HSCT for MS from the Inside: A Patient’s View

 This article, written by me, first appeared in Multiple Sclerosis News Today on July 12.

Anyone considering HSCT (hematopoietic stem cell transplant) for MS might like to know what they can expect. But let’s remember that, while such transplants for MS patients are available in clinics worldwide — from Mexico to the Philippines and Singapore, and from Israel to Russia — HSCT remains an experimental treatment that lacks formal approval from health authorities.

Of course, the very first thing to do is choose where you prefer to be treated and to make contact with that clinic. If Moscow is the choice you make, you will then receive an application form that asks for a great deal of information about your state of health — and that’s all health, not just your MS details.

This information helps the doctors make decisions about whether you are suitable for the therapy and could mean that you may be asked to supply further information. Only after the preliminary procedure is completed and you are determined eligible for the therapy, will you receive notification with a date for your diary.

But being accepted does not mean that you are added to the end of a long line. “We want to handle more difficult, more urgent cases quickly,” said Dr Denis Fedorenko, who is responsible for autoimmune diseases and transplants at the AA Maximov Center in Moscow.

Julia Browning flew to Russia from her home in the Bahamas in mid-April for HSCT, a procedure that costs about $45,000 (an increase of $5,000 since 2014). I asked her to explain the procedure from a patient’s viewpoint.

Julia Browning.
Julia Browning.

“When you first arrive, there are three days of testing before you meet Dr Fedorenko to see if you have the final approval for treatment,” she said. “I found that a nervous time, the waiting. When he told me that my treatment could go ahead, I just burst it tears. Dr Fedorenko held me until I calmed down.”

Julia had this advice for future patients: “Once in Russia, relax, believe in the treatment and have faith in doctors and hospital staff.” And, I suppose that applies to other clinics, too.

Then the work really begins: Four days of stem cell stimulation in combination with steroids, and two G-CSF stimulation injections daily; antacid pills before breakfast and dinner; insertion of a neck catheter followed by an X-ray; and collection of stem cells (2+ million per kg of body weight).

‘New Life’ birthday celebrations

Once sufficient stem cells have been collected, which can take one or two days, the neck catheter is removed and a new one inserted for chemotherapy. This is followed by four days of chemotherapy.

“You then get one to two days of rest with supportive medication infusions twice daily and you do need it,” said Julia.

Dr Denis Fedorenko with his assistant Anastasia Panachenko. Anastasia is also a former patient because of MS.
Dr Denis Fedorenko with his assistant Anastasia Panchenko, who is also a former MS patient.

Then, at long last, the “Day of Transplantation” arrives. Julia smiled, remembering. “New Life birthday celebrations follow the transplantation,” she said.

“Next, time away from other patients. Isolation. The number of days depend on each patient’s blood work.

“After release from isolation, it’s almost time to say goodbye to the doctors, staff and fellow patients and head for home. I say ‘almost’ because you receive one infusion of Rituximab after recovery of leukocytes and before hospital discharge,” Julia said.

But that’s not the end, as each patient is given instructions to help continue recovery. The instructions cover such things as diet, exercise, and medical checkups, including MRI scans. “Yes, all that,” she said, “and Dr. Fedorenko and Anastasia are only a phone call away.”

Julia is one of about 500 autoimmune disease patients, mostly MS, who have received transplants in Moscow. Dr. Fedorenko said: “Approximately 400 MS patients have been given HSCT, divided 50-50 between Russian and international cases.” Another 100 patients with diseases such as rheumatoid arthritis, systemic lupus erythematosus, Crohn’s disease and chronic inflammatory demyelinating polyneuropathy (CIDP) have also been treated.

The Moscow clinic claims that its HSTC success rate is over 90%, and treats both RRMSand progressive MS patients. Fedorenko said progressive MS is clearly more aggressive and difficult to treat.

How well have those patients done since their transplants?

“We started with our first MS patients in 2005 and we now have patients who have shown no sign of relapses for 10 years. We have seen relapses after seven and eight years, but these are very rare,” Fedorenko said.

HSCT for MS patients set to almost double

Now, the center is set to expand. News of the Moscow center’s expansion plans were unveiled to Multiple Sclerosis News Today by Dr. Fedorenko: Ten new patient rooms will be opened during August and September. “We’ll then be working on two floors,” he said.

Currently, the A.A. Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Center can handle up to 15 patients at any one time. Of those, just 10 are patients living with one of many autoimmune diseases, including multiple sclerosis. The remaining five rooms are for cancer patients.

Although the new rooms won’t be working at full capacity straight away, they will all be used in January.

“From October some of the new rooms will be in use but in the New Year we’ll be able to take seven more autoimmune cases a month,” said Dr. Fedorenko, close to doubling the number of people who can be treated at any one time.

The clinic staff includes five doctors, 46 nurses, and 29 other staff members.

 

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2 thoughts on “HSCT for MS from the Inside: A Patient’s View

  1. I have RRMS. Diagnosed in 1998. I want so badly to find out if I would be a candidate for this procedure! My full name is Rachel G Thibodeaux, 218 Longleaf Drive, Broussard, LA 70518
    337-280-3838

    Like

    • Hi Rachel, I cannot advise you mdically but suggest you contact the various cehtres to make enquiries. If you are on Facebook there are various HSCT groups which have contact information in their files section.

      Like

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