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HSCT in Moscow, Day by Day

ms-headerDoesn’t time fly? It seems only yesterday that I was preparing to go to Moscow, yet tomorrow will be three weeks since my return. (Note: Now four weeks).

I have written enough about my experiences at the AA Maximov center so, today, we’ll take a look at how HSCT progresses, step by step.

The following is reproduced from the Moscow clinic’s instruction schedule. I hope that you find it interesting.

Meals:

8.30 – 9am          Breakfast

12pm                     Second breakfast

2pm                       Lunch

6pm                       Dinner

Steps of Treatment

Stem cells stimulation – 4 days (sometimes 5-6 days, depending on the results of stem cell collections) in combination with infusion of steroids at 11am (1 dose – 200 ml liquid for 20-40 min).

Also, patient takes 1 antacid pill twice day 30 mins before food (before breakfast and before dinner).

G-CSF stimulation injections (subcutaneous) at 11 pm and 3 am.

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That’s me in my new wheelchair in the HSCT centre in Moscow, with Dr Fedorenko and assistant Anastasia.

Insertion of special catheter in neck for stem cell collection and chest X-ray control.

Collection of stem cells (for 1 or 2, sometimes 3 days), (we need to collect 2 or more million hematopoietic stem cells per kg of body weight) .

Removal of neck catheter and insertion of new catheter for chemotherapy and further treatment.

Chemotherapy (4 days).

1-2 days of rest (receiving only supportive medication infusions twice a day).

From the beginning of chemotherapy: patient takes oral medications 3 times a day (antiviral, antibacterial, antifungal, PPI gastro protection).

Pills for breakfast —  1 antacid pill before food. Other pills — after food. Pills for lunch — 1 pill after food. Pills for dinner — 1 antacid pill before food. Other pills — after food. Patient has additional oral medications on Mon, Wed, Fri — co-trimoxasole (2 white big pills — morning, evening). Patient has 2 supportive medication infusions in the evening.

Food Allowed during treatment: Most food from outside the hospital is suitable.

Foods to be Avoided during treatment: Fresh fish, e.g., sushi, raw meat, un-pasteurised milk or milk products, see note below. Fast food outlets, fresh vegetables and fruits.

Day of transplantation. Patient should avoid food after 12 pm on this day. Nurses Will clean and prepare room for transplantation.

Isolation. Patient should never leave the room. Patient should keep the glass door closed. Medical staff will clean the room every day. Patient’s suitcases will be removed. Patient should heat up food (approx. 10-20 seconds) in the microwave before consuming. Patient should use a special solution for mouthwash (mix half of cup of red solution with cap of water). Patient should use provided clorhexidine solutions for washing body — big bottle for genital area and small for legs/arms/body. Our staff will change bedding and wash clothing every day.

A patient must inform medical staff immediately of any problems or changes in condition.

Food Allowed during Isolation: Tinned food, e.g., vegetables or tuna, Bread, Coffee, Tea, Dried fruit, Fruit Juice, Spices, herbs, Lollies/sweets, Nuts — roasted and salted. Processed food, e.g., muesli bars, packets of soup, noodles, Milk and Yoghurt conforming to hospital standards.

Food Restrictions during Isolation: Fresh vegetables and fruits, Milk and Yoghurt products that don ‘t conform to hospital standards. Raw nuts, toasted muesli — unless it is microwaved first – Fresh fish, e.g., sushi, raw meat.

Patient receives one infusion of Rituximab (for 5 hours) after recovery of leukocytes (1 or 2 days before discharge).

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

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/didorder-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.

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.

 

 

Moscow calling – day two

It’s Tuesday morning and a busy day lies ahead of me here in the AA Maximov centre in Moscow. That’s what Anastasia told me yesterday afternoon as she was about to go home after a 10 hour working day that started at 7am.

And, as if to prove it, this morning I was wakened by a nurse so to give a urine sample. Next, it was time for blood tests but eating until after the samples had been taken. In a bizarre bit of psychological torture, there was a warning that the catering staff may bring my food but I was not allowed to touch it until told it’s ok to do so.

As it has turned out, Galina arrived and took nine blood samples before my breakfast arrived. Yes, nine samples! No idea what tests are being carried out but I have never had so many samples taken before. It certainly seems to be thorough. Still not allowed to eat though, other tests demand that too!

Last night, well early evening, I went through the MRI scanning procedure. Because many people don’t like going into the confined space of the ‘tunnel’, Dr Fedorenko offered me a sedative but I knew what to expect and declined politely.

It was just as well as, even without a sedative, my own snoring woke me three times during the hour long scan. You can tell, I was really tense!! Actually, the only problem was that restless leg syndrome, that often attacks in bed, decided to kick in.

Talking of Dr F, he and I met several times yesterday. We had, of course talked before when I interviewed him for Multiple Sclerosis News Today – but that was by telephone, so it was good to meet face to face.

It was immediately obvious that my previous impression of the man, as dedicated and compassionate, was entirely accurate. Moscow HSCT veterans often describe him as kind and lovely, I can see why and, like them, am happy to have him looking after me.

Dr Denis Fedorenko.

Dr Denis Fedorenko.

We had a chat about my own case and he said that the whole point of all the tests are to see whether or not the benefits of HSCT will outweigh the possible disadvantages in other areas, such as my heart. He explained that chemotherapy drugs, a vital part of HSCT, could have negative effects on a heart with different problems. Atrial fibrillation, he continued, is not in itself a contraindication but he wanted to be sure that there was no other problem.

“MS is a chronic disease that HSCT can cure,” said Dr Fedorenko, “but it is a disease that does not kill.”

He continued: “Our two aims here are to stop MS and improve quality of life. There is no point stopping MS if the therapy is likely to cause or add to problems elsewhere.”

To him, the outcome of the treatment is more important than relieving patients of the $50,000 currently charged.

Dr Fedorenko cares!