Meet Phoebe Scopes, First MS Patient from Abroad to Undergo HSCT in Moscow

orange

Hematopoietic stem cell transplantation, or HSCT for short, is provided at various centers around the world to a mix of people with multiple sclerosis.

As regular readers know, two months ago I visited the impressive facilities of the A.A. Maximov Department of Hematology and Cellular Therapy, at the National Pirogov Medical Surgical Center in Moscow. There, besides meeting Denis Fedorenko, MD, and his staff, I was able to mix with patients from the U.S., Great Britain, Australia, Norway and Italy.

But the Moscow center did not start out treating international clients. On my return home, I  got in touch with a woman who was the very first patient from another country (Great Britain) to be given HSCT for multiple sclerosis.

Her name is Phoebe Scopes. She is 46 years old and lives in London. This is the first part of her story, exactly as she told me.

Ian: Phoebe, what was your MS history prior to HSCT?

Phoebe: After experiencing almost a year of intermittent sensory abnormalities and bouts of fatigue, I was eventually diagnosed with relapsing-remitting multiple sclerosis in early 2008. With exception to these episodes, I was free of any disability during this time and, for a while, I merely considered MS as a minor and occasional interruption in my life.

Phoebe Scopes

Before diagnosis, I had heard of MS but had no idea what it was. But knowing more about it now, I understand that I was experiencing small, infrequent relapses. Thinking back, it is also extremely likely that the optic neuritis I experienced briefly six years before diagnosis was a sign and had occurred during the benign stage of disease.

I am a mother, wife and designer, and was very fit and active. I cycled six miles a day to and from work, I was a fitness boxer for 13 years and, in early 2009, a year after diagnosis — now with an EDSS of about 3.0 — I took part in a 100-km, eight-day trek across the Sahara desert. The trek was extremely challenging, but I had one of the best experiences of my life. The Sahara trek was one of those things on my bucket list, so I was also very grateful to have been able to do this before further disease accumulation.

Having experienced and overcome various illnesses growing up, I just considered MS as another one of those medical hurdles that I needed to jump over. I was no stranger to hospitals, illnesses and treatments, but for over 10 years, I had been drug- and symptom-free, always opting for nutritional intervention to maintain well-being.

My initial relationship with medications to treat those conditions brought a host of side effects, so I was reluctant to use anything for my MS, but felt overwhelmed about having this ‘incurable’ disease. One such side effect on some of the MS drugs was feeling very tired and drowsy all the time, which seemed to disable and restrict me more than the relapses I was having. So, I declined all the other drugs being offered by my neurologist, who regularly urged me to start taking them.

I would turn up to [the] clinic with articles, or would ring my neurologist to tell him about my findings regarding the drugs he wanted me to take.  The articles usually, to an extent, contradicted his information so I think that my neurologist considered me a bit of a troublemaker! So, instead of the drugs, I started researching and looking at other therapies that could help arrest my MS and tackle minor difficulties that I was beginning to encounter.

My research took me and my husband to various places in Europe and the United States, where I met and spoke with some interesting people. And while the therapies I had were initially effective, their results were short-lived. Some might call this the placebo-effect, and maybe this was the case with some, but not all, the therapies.

I just think that MS is a very complex disease of which no two people are affected in the same way, and most of the time, some of these therapies or treatments need to be repeated a few times before they stick!

Next week, I move to 2009 and beyond in Part 2 of Phoebe’s story.

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

strap-new

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/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

orange

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.

hsct

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.

new strap

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.

HSCT Plus Six Months: Daily Walks and a New MRI

From Russia with Test Results for HSCT

ms-header
Regular readers of this column will know that I am convinced about the efficacy, reliability, and safety of Hematopoietic Stem Cell Transplantation (HSCT) as a treatment for MS. In fact, a few weeks ago, you learned through this column that my decision was made; HSCT was for me.
wheelchairs

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

Dates were agreed, flights were booked, special assistance was arranged, and coach travel from my home to the airport was organized.Knowing that there are other health conditions that might make the treatment impossible, or ill-advised, I spoke with Dr. Denis Fedorenko, head of HSCT therapy in Moscow, by phone and asked his opinion. He asked me to travel to Russia so he could oversee four days of tests before making a final assessment.

But that was not enough. I had to obtain a visa from the Russian Embassy before traveling; and as a British citizen living in Spain, that was no easy matter. But, eventually, it was granted and I was set to travel.

The plane touched down at Moscow’s Sheremetyevo International Airport close to 5.15 a.m. on Monday of last week, where a hospital car and driver were waiting. Learning that this was my first time in Russia, he whisked me on a diversion into the city itself, showing me Red Square, the Kremlin, and the Bolshoi Ballet. “And that,” he said, indicating a nondescript office block, “used to be the headquarters of the KGB.”

I didn’t ask about its current use.

Pre-HSCT tests

That day was the start of the most exhaustive and exhausting series of medical checks in my entire life. They included MRI scans of my brain and spine, as well as my chest and abdomen, and ultrasound scans of the veins in my legs.

Decision day was Thursday, when Dr. Fedorenko came to my room with all the results. The key findings were:

  • I have progressive MS, but all lesions in both my brain and spine are inactive
  • My prognosis, according to Dr. Fedorenko, is that the MS is unlikely to progress and, if it does, it will only do so slowly
  • My heart (I already knew had an irregular heartbeat, or atrial fibrillation) is totally OK on one side and, overall, pumps 10 percent less blood than it should
  • My lungs operate at 90 percent capacity
  • My vitamin D level is below the usual scale

Based on the fact that my MS is inactive and that chemotherapy could pose a threat to my heart, Dr. Fedorenko took the totally understandable decision that HSCT is not for me.

“In your case, with the MS not progressing, the benefits of the treatment do not outweigh the risks to your heart,” he said.

In short, as MS progression is currently stalled with inactive lesions, for which I am grateful and in a happy place, I don’t need HSCT.

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

new strap

ian profile

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.

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.

new strap

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.

new strap

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.