Russian Physician’s Guide to HSCT in Moscow

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There’s good news for anyone with multiple sclerosis who is considering undergoing HSCT, especially if that involves being treated in Russia.

And that’s because Denis Fedorenko, MD, who is in charge of the stem cell transplant program for MS patients, has put together a comprehensive guide to the whole procedure at the A.A. Maximov Department of Hematology and Cellular Therapy of the Pirogov National Medical Surgical Center, in Moscow.

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Dr. Denis Fedorenko.

Autologous Hematopoietic Stem Cell Transplantation (AHSCT) for Autoimmune Diseases (AID) includes explanation of the general procedure, as well as detailed explanations of individual parts of the process. It also has a section devoted to the experienRussian Physician’s Guide to HSCT in Moscowce of the Russian team.

Other sections detail such topics as the Inclusion Criteria, Exclusion Criteria, Pre-Transplant Examination, and steps of the AHSCT treatment.

Here is one excerpt – the Inclusion Criteria:

Systemic autoimmune diseases

o Diagnosed multiple sclerosis (all variants) with EDSS score between 1.5 and 6.5, documented progression/relapses over the previous year, with or without gadolinium-enhancing lesions.

o Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) with or without paraprotein

o Severe systemic vasculitis

o Systemic lupus erythematosus

o Systemic sclerosis

o Crohn’s disease

o Other severe systemic autoimmune conditions, including  connective tissue diseases

Age 16 – 70

Adequate organ function 

o Cardiac LV Ejection Fraction >45% o Total Lung capacity > 60%

o Pulmonary artery pressure < 45 mmHg

o DLCO/VA>50%

• Absence of severe chronic infections

• Negative serology HBV, HCV, HIV

• Absence of mental and cognitive deficits and ability to provide informed consent

• Absence of gross cognitive disturbances 

• Absence of severe concomitant diseases

Three months ago, I visited the Maximov HSCT clinic to undergo tests to see if I could have the treatment. I saw the facilities and met and talked with Dr. Fedorenko, administrator Anastnasia Panchenko, other members of the team as well as patients.

My tests turned out to mean that HSCT was not suitable for me because of another health condition, But I have no hesitation in saying that, had it been possible, it is the treatment I would have chosen.

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-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.

In Moscow for HSCT: Part 3 of Phoebe’s Story

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Two weeks ago, I introduced you to Phoebe Scopes, the British woman who was the first international multiple sclerosis patient to receive hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in part 3, Phoebe takes us with her to the A.A. Maximov Department of Hematology and Cellular Therapy, at the National Pirogov Medical Surgical Center in Moscow.
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Dr Fedorenko with Phoebe during her treatment. (Pic: Phoebe Scopes).

Ian: When did you go?

Phoebe: On Sept. 17, 2012, my husband and I stood in arrivals at Moscow airport with two suitcases and a piece of paper with the address of Maximov hospital. As the first international patient to be assessed and treated, Dr. Fedorenko (Denis Fedorenko, MD) was waiting to meet us.

We made our way out to the airport car park where a group of taxi drivers stood waiting for their next job. Now about 6 p.m. on a September evening in Moscow, it was cold and the light was disappearing fast. I was extremely weak and felt completely vulnerable so, I was very grateful that my husband had his wits about him as he negotiated the fare and we got into the car.

The hour-long journey from the airport to the hospital felt like a white-knuckle ride. With his seat in an oddly semi-reclined position the driver used the roads as though he was going around a speed track and by the time we got to the crowded motorway, the driver along with other motorists, hopped on and off the hard shoulder to avoid queues.

I decided to pull the large hood of my top over my entire head before closing my eyes and minutes later, I was laughing nervously under my breath as I remembered the words of my neurologist. He was almost certain that HSCT would kill me, but treatment was now really looking like the better option here.

It was late evening by the time we arrived at Maximov hospital. This was a big hospital with a number of entrance gates around it that were now locked.

Remember that the driver did not speak English and neither of us could speak enough Russian to have a conversation, but he got out at one of the gates and pressed an intercom to speak to somebody, anybody on the other end. Getting back into the car, the driver made his way to one of the smaller wings of the hospital where the doctor and his then temporary assistant greeted us.

Ian: What was the quality of treatment and care received?

Phoebe: As mentioned earlier, the hospital was just at the beginning of their experience with international patients, so there were still some areas that were not yet confirmed, such as accommodation for carers. Dr. Fedorenko was not happy to leave my husband to check in to any one of the random hotels nearby, so invited him to stay in my room for the initial assessment period and if results were favorable for treatment, the doctor assured my husband that I would be well looked after if he needed to return to the U.K. during my isolation period of HSCT.

I grew more and more impressed with the quality of medical attention I received from the doctor and his dedicated team once on my own. The doctor spoke good English, but his staff did not speak any, yet we all found ways of communicating.

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Valuable symptom translation document for nurse and patient understanding. (Pic: Phoebe Scopes).

Before the main treatment started, the doctor suggested that he’d create a sheet. On the sheet, he would list (in English) symptoms that often occurred during chemo and next to each symptom, the Russian translation in the next column.

Dr. Fedorenko worked tirelessly and wanted to make sure that in his absence, the nurses would know what was happening, how I was feeling, and whether they needed to call him. Nothing was too much trouble for the doctor and this put me completely at ease.Before the main treatment started, the doctor suggested that he’d create a sheet. On the sheet, he would list (in English) symptoms that often occurred during chemo and next to each symptom, the Russian translation in the next column.

I didn’t know what to expect being on my own where no one else spoke English. I thought I would be very bored during treatment … sick and bored because reading books or magazines triggered headaches and fatigue and my dexterity was labored, making writing difficult. So, I decided to use my laptop to keep an account of my HSCT experience in isolation, in Moscow.

With my design background, I combined illustrations with daily entries, which kept me as busy as I needed to be and provided good distraction when things were tough. I called this “my diary in isolation.”

I soon got to know all the staff; the cleaners that left NO surface unattended and nurses working on the ward and I watched as they maintained the highest levels of care and dedication required when looking after seriously sick patients. I will never forget their kindness.

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Phoebe with catheter inserted, ready for stem cell collection. (Pic. Phoebe Scopes).

In the days after receiving my last round of chemo, I was given back a whopping 10 million stem cells that were collected and harvested before the matter of ablating my old immune system was initiated.

A day later, the first thing I noticed was that my head “fog” and fatigue had lifted to leave behind a great deal of clarity and energy. My cognitive abilities also fully returned, allowing me to add simple numbers again, work out general problems in my head and multitask without the need to find a dark room or sleep afterward.In the days after receiving my last round of chemo, I was given back a whopping 10 million stem cells that were collected and harvested before the matter of ablating my old immune system was initiated.

My vision was clearer, my balance was better and my limbs felt lighter. As a result of these physical improvements, I walked a few meters unaided.

Before I was finally discharged, I felt surprisingly energetic and remember thinking that this was not how someone that had just received chemotherapy should be feeling. The doctor, seeing my new-found energy, carefully reminded me that the cocktail of drugs such as antibiotics, steroids and pain killers taken during treatment, were still to an extent supporting me.

He advised me that once some of these drugs were reduced or removed completely, I would likely experience a turbulent period of extreme symptoms that would continue while I built a new immune system.

Dr. Fedorenko with Phoebe as she prepares to fly home. (Pic: Phoebe Scopes).

Dr. Fedorenko with Phoebe as she prepares to fly home. (Pic: Phoebe Scopes).

The day that my husband and I left the hospital to return home, Dr. Fedorenko waved us off as the taxi drove away. I remember how he stood watching the car until we were out of sight. I know that he was already worrying about how I would manage the flight home. I was wrapped up from head to toe for the journey and wore a surgical mask, and while I was looking forward to going home, I was strangely already missing my isolation room that had been my secure home for six weeks.

In part 4, we join Phoebe on her return home.

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-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.

Heeding Advice About Vitamin D Supplement Results in Improvements

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Home from Moscow, strangely contented

Yesterday was a long and tiring day, returning home to the sunny and south of Spain from the colder temperatures found in Moscow.

With the help of two members of the support team, I left the hospital at 7am, which was 6am in Spain, eventually getting home at 10.30pm. Believe me, 16½ hours of travelling and layovers is a tiring experience which is probably why it was gone midday before today woke me from my slumbers.

Being in Russia, in the AA Maximov HSCT clinic, was an experience I am glad to have had, but nothing comes up to the delight brought about by being home again. Home with Lisa, the love of my life.

In the clinic, bonds are quickly established between patients at various stages of the process and, even though only there for assessment, I immediately found myself welcomed as one of the community.  And I now have new Facebook friends so we need never lose touch.

MRI brain scan. This is a stock picture,not one of mine,

MRI brain scan. This is a stock picture,not one of mine.

Several people have sent me comments since my assessment result was revealed – that I would not be accepted to have HSCT. Some have said how sorry they are that I cannot have the treatment; others have expressed their pleasure that the MRI scans showed that my lesions are inactive and that my future is looking good according to Moscow’s Dr Fedorenko.

So, how do I feel? Strangely, contented.

The fact that my lesions, which exist in both brain and spine, are inactive is great news in itself. And to have Dr F tell me that my prognosis for MS is no, or in the worst case very slow, progress is something that I had never dreamed could happen.

So, in short, I am in a good position.

On top of that, I had so many checks on various internal organs that I know now exactly what is wrong in much more detail than before.  The scans, x-rays and other tests – also show that there is nothing unwanted, nothing that should not be there.

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50shadesofsun.com is the personal website of 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.

Moscow calling – day five

My adventure in Russia, staying at the AA Maximov centre, that provides Hematopoietic Stem Cell Transplant (HSCT), is over. Friday is devoted to flying to Spain and then a 3 hours 40 minutes coach journey home.

You’ll probably know that my trip to see Dr Fedorenko, Anastasia, and the incredible team was to have various medical checks and a clinical assessment. This was because both my wife Lisa and I are convinced of the value of the therapy and wondered if I could have it. Doubts existed because I have a heart condition among other medical hurdles.

Dr Denis Fedorenko with assistant Anastasia Panchenko.

Dr Denis Fedorenko with assistant Anastasia Panchenko.

So, I arrived early Monday morning to start the most intensive series of medical tests in my life. They were carried out on my brain, spine, chest, abdomen, heart, lungs, kidneys, liver, veins, blood and urine. I was MRI scanned, nuclear scanned, x-rayed, and more.

It was a busy few days that drew to a close yesterday afternoon when Dr Fedorenko came to give me the results.

On the plus side, although I have a progressive MS, the disease is not actually progressing at the moment as all the lesions are inactive. In fact, Dr F told me that the MS might not progress further but, if it does, it is likely to do so extremely slowly. He also said my age is on my side. Childhood MS is very aggressive but in older people it isn’t. Hmm, does that mean at 63 that I am an ‘older person’? Ouch! (Nudge by Lisa to remind me that I’ll be 64 in less than four weeks; thank you for the reminder sweetheart!)

On the negative side, the tests revealed that the intensive chemotherapy that is a vital part of HSCT would be an unacceptable risk for my heart. In a nutshell, HSCT is not for me or, at least, not for my heart while the MS remains inactive.

Am I disappointed? Yes, that I cannot have the treatment that I consider to be the best we have available. But No, having discovered that I have no active lesions, and being armed with the comprehensive file of results to give to my doctors as well as a list of recommendations made by Dr F himself, I feel relaxed.

Everyone who goes through the transplant procedure is presented with a New Life badge adorned by an iris flower. I saw him present these at Thursday’s birthday party. Yesterday, in a parting gesture, he thanked me for supporting HSCT and pinned one to my polo shirt.

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50shadesofsun.com is the personal website of 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.

Moscow calling – day four

Wow, Thursday already, the last day of my clinical tests. Just one to go this morning, a nuclear heart scan.

This is an unknown procedure to me but checking with the US National Heart, Lung, and Blood Institute revealed all. It says:

A nuclear heart scan is a test that provides important information about the health of your heart.

For this test, a safe, radioactive substance called a tracer is injected into your bloodstream through a vein. The tracer travels to your heart and releases energy. Special cameras outside of your body detect the energy and use it to create pictures of your heart.

Nuclear heart scans are used for three main purposes:

  • To check how blood is flowing to the heart muscle;
  • To look for damaged heart muscle;
  • To see how well your heart pumps blood to your body.

So, now we know!

Almost time for American filmmaker Brandon Fowler to receive back his stem cells. He was one of three celebrating his stem cell birthday yesterday, October 12.

Almost time for American filmmaker Brandon Fowler to receive back his stem cells. He was one of three celebrating their stem cell birthday yesterday, October 12.

Talking of ‘knowing’, the moment of truth will arrive this afternoon when Dr Fedorenko will explain all the results and say whether or not I am suitable to have HSCT. Despite the doubt expressed in yesterday’s post, active lesions are NOT a prerequisite in Moscow, so that alone won’t go against me.

Now, it’s just a case of ‘wait and see’.

Three patients here had their stem cells returned to them yesterday and so, in accordance with tradition, everyone here got together to celebrate their ‘stem cell birthday’. Dr F led the proceedings, congratulated those involved and said that yesterday three more people were free of MS. It was quite a moving get-together in which I was delighted to take part.

In Moscow, the HSCT patients and staff at the AA Maximov centre become a family (no, that’s not too strong a word for it), into which I was warmly welcomed. Whatever happens this afternoon, whatever the outcome of my assessment, being a member of that family will stay with me forever.

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50shadesofsun.com is the personal website of 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.

Moscow calling – day three

Wednesday marks the halfway point in my journey of tests and clinical assessment at the AA Maximov centre in Moscow. Of course, I am looking forward to getting the results, although the MRI scan results are known already.

The programme of tests is not complete yet but most are now behind me.

Yesterday was the most intensive day of the week, with tests on my urine and blood, lungs, x-rays, ultrasound and the 24-hour cardiac monitor that was removed in my room this morning before I even got out of bed.

My left knee gave way last night, in my room, meaning that there was a close encounter with the floor. This is nothing unusual for me but it caused consternation among the staff, one of whom was just passing my door when It happened. Even though it was nothing out of the ordinary for me, it was still the first thing that Dr Fedorenko talked about when he visited me this morning.

mriMore importantly, part of that discussion concerned the results of my MRI scan from two days ago. It’s important to remember that this was the first such test since my diagnosis 14 years ago.

The scan showed lesions, some quite large he said, but added that they are not active.

Active lesions, those that are just forming or expanding, can cause a wide variety of symptoms, depending on where they are located and how big they are. Inactive means exactly that, they are not growing and so the MS symptoms should not be increasing nor worsening significantly.

I know that results of the MRI scan mean that HSCT is unlikely for me, as active lesions are almost always a prerequisite of the treatment. Still, news that there are no active lesions needs to be looked at positively.

Dr F is not expecting my symptoms to deteriorate quickly or at any time soon.

Another positive outcome of this series of tests is that I will have received the most thorough, most comprehensive, health check of my life so far. I say ‘will have’ because they are not finished yet.

More news tomorrow.

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50shadesofsun.com is the personal website of 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.