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50shadesofsun

News and Opinions about MS, Health & Disability

Drugs, risks, spending cuts, deaths, new drugs, and so much more

As we reach the start of another year, it seems a good time for me to review the last 12 months, as seen through the eyes of 50shadesofsun.com.

January

The year began by focusing on hematopoietic stem cell transplantation (HSCT). Dr Denis Fedorenko of the HSCT centre in Moscow published a guide to the procedure.

Russian Physician’s Guide to HSCT in Moscow

people withFebruary

UK government policies grabbed my attention, along with actions regarding people with disabilities and benefits to which they are entitled.

Disabilities: Government loses tribunals, then changes rules

Disabilities: Government warned forced activities ‘could make health worse’

More flock to accuse disability assessors of lying

March

New treatments came to the fore this month. Ocrevus gained approval from the FDA, while Zinbryta got the go ahead for use in the UK.

After Long Wait, Zinbryta Gains Approval in Areas of the UK

Ocrevus: Counting Down to Expected FDA Approval

April

Allegations had been made that new disability access policies at Disney parks was discriminatory. However, a court decided that the new way of doing things was perfectly ok.

Disney Disability Access Rules Don’t Break Law, Court Rules

May

MS treatments were in the spotlight once again. Questions were being asked about the drug safety and why many people choose to avoid them.

Mixed messages about beta-interferon safety to treat MS

Why are DMTs – Drugs to treat MS – Resisted by so Many?

June

My attention was caught by one of the UK government contractors trying to put the chaotic assessment process behind it. It chose to change its name but that was fooling no one.

I also looked at the much valued and desired matter of independence.

Atos tries to escape its past though superficial rebranding

Even a little independence is a great feeling

July

Risks appeared on two fronts. First, death and serious injuries to patients to the use of Zinbryta being limited in Europe. Second, people with disabilities in the UK were still facing the risk of benefit cuts.

Zinbryta use restricted in Europe after a death and four serious liver injuries

Disability benefit cuts are still a real risk

August

Issues with lack of balance and mobility means that falls are a frequent reality. However, not all falls are the same.

I also looked at MS treatments and how close we might be to finding the holy grail – a cure.

Falls – the good, the bad, and the ……

Cure for multiple sclerosis: Are we close?

September

Inside criticism surfaced about mismanagement of disability benefits. Nothing new to me but good to have confirmation from within. On the same tack, the UK government department responsible for benefits was trying to hide assessment problems.

Talking of confirmation, my theory the MS is linked to glandular fever, or mononucleosis, was backed by researchers.

Department helpline worker lambasts mismanaged disability benefits system

I said it 14 months ago, now researchers agree: MS is linked to ‘mono’

DWP fights to hide WCA ‘under-performance’ and PIP assessments

October

A number of drugs were labelled ‘rip-offs’ in a new report. These included MS drug alemtuzumab.

UK government officials proved they do not understand variable conditions, such as those experienced by people with MS.   

MS therapy alemtuzumab is named a ‘rip-off’ drug, report

Disability benefits stopped because government doesn’t understand variable conditions

November

The number of people wth MS in the USA is more than double that previously thought. Could that be similar elsewhere?

We knew UK spending cuts were dangerous but now we know that they have ben responsible for needless deaths.

Nearly 1 million Americans have MS, not 400,000 as previously thought – NMSS Study

Needless deaths caused by government spending cuts

December

Great to see the doctor who first suggested CCSVI treatment could help people with MS now agrees this isn’t true.

However, shocking to see that someone assessed as ‘fit to work’ died before the appeal could be heard.

CCSVI treatment does NOT work for MS, says clinical trial

Assessment disgrace: ‘Fit for work’ man dies before ESA appeal can be heard

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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HSCT is superior to DMTs say Swedish researchers

At last, independent researchers have endorsed autologous hematopoietic stem cell tranplantation (HSCT) as a treatment of choice for multiple sclerosis.

Well, treatment for relapsing MS, anyway.

The study “Autologous haematopoietic stem cell transplantation for neurological diseases” was published in the Journal of Neurology, Neurosurgery & Psychiatry. In it, Swedish researchers, from Uppsala University, say autologous HSCT is superior to currently approved disease modifying therapies (DMTs).

hsctOn top of that, they say, in the study, that procedure’s safety profile has improved, and is now just as good as approved medications.

So far, so good. But, from my point of view, it is only a start. The report says that the benefits of stem cell transplants for patients with progressive MS is moderate at best.

I don’t agree with the suggestion that attempts to use HSCT to treat people with progressive MS should be limited to clinical trials. The treatment is more effective with the relapsing form, but it is also successful in tackling the progressive types.

Now, we need HSCT to be approved for treating MS by the FDA and regulatory bodies around the world. We have been waiting long enough.

No evidence of disease activity (NEDA) is now a serious indicator in studies of MS therapies. It is a comprehensive measure that takes into account disease activity in MRI scans, the presence of relapses and disability progression.

HSCT scores better at NEDA

A number of studies showed that 68 to 70 percent of patients maintained NEDA four to five years after HSCT. In comparison, of DMT patients treated at Boston’s Brigham and Women’s Hospital, only 7.9 percent had NEDA at seven years.

Meanwhile, in clinical trials of newer drugs such as Tysabri (natalizumab) or Lemtrada (alemtuzumab), only 32 to 39 percent of patients maintained NEDA at two years.

Researchers noted that clinical trials or other studies of Tysabri or Tecfidera (dimethyl fumarate) found no improvements in patients’ health-related quality of life.

Meanwhile, one study of transplanted MS patients showed an improvement of nearly four times what is considered as a clinically meaningful improvement at two years. Improvements were in both physical and mental health.

So, HCST:

  • is superior to DMTs
  • is as safe as DMTs
  • achieves ‘no evidence of disease activity’ with more people and for longer than other therapies

What more do we need to know?

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Cure for multiple sclerosis: Are we close?

I keep reading about potential cures for multiple sclerosis but how lose are we? Let us take a look at the situation.

Researchers and the medical profession already know that MS is a complicated disease with numerous symptoms. Also, they know that that it is not completely understood. That being the case, it is difficult to see how a cure may be imminent.

But let’s look at the current situation with an open mind.

Recently approved

On the drug front, there are numerous disease-modifying therapies (DMTs) that are used to slow the course of the disease. The US Food and Drug Administration (FDA) has approved 15 such DMTs mostly for use in treating people with relapsing MS.

The FDA most recently approved ocrelizumab Ocrevus (brand name Ocrevus), at the end of March. This has been given the green light for treating both relapsing and primary progressive forms of the illness.

Ocrelizumab is an immunosuppressant that targets B cells, believed to have a key part in the destruction of myelin.

Patients receiving ocrelizumab also had fewer brain lesions and less loss of brain volume than the placebo group.

What’s ahead

Scientists can take 10 to 15 years to develop new medicines to the stage where they have approval of regulatory authorities to being commercially available. Clinical trials are an important part of his development process.

Some prospective therapies now in the pipeline are:

Laquinimod is an experimental drug in phase III trials for relapsing MS, and phase II

Autologous hematopoietic stem cell transplantation (HSCT or AHSCT) “reboots” the immune system in people with all types of MS. HSCT can halt the progress of the disease but does not repair damage already done.

MD1003 is high-dose biotin. It is being tested in phase III trials for both primary and secondary progressive MS and may promote myelin repair.

Siponimod is being developed for use in SPMS.

This all goes to show that research towards new MS treatments is moving fast. These new therapies include: resistance training, antioxidants, and gut microbes.

But is a cure for MS imminent?

Avures much as I wish it is just around the corner, the answer has to be NO.

DMTs help relieve symptoms, reduce disease progression and so on – but they are not cures. We maybe at a point where we are making significant progress to hope for a breakthrough soon, but nothing more.

It is a shame but I really cannot be any more positive than that.

Speaking personally, I have not yet found a DMT that I would be prepared to take. But that’s my choice, not my recommendation. As there is no cure yet, I am convinced that HSCT is the next best that is currently available.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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MS ’50shadesofsun’ website is Back in Business

back in business

Thanks to all of you who have taken the trouble to get in touch to ask about my health, and if everything is ok generally. Well, the news is that, although there was a small health issue the week before Easter, I am fine. I realise that your concern was triggered by a lack of posts on this site but that was because I have been so busy, and therefore so tired, that something had to give.

Anyway, the good news is that I am as well as multiple sclerosis allows me to be and this site is back in business.

Back in business: My sympathies

Before I go any further, I want to express my sympathies to the family and everyone affected by the death of Kristen Dyson, of Oklahoma, while undergoing HSCT in Moscow.

I am not going to go into detail here; it is enough to say that Kristen developed an extremely rare heart reaction to an element of the treatment. Despite the efforts of intensive care staff, sadly Kristen passed away.

I did talk to Dr Denis Fedorenko, head of transplants for multiple sclerosis patients at the A.A. Maximov centre, after the news broke on Facebook and it was evident that both he and his team had been deeply  affected. He took the time to explain to me what had happened but I see no need to cause more upset to anyone by going through it in detail here.

Back in business: Ocrevus not welcomed universally

On the ‘latest development’ front, we have seen the news of the approval of Ocrevus (ocrelizumab), by the USA’s Food and Drug Administration (FDA) for the treatment of both relapsing and primary progressive forms of MS. The subsequent reactions have varied from something approaching ecstasy that at last a drug has been approved to treat primary progressive, through guarded optimism to concerns over safety. Many have also expressed the opinion that Ocrevus is no better than Rituxan (rituxumab), which is at the end of its patent life and which can only be used for MS as an off-label medication. Manufacturer Genentech has attracted criticism, whether justified or not, that the two drugs are the same.

Now, although the two drugs are very similar and both work in the same way, there is a difference. Rituxumab is a chimeric antibody, meaning that it was produced from the cells of a non-human organism, actually a mouse, while ocrelizumab is a humanised antibody. Humanised antibodies also come from a non-human species, but whose protein sequences have been modified to increase their similarity to antibody variants produced naturally in humans.1

I am not going to join in the Ocrevus argument one way or the other; I’ll leave you to make up your own minds.

Of course the FDA decision only affects the USA and the rest of the world continues to wait. In Europe, the European Medicines Agency (EMA) says the approval ‘clock’ has been stopped as it is still awaiting answers to questions it asked last September. The agency says it is waiting for the company to supply the answers. Once it gets them, the EMA’s approval process will be back in business too.

1 Riechmann L, Clark M, Waldmann H, Winter G (1988). “Reshaping human antibodies for therapy”. Nature. 332 (6162): 332–323. doi:10.1038/332323a0. PMID 3127726.   Queen C, Schneider WP, Selick HE, Payne PW, Landolfi NF, Duncan JF, Avdalovic NM, Levitt M, Junghans RP, Waldmann TA (Dec 1989). “A humanized antibody that binds to the interleukin 2 receptor.”. Proc Natl Acad Sci U S A. 86 (24): 10029–33. doi:10.1073/pnas.86.24.10029. PMC 298637Freely accessible. PMID 2513570.  (This is an early example of the use of the term “humanized antibody”.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who 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.

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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.

HSCT
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.

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Phoebe’s HSCT Story: Back home (Last in a Series)

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Phoebe Scopes was the first international patient to receive Hematopoietic Stem Cell Transplantation (HSCT) therapy for multiple sclerosis in Moscow. In this fourth, and last, part of her story, we join Phoebe on her return home to the London.

Ian: What is your post-HSCT MS state from getting home until today?

Phoebe: Back home, four months post treatment, I shared video footage with my “newly appointed”  neurologist and hematologist. The video showed me the day before discharge from the hospital walking quite freely for three-four meters without the need for any kind of assistance.

By now, though, I was experiencing the latent effects of chemotherapy and was leaning heavily on two canes, so I didn’t resemble the footage at all.

I did, however, retain the improved cognitive position I showed in the hospital after treatment, but felt that I was slowly losing the physical gains realized after HSCT.

hsct
The roller coaster ride of treatment then recovery after HSCT, created and drawn by Phoebe Scopes.

For a while, I moved through different levels of wellness, sometimes feeling strong and upbeat while other times experiencing total body weakness, and a return of old symptoms often worse than they were before. I went into early menopause and my hormones were all over the place, which brought on bouts of depression. I coined this stage as the “rollercoaster” ride, and like many HSCT patients I believed that the real improvements would come once the effects of chemo had diminished.

We are told that the rollercoaster ride can last up to two years after treatment, so many have bided their time only to find that two and three years later they seem to still be waiting for significant benefits while their disease remains worse than it was before HSCT.

In some ways, I felt that my MS was continuing to progress, despite gaining some cognitive improvements early on.

I was definitely what’s known as a “responder” to HSCT, but with the return of some difficulties relating to mobility, I believed I was one of the 25% who needed further disease ablation — what I called “top-up” treatment. Top-ups are courses of chemotherapy divided and spread out over anything up to six months for the purpose of destroying those pre-HSCT rogue cells that still remain after HSCT, and are responsible for low-level immune inflammation.

After receiving top-ups, I experienced marginal improvements to my mobility again. But, as before, the benefits gradually disappeared. After this, my new neurologist advised me that more chemo could create other health complications. I definitely agreed with him so, declined another course.

It’s at this stage that I made a difficult, but liberating, decision to stop destroying my now fragile immune system with more chemotherapy, steroids and other pharmaceuticals, and start the long but achievable journey of healing my body using a natural approach.

HSCT is not for everyone, but I believe it is important that it is understood and clearly made available to patients much earlier in their disease, preferably before there is disability. This does not guarantee treatment success but it provides a stronger probability.

Ian: It’s good to hear you commenting so favorably about HSCT, but in your own case do you feel it was worthwhile having HSCT, or do you now regret having it?

Phoebe: I rarely get asked this question by family and friends, but it often comes up within the HSCT circle where either someone exploring treatment raises the topic, or one HSCTer asks the other whether they have regrets.

Most people who receive treatment have had to raise funds and take their family and friends on an emotional journey of hope for a cure. They understandably feel guilty if they are to admit the failure of treatment and a sense of disappointment can overshadow everything at this stage.

Personally, I neither regret having HSCT, nor hail it as a “miracle cure” treatment.

Yes, there are HSCTers with incredible stories about how their lives have been transformed because of treatment; people like Carmel Turner, who got out of her wheelchair and walked AND is still walking and working in a job she loves, but couldn’t do before.

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Dr Fedorenko with Phoebe during her treatment. (Pic: Phoebe Scopes).

There are others with less dramatic, yet very encouraging, stories. But I can’t ignore those for whom treatment results have been disappointing and, like me, have struggled with the side effects of the HSCT regimen.

I am glad I was in a position to use HSCT and I definitely experienced significant improvements after treatment, even though some of these were short-lived. The biggest improvement that has stayed with me is the one that restored my cognitive abilities to allow me to construct things such as this story. However, I do sometimes feel that maybe my cognitive state would have recovered on its own after the relapse I was having at the time.

So, for me, there is no clear winning side.

Ian: Phoebe, is there anything else you´d like to say?

Phoebe: Yes, thank you. As an avid researcher, my motto has always been “Knowledge is King.”

It is understandable that when faced with an opportunity to halt a disease like MS, we invest the majority of our time assessing its efficacy and safety. Of course, these two areas are the backbone of any treatment.

There have long been discussions and speculation that HSCT can cause cancer, but there is no strong evidence to support this. Yes, I have heard about a few people being diagnosed with cancer after their HSCT ,but cancer does not just develop overnight, so chances are it was already there before treatment was started. Having said this, I do recognize that maybe HSCT can accelerate the pace of existing cancers, so I feel it is right that there is always a healthy level of awareness.

I also think we need to know more about the long-term side effects of some of the drugs used in treatment. For example; Cyclophosphamide (chemotherapy drug) and Prednisone (steroid) are both known to cause peripheral nerve damage, which may be temporary, but can be permanent. If we are trying to improve our disease, does it make sense to use drugs that have the potential to damage us further?

It is also worth knowing that some of the side effects from chemo-related treatments like HSCT do take time before presenting themselves.

A number of people who received HSCT two or more years ago for example have reported being diagnosed with AVN (Avascular Necrosis). AVN is a painful destructive disease of the bone that brings with it the need to replace hips, knees and other joints, and is most often the result of using Prednisone and/or steroids.

It is my opinion that these side effects do not affect everyone and I don’t believe that this information would deter many people from receiving HSCT. But it would be good for us all to know before using these drugs whether they are being used to “manage” disease, and certainly if one is considering HSCT.

It’s well worth investigating and asking ourselves the question about the risk-to-reward ratio.

Ian: Finally, please tell us how you are, and what you are doing to look after your health today.

Phoebe: Today and for over the last six months, I have been following an all-natural protocol scientifically researched and used to treat MS and other autoimmune diseases with success.

The research and studies were carried out by the late Fredric Klenner, MD, and involve using high doses of vitamins and minerals in a completely orthomolecular practice.

Contrary to what we are told about MS being irreversible, Dr. Klenner proved that myelin can and does certainly repair when given the right ingredients in which to do so. It is a long process but can be achieved.

I wasn’t expecting much to happen for a while, but since starting the protocol, I have already experienced great improvements to many areas of my MS that were not there prior.

I am so grateful to have found this protocol so I’ve set up a Facebook page to provide information and support to anyone wishing to use alternative therapy.

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.

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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.

treatment

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.

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Phoebe Scopes, British HSCT Pioneer in Moscow, Part 2

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Last week, I introduced you to Phoebe Scopes, the very first MS patient from another country to undergo hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in Part 2,  we pick up the story of the 46-year-old who lives in London.

Ian: So, you had done lots of research. How did things then develop?

Phoebe: By late 2009, I had new challenges affecting my balance, coordination, strength and energy which eventually forced me to hang up my boxing gloves. I was devastated about this but still felt I would return to it in time.

Unfortunately, after having a bike accident and a relapse in 2010, my MS appeared to be behaving more aggressively, and I believe that around this time, I transitioned from relapsing remitting (RRMS) to secondary progressive (SPMS). By now, my EDSS (Expanded Disability Status Scale) was fluctuating around 5.5.

It was quite unsettling just how quickly MS disease seemed to take a significant hold as disability quietly crept in, but I refused to be distracted and continued with research.

Ian: How did you find out about HSCT? What attracted you to Moscow? What was your experiences with neurologists at home when deciding to have the treatment?

Phoebe: I came across some news about a lady in Australia that would shortly receive HSCT to cure her MS. I read more information and details about this and realized that I had previously stumbled on the procedure briefly some years before. I had read news that a patient in London received HSCT, contracted sepsis and lost her fingers and toes in the battle to save her life.

At that time, I had been blind to this disease called MS so this news had no relevance to me, but I do remember thinking that the treatment, which involved radiotherapy, was terrible and I would never have something as dangerous as that!

Fast forward to recent years. I was glad to hear that for HSCT, radiation had been replaced with chemotherapy which, although still a serious treatment, appeared to be a safer option.

I was excited that there was at last a treatment that talked about curing MS that didn’t involve a lifetime of interferons and steroid use.

Now struggling with relapses and fatigue, I was very interested to receive treatment and was learning that the most effective results were achieved when the therapy was used early. I found and joined a HSCT forum and from there, wasted no time communicating with others.

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Dr Fedorenko with Phoebe during her treatment. (Pic: Phoebe Scopes).

At that time, there were few places offering HSCT privately and the questions about safety were never too far away. There was also a great deal of variation in the price of treatment from one facility to another, but most places were expensive anyway and were very selective about the patients they accepted.

I learned from a group member that a facility in Moscow was thinking about opening its doors to treat overseas patients and their price was more reasonable, but this facility did not yet have a specific department designated to handle foreign clients.

I called the hospital in Moscow and requested an email address of the doctor who was responsible for HSCT inquiries and once I had these details, I wasted no time introducing myself, scanning and emailing relevant documents, and basically asking as many questions as I could.

In the meantime, I also requested an earlier appointment with my neurologist to share my findings and let him know that I wished to pursue HSCT.

As I sat across from him in his clinic, my neurologist told me that he would not authorize or refer me for this treatment because I had not first used immunomodulation therapy offered to me on a number of occasions.

He also advised me that I would be ripped off if I were to go to Russia or anywhere else abroad, and that HSCT would kill me.

I was shocked and stunned by my neurologist’s unprofessional and “unkept” response. His comments had an air of panic and concern — but not about my safety. Instead, I wondered whether he was worried about the security of his job going forward if news about HSCT got out!

Next week, in Part 3, Phoebe takes us on her visit to Moscow.

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.

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

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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.

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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/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.

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Heeding Advice About Vitamin D Supplement Results in Improvements

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