in two years I also have acupuncture once a week as well. I had a right hip replacment almost at the same time as my diagnosis and the MS and surgery didnt like eachother so my right leg got worse after surgery. I walk with a cane when I’m out but not a home , I’m very interested if I would be a candidate for the Stem Cell transplant with Dr Federenko, how could I find out , thankyou Lisa , kind regards , Kim

    Reply
    • Lisa Stallings

      I feel you would be an excellent candidate. I went from a cane to a walker when out very quickly. Dr. Fedorekno, or any hematologist, would require you be off Copaxone for 3 months before treatment begins. Due to lesions on the spine and brain stem, I would be wheelchair bound right now – this very day. HSCT did save me, and has restored many functions, not all of course, but so many! It costs $40,000 US dollars, but my Copaxone cost more than that. Ak me any questions, I will help in any way! Contact Dr. Fedorenko at: info@gemclinic.ru
      Also find the Facebook page: Russia HSCT for MS & Autoimmune Diseases for more help and information. It is a wonderful group who have been, or are headed to Moscow.
      Lisa

      Reply
  5. Diana Pullos

    Hi Lisa
    I am currently on Techfidera. Would I have to stop that for a certain time before going? Also, do i need a referral and records from my neurologist?
    Thank you
    Kind Regards
    Diana

    Reply
    • Lisa Stallings

      You would need to stop all treatment, except for medications for symptoms such as Baclofen, etc…, before beginning treatment. Dr. Fedorenko usually requires a 3 month cleanse of any disease modifying medications. When I first contacted him by email, I sent a brief description of my disease – date and age at onset, date of diagnosis, a full list of symptoms dated from onset to the month I applied, and list of disease modifying meds and how long I had been on each. After he answered, I sent him a CD of my most recent MRI, and a print out of the above mentioned symptoms, onset and meds. Full medical records are usually too much for him to cover, so he has, in the past, gone on the patients notes on their MS. He makes a decision based on what you have told him, and the MRI. He is an amazing physician, never will you find a anyone who cares more about helping people from divesting diseases.
      Lisa

      Reply
  6. Lita Santos

    Hi Lisa

    Thank you for your blog. I was diagnosed 1 year ago. I have 2 young children. I have pins and needles and altered sensations on my left leg and both feet. I don’t currently require aids to walk. I am overweight. Does this program insist on weight loss? I am Australian and I am on Tysabri. Would I have to come off that first?

    Reply
    • Lisa Stallings

      To my knowledge, Dr. Fedorenko does not require weight loss. I have had quite a few women whom I now call my best friends who were overweight and had beautifully successful stem cell transplants. I encourage you to proceed with an email to Dr. F. It is your best chance at recovery, and stopping progression, as well as regaining abilities permanently. You wold have to come off Tysabri for 3 months to wash it out of your system before beginning treatment.
      lisa

      Reply
  7. Kim

    Hi Lisa , can I ask you how long has it been since the end of your treatment, and symptoms how are they now ,how long were you sick for during the treatment? my main fear is infection over the isolation period of the transplant and how sterile everything is in the hospital I’m very interested in doing this next year ,is there a long waiting list ? Thank you very much Lisa I really appreciate all your advice , kind regards ,Kim xx

    Reply
    • Lisa Stallings

      I returned home August 12th last year. My symptoms now are so much better, some I have not experienced at all! I am 85% better! Only very few signs of MS remain. I still have at stutter at times, balance issues sometimes, but that is about it! ALL other symptoms are gone – no foot pain and burning, no tremors, no paralysis – all gone. I suggest you go ahead and apply with Dr. Fedorenko now, as he is booking into early October right now. That will give you time to pursue more research and questions, and will give you time to change your mind should you decide to do so – but I think you will not. It is a life saving/changing treatment.

      I experienced NO illness during treatment, only sever fatigue. Only slight nausea for a few days, and the rest of the time I was just tired. A sleep 20 hours a day kind of tired. Your body needs the rest so it is beneficial to sleep. The hospital is amazingly, over the top sterile. While in isolation ( go back and see my pics) no one comes in without owning up. Food is twice cooked to ensure all bacteria is removed, and the room cleaned daily with anti bacterial. There is not a more infection free space on this earth. The equipment used during transplant are the newest available, made in Boston, and run on Apple computers designed for this stem cell machine. I was so fearful of going to Russia in the beginning, and all hesitation was wiped away upon meeting Dr. F. He is an angel and all he cares about is helping his patients have a good quality of life, as free of MS as they can be. He did it for me!
      Lisa

      Reply
  8. steven

    Hi Lisa
    Just to let you know after your replies from my questions< I contacted my MS clinic and spoke to my consultant and she no way should I consider having this done as they do not tell you about the procedures that went wrong, so I kave made up my mind to wait a bit longer.
    I am pleased that it worked out for you and it did not go wrong.

    Steve

    Reply
    • Anonymous

      I was diagnosed just Feb of this year. I am in the process of changing Drs at the moment. My Dr did not want to speak about this procedure and literally walked out of the room while I was talking to him. The US doesn’t want a cure for this. Drug companies float more $ to Drs for pushing their overpriced immune suppressant drugs than Drs salary most times. I’m looking further into this option. I had to find and research it on my own.. still doing a bunch of research. It sounds a million times better than being stuck on Tysabri which will likely cause many other health issues and isn’t making me any better.
      I would love to speak with Lisa! I’m mailing my records and MRI to Germany next week.

      Reply
      • Lisa Stallings

        One of my doctors received $295,500 from pharmaceuticals last year! They DO NOT want a cure. This is an incredible treatment, and gave me so much more than any drug I had been on. It is amazing and has halted the disease! I suggest you try Germany, Moscow now has a long wait list. Singapore does HSCT, as does Florence, Italy – a great choice.

  9. Kim

    Thank you so much Lisa you’re a wealth of information and to me this treatment seems so much more beneficial and less dangerous than the horrible MS drugs that the neurologists are prescribing . Five years ago I was an active power walker / gym junkie and now my walking is affected in my right leg I would do anything to walk normally again without a stick . My eldest son is getting married this sept and I want to be an active grandmother one day in the near future and am willing to risk anything for that, Although you have certainly eleviated a lot of my concerns ,I just hope it will help my walking and tingly fingers , thanks again Lisa ,love Kim

    Reply
  10. Anonymous

    Hi lisa as I am one of Jehovah’s Witness and don’t accept Blood transfusions is it still possible to have this treatment without it? Would they give me something else if my blood count dropped very low? In Australia they give us Erythropoietin, also known as erythropoetin or erthropoyetin or EPO, is a glycoprotein hormone that controls erythropoiesis, or red blood cell production. It is a cytokine for erythrocyte precursors in the bone marrow. I would really appreciate your answer.

    Reply
    • Lisa Stallings

      In Dr. Fedorenko’s 280+ HSCT’s, no one has ever had a blood transfusion. I am friends with 15 of the first from the U.S. to go over, and only two of us had to receive platelets. And it was not even medically necessary, but I opted to have them due to fatigue. Hope this helps!
      Lisa

      Reply
  11. Barry McArthur

    I am just considering my options and whether or not Russia would be feasible.

    I now have two good reports on Russia but more bridges have to be crossed but I have been told that I could be fitted in January 2015.
    I will keep you posted.

    Reply
    • Lisa Stallings

      A lot of information can be gained from joining the HSCT group on Facebook, and the Russia HSCT treatment group also has a forum, but it is best to join both. The forum is moderated by two physicians so the information is accurate. And the support gained is invaluable! If you cannot find it, let me know.
      Lisa

      Reply
  12. Kim

    Dear Lisa , may I ask how old you were when you had your stem cell transplant I’m 55 but was only diagnosed at 50 I ‘m in extremely good health apart from having MS I’m terrified dr Federenko may not accept me , I don’t want to get worse I still have a long time and a lot to look forward to in my life ,like becoming a grandmother in the not to distant future, thanks Lisa , I think I read somewhere that he had lifted the age and disability limit ?

    Reply
    • Lisa Stallings

      My symptoms began at 54, diagnosed at 55 and HSCT at 56. I feel you are an excellent candidate, the earlier in your disease you receive treatment the better outcome. I suggest you contact him today. He is working on a paper and is out of the office for about 2 weeks. His wait list is one year, but well worth it. I asked to be admitted early if there were cancellations and I was! Also, check into joining the Facebook HSCT auto immune disease group, and the HSCT Russia forum for great info and support!
      Lisa

      Reply
      • Anonymous

        Thank you Lisa I have joined the group it’s a wonderful source of information , I have was and contacted George Goss as well, I get on it x

  13. Kerrie Wright

    Hi Lisa,
    I am writing to you on behalf of my nephew, Matt, who is 35 and was diagnosed with PPMS about 7 or 8 years ago. His EDSS is currently 6.0. I have been doing extensive research about HSCT for him but he is hesitant. Can you offer any advice? He has a beautiful wife & 2 gorgeous little girls.

    Reply
    • Lisa Stallings

      Join the Facebook group: Russia HSCT for MS and autoimmune diseases. A Lot of information to read in the files, contact info, and others who have been to Russia. It will be a tremendous help.

      Reply
  14. Anonymous

    Hi Lisa, my partner has been suffering RRMS for approx 10 years. He has over the past month had his medication changed from injections to tablets due to his latest MRI showing he now has 2 lesions on his spine. We had made travel arrangements to attend Kristy’s seminar yesterday but had to cancel as Chris became very unwell which we have put down to the change in his meds. The new medication, Gilenya has had adverse side affects including severe headaches daily, severe constipation and a wave like feeling to add to his many symptoms of Ms. We are very interested in going to Russia for treatment and would like to go ASAP?? We attended The Sans Emergency dept Friday evening and were seen by a Dr who proceeded to ask what we wanted him to do for my partner? He went away and came back and asked the very same question a further 2 times!! Well by the third time, I blurted out, yes I know what you can do, RING CANBERRA HOSPITAL & DEMAND THAT “THE COMMITTEE” REINSTATE THE SCTP IMMEDIATELY!!!! He told us he could not help him and we left!

    We do not want to wait until he gets more lesions and cannot walk. All info would be gratefully appreciated x Kind Regards Chris & Michelle Sydney

    Reply
    • Lisa Stallings

      Join the Facebook group: Russia HSCT for MS and autoimmune diseases. A lot of information to read in the files, contact info, and others who have been to Russia. It will be a tremendous help.
      Lisa

      Reply
  15. Paraic Heneghan

    I was diagnosed with primary progressive MS may 2010.
    My left leg is where it is bad I use stick.
    How do I go about getting HSCT.
    Paraic Heneghan

    Reply
    • Lisa Stallings

      Join the Facebook group: Russia HSCT for MS and autoimmune diseases. A Loy of information to read in the files, contact info, and others who have been to Russia. It will be a tremendous help.
      Lisa

      Reply
  16. Kate

    Do you know what other conditions he treats? Specifically, myalgic encephalomyelitis (CFIDS in the US). I tried the email to him directly but it failed.

    Reply
    • Lisa Stallings

      I am not sure about that disease. Email him again in a few days. He has been inundated as a patient appeared on 60 Minutes, Australia. The mailbox is full, but he should be able to answer mail again soon.

      Reply
  17. Kate

    Thank you. May I also ask how you got your diagnosis? I have been reading a comparison of MS and ME and they are almost identical in terms of symptoms and abnormal test results…..I can’t find a doctor. How did you find your doctor who diagnosed you?

    Reply
  18. Lisa Stallings

    It took a year and I went through two neurologists before I found one that was persistent. My MRI’s did not have enhancing lesions. The diagnosis came through a lumbar puncture. It showed elevated igG synthesis rate, but no oligloconal bands. It takes one or both to confirm MS. I had every blood test in the book and two MRI’s before they agreed to do the LP. Mine was so difficult as it came on suddenly and later in life than most MS cases, hence the PPMS diagnosis.

    Reply
  19. Heidi

    Hi Lisa
    I recently got diagnosed with MS and seriously considering the stem transplant procedure. Where do I start from?

    Reply
    • Lisa Stallings

      Join the Facebook group: Russia HSCT for MS and autoimmune diseases. A Loy of information to read in the files, contact info, and others who have been to Russia. It will be a tremendous help.

      Reply
  20. Hanne Sivertsen Flom

    Hi hi😃
    My name is Hanne And I am 45 years young. Soon to be 46😃
    31.08.1968
    I have had MS since April 1998 and I want to Take HSCT.
    My RRMS has been kind to me but there are a lot of things I can’t do And I wan’t to do everything😃
    Can you help me please Dr.F???
    With love from Norway:-)))

    Reply
    • Lisa Stallings

      Join the Facebook group: Russia HSCT for MS and autoimmune diseases. A Loy of information to read in the files, contact info, and others who have been to Russia. It will be a tremendous help.
      Lisa

      Reply
  21. Barry McArthur

    Hi,

    I am attempting to raise £40000 pounds to pay for HSCT treatment in Russia.

    I plan to have coverage of my journey on local and national press.

    I look forward to hearing from you.

    Regards

    Barry McArthur

    Reply

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