Moscow calling – day one

Hi there, one and all. Greetings from Moscow.

I am sitting inside the AA Maximov Centre, one of the world´s leading providers of Hematopoietic Stem Cell Therapy (HSCT), after a journey involving one lengthy coach trip and two flights.

The plane from Madrid touched down five minutes early at 5.10 this morning. And that was quite a shock, having left home with the temperature in the mid 20s celsius, in Moscow it was just 2 degrees when we arrived.

I was met at the airport and was whisked around the city highlights before being taken to the hospital. Among other things, he showed me were Red Square, the Kremlin, the Bolshoi Ballet and what use to be the headquarters of the KGB.

I have already met Dr Denis Fedorenko’s assistant Anastasia Panchenko and I am due to meet the good doctor later. Tests start today and will continue until Thursday to determine if I am medically suitable to have HSCT at some point in the future.

My plan is to write a few words every day, so stay tuned to 50shadesofsun.com.

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ian profile50shadesofsun.com is the personal website if Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-specific news and information websites – including MS News Today. Ian  has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

HSCT can cure MS, says Moscow’s Dr Fedorenko

Last week I interviewed Dr Denis Fedorenko, the leading HSCT doctor in Moscow. I wrote this article for MS News Today, where it first appeared two days ago. It is being reproduced here just in case you missed it the first time, when it appeared under the following headline: 

HSCT Can ‘Cure MS,’ Doctor Doing Stem Cell Procedure in Russia Says in Exclusive Interview

HSCT can cure MS. That’s the view of one of the world’s foremost proponents of the very successful but, as yet, still experimental therapy for multiple sclerosis patients.

In an exclusive interview for Multiple Sclerosis News Today, I asked Dr Denis Fedorenko if he believes that HSCT is a cure for MS. His direct reply took me a little by surprise; there was no attempt to skirt around the issue. He went straight to the point.

Dr. Fedorenko and a HSCT patient
Dr Fedorenko attends an HSCT patient in Moscow.

“Yes, in my opinion, HSCT can cure the disease,” he said, before emphasizing: “That is my personal opinion.”

Dr Fedorenko is responsible for both autoimmune diseases and transplantation at the AA Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Center in Moscow, which specializes in the state-of-the-art treatment of hematological, oncological, and autoimmune diseases.

He has conducted HSCT in MS patients since 2005, and told me that many have responded well to the therapy, experiencing benefits beyond a halt in the progression of their disease, as shown by MRI scans. They have actually found improvements in their conditions, being able to do, once again, things that MS had stopped them from doing.

As just two examples of this, I have seen a video of a man repeatedly climbing up and down stairs unaided, while another patient, with whom I have spoken, told me she can now walk twice as far as she could before — with no aid — and that her balance has improved so much that she can not only stand on one leg while getting dressed but has also started to cycle again. “I had not cycled for years,” she said.

But do those improvements last? “Yes, they do,” Fedorenko said. “We have many patients who have had no MS relapses for 10 years. Even at seven to eight years they are rare.”

“Our aims are to stop the disease progressing further, actually make improvements in how a patient experiences MS and significantly improve his or her quality of life,” he said.

The center in Moscow is one of the leading clinics providing Hematopoietic Stem Cell Transplantation (HSCT) in the world. It includes autologous stem cells, in which bone marrow stem cells are harvested from the patient for transplanting later in the process. And it also involves the use of high dose chemotherapy to eliminate the cause of the disease — autoimmune T-cells — that are responsible for the nervous system tissue damage.

HSCT clinics exist around the world, with other major ones in Mexico, Israel, and the Philippines. But it does not stop there. I have heard about other clinics in Italy, Spain, and the UK. Still, the procedure itself is relatively new and under investigation in both the U.S. and the European Union, where it is not an approved MS therapy.

Currently, an international clinical trial  into HSCT is being led by Dr Richard Burt at Northwestern University in Chicago. Assisting him are collaborators at Rush University Medical Center (also in Chicago), the University of São Paulo in Brazil, Uppsala University in Sweden, and Sheffield Teaching Hospitals NHS Foundation Trust in the U.K. The Phase 3 study began more than 10 years ago, and is expected to finish in late 2018.

Exercise important so HSCT might cure MS

Dr Fedorenko stressed the need for rehabilitation exercise in the first three months following the procedure, explaining that there was a need to overcome muscle atrophy that develops when someone is immobile for any length of time.

“Our database shows that quality of life only improves between nine months to a year after transplantation.”

So, what is a “cure” as far as MS is concerned? It really hasn’t been confirmed yet. I recall that when my father was successfully treated for cancer some 45 years ago, we were told that he was considered cured after being cancer-free for five years after treatment.

Could the same be said for multiple sclerosis? Again, Dr Fedorenko was not afraid to express his views.

“Five years is key in cancer recovery and, similarly, in MS once five years has passed with no symptoms, we should start to think about it as a cure. In the same way, someone with an EDSS of 6.5 may not see significant improvement in what he or she can do but without signs of disease progression, again for five years, should also be considered cured.

“We need to get together with neurologists to define what is considered a ‘cure’ for MS,” he said.

Ian Franks

Ian Franks enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist Health & Disability blog at http://www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.