We catch up with former Gogglebox star Scott McCormick after he underwent HSCT treatment
On my second day in Hammersmith Hospital, my treatment began.
I had 1.5 litres of chemo drugs, followed by the 1.5 litre anti-thymocyte globulin (ATG) chaser. The ATG was far harder than the chemo – that much I will say. I had a lot of water retention that concerned the doctors. I was carrying 5kg more than usual, which meant I was holding five litres of excess fluid from the chemo and ATG infusions over the previous four days.
Immune system destroyed
At this point, my bloods were frequently checked. I was neutropenic [having a very low level of neutrophils, which are white blood cells that fight infection], with absolutely no immune system what so ever. This meant any everyday bug or virus now had the potential to really go to town on me.
This was not helped by the chemo and ATG making all the thin membranes in my body – from my gums to my rear exit – very thin, sore and swollen.
Preparing for HSCT
Here are some things I’d like to pass on to anyone due to undergo HSCT:
I was so glad that chemo smell only lasted for a week or so. The memory of it will be with me for a long time, I think. It even put me off the deodorant I was using, as I was associating it with the smells. It was a cheap one I will never use again, as I had given this some thought before I went in for the HSCT. Everything was cheap and disposable, so I could bin it after I left hospital.
At the point where I was neutropenic, I had been told by Nader, one of the brilliant nurses looking after me, that if I ever started to feel warm, I should tell someone immediately. Everyone gets a nasty infection at this stage.
So, as predicted, a couple of days after having no immunity at all, I sure enough felt warm, so I informed Nader who promptly checked my temperature and confirmed what was suspected.
He disappeared for a couple of minutes after telling me to go back to my bed. He came back with another two nurses and a tray full of strong intravenous antibiotics, and plugged them into me, with a bag being pumped into each arm simultaneously.
As this came to an end, I was asked to move off the bed, as things can become a bit soft in the bowels. As I stood, I can only describe what happened as a tap being turned on from the back end. I had no control what so ever and made a right mess.
I was told that this will happen to every person at this stage with the strong antibiotics. This made me feel a bit better, but it was so weird not having any control. I still had, before the antibiotics, some level of control of my bowels, even though my multiple sclerosis (MS) had been slowly eroding my sense of feeling and control of all things down there for some time.
So, be aware, this will be something all HSCT recipients will go through.
The treatment actually wasn't anywhere near as bad as I thought it was it going to be. Bearing in mind that the first day at Hammersmith hospital I was told to expect the worst I could imagine, and then some. I guess I can imagine some pretty dire situations, because neither the chemo nor the ATG took me there, although the ATG felt far worse than the chemo drugs.
I was told by a friend’s wife, who knows how to put things into context for a squaddie, that chemo is like Domestos bleach to the body. That’s why they put in a peripherally inserted central catheter (PICC) line to the heart. The heavy thick artery walls are robust enough to take the chemo.
The chemo would take two to three hours to administer. The ATG took between 12 hours to 16 hours to administer the same volume of fluid. This does suggest the ATG is so very powerful, and the body can only take it slowly without it harming the individual.
If you are going to have HSCT treatment, a positive mental attitude will see you through it. You must remember you are in a country of 61 million people, and you are in one of the finest hospitals on the planet, with some of the best people, undergoing a well-rehearsed procedure. You will have passed through the strict entrance requirements to even be there in the first place. You are within reaching distance of a place where MS can no longer hurt you.
Fast forward six months, and I’ve had tests which have confirmed my HSCT treatment worked. I’ll try and explain this with the following analogy. I am a car, and MS is a thug that has smashed me up a bit. The thug has been taken away by the HSCT, but the car remains damaged. This is the simplest way I can explain it. The only downside is that the car might not fully repair itself, if at all. I have my fingers crossed, though. A positive mental attitude should keep me going, and I will have another MRI next October to check my MS has not returned.
For me in the short term, I will chip away to try to get strength back. I used to be a hands-on aircraft engineer, and there was nothing I couldn't do. I want it all back, and I want it yesterday.
Visit www.youtube.com/channel/UCMK3P_VOUfDtKU-JWkoeArg to follow Scott’s HSCT journey.
HSCT stands for hematopoietic stem cell transplantation. It was first used to treat cancer, but is now used as a therapy for autoimmune diseases such as multiple sclerosis (MS).
The aim of HSCT treatment in MS is to ‘reset’ the immune system to stop it attacking the body.
You may have seen it in the news because some high profile celebrities with MS have had the treatment, including Hollywood actress Selma Blair.
What happens in HSCT treatment?
First, chemotherapy is given to the patient via an infusion in the vein to stimulate the production of stem cells in the body. This usually takes up to 10 days. The extra stem cells are then harvested from the blood and stored.
The patient then spends some time in hospital while they are given powerful chemotherapy which kills off much of their immune system. The stored stem cells are then reintroduced to the patient’s body. At this point, due to having a much weakened immune system, they are at very high risk of infection and cannot leave the hospital, are kept in isolation, and are often given antibiotics.
The hospital stay can last for a long time while the immune system is rebuilding itself – anywhere from between 10 to 160 days. Within three to six months, the immune system should gradually rebuild itself.
Who is eligible?
You can get HSCT on the NHS, but only if you meet very specific criteria.
Generally, current evidence says that the treatment works best for those who are under 45 and have relapsing MS, have had it less than 10 years, and have an Expanded Disability Status Scale of 5.5 or less.
There must be signs that the condition is active, meaning there must have been two relapses within the last 12 months, despite the person having taken disease-modifying treatment.
If you are looking for more information or support surrounding HSCT, there are plenty of Facebook communities that may be able to help...
Alternatively, you can call the MS-UK Helpline free on 0800 783 0518.
Cathy Howard updates us on the next stage of the statins trial
I was up early again, which was just as well because parking was an absolute nightmare at the station! When we got to UCL Queens Square Institute of Neurology my appointment hadn’t been logged on their computer, so John and I had to wait for about an hour and a half to allow for my records to be released and my prescription to be authorised and filled at the pharmacy. We consoled ourselves with lunch and coffee at a local Italian restaurant.
Once the appointment resumed the lovely nurse Sarah looked after me again. She took the remainder of my original prescribed statin/placebo and replaced it with 2 new bottles and a six-month diary. She took blood and my blood pressure, and Dr Tom Williams noted some headaches and nausea I’d experienced during the first month. He also checked my lungs and heart. As long as these blood tests are ok, I can start to take two tablets per day increasing from one. I was able to collect a CD-Rom with my MRI scan on. So excited as it’s been a long time since I last had one done.
As long as my GP is happy, I can have my next lot of blood tests, at the end of November or the start of December at my local surgery. A few days afterwards I’ll get a phone call at home from one of the research team to ask me a few questions. I’ll let you know how it all goes.
Healthcare services have been failing people with neurological conditions like multiple sclerosis (MS) for far too long. That’s a fact. The number of people living with neurological conditions in England is rising and will continue to increase. But, for a number of years now, neurology has not been a national priority for the NHS. Research shows that those living with progressive neurological conditions are experiencing delays in diagnosis and treatment, fragmented and uncoordinated services, limited availability of neuro-specialist rehab and reablement and a lack of psycho–social support.
This inequality is simply not fair.
The NHS RightCare Toolkit for Progressive Neurological Conditions has been developed to help change that and ensure people living with brain and nerve conditions like MS, Parkinson’s and Motor Neurone Disease (MND) get the care and support they need and deserve.
Seven charities (MS Trust, MS Society, Parkinson’s UK, MND Association, Sue Ryder, MSA Trust and PSP Association) joined forces with NHS experts to produce the toolkit. The hope is that Clinical Commissioning Groups (CCGs) will take full advantage of this unique opportunity; that they will use the practical, clear and innovative guidance the toolkit provides to tackle some of the big challenges people with these conditions face and ultimately improve healthcare services for this group, now and in the future.
If implemented in the right way, the numbers speak for themselves: up to 2,500 emergency admissions to hospital a year could be avoided for patients with these conditions as a result, with up to £10 million freed up to fund improved services.
So what does this mean for people with MS? The toolkit outlines four priorities that need addressing in MS care: improving the efficiency of disease modifying drug management, better use of data and technology to free up the valuable time of MS specialists, holistic support for people with advanced MS, and more MS specialists from different areas working together to provide joined-up care.
MS health professionals do an incredible job with the resources at their disposal and we know that many services are already delivering high quality care - the toolkit has real-life examples of best practice from across the country. But we want to help all areas reach the same high standard and make this best practice a reality for all. We will work closely with the other charities involved to support efforts to see the toolkit implemented effectively, with the shared aim of improving care for everyone living with a progressive neurological condition in England.
This blog has kindly been written by the MS Trust. To find out more about them visit the MS Trust website or if you’re living with MS and would like to share your experiences of healthcare, please get in touch with the MS Trust at email@example.com.
Hi, I’m Cathy Howard, I’m 51 and have secondary progressive multiple sclerosis (MS). I was originally diagnosed with relapsing remitting MS in 1998 at the age of 30 and I later took ill-health retirement from work in early 2015.
I use two sticks to walk short distances, or a wheelchair or scooter if I’m going out. I applied for the Simvastatin trial as I was conscious that apart from some fundraising for MS Society and MS-UK over the years, I’ve never really done a great deal for others with multiple sclerosis (MS).
The MS-STAT2 trial is a double-blind study, which means that I don’t know whether I’ll be taking Simvastatin or a placebo, and neither do the Drs who administer and regulate it. To be honest, although it would be a bonus to me if I took the drug and it worked, I’ll be happy just participating. I will be sharing my experience of participating in the trial through regular blog posts on the MS-UK blog, so watch this space!
Today is my screening day appointment (19 August 2019). I got up ridiculously early because my husband John was stressed about us getting the train with booked assistance for me in my wheelchair. Bleary-eyed we head out to the station. I was eager for my first coffee of the day.
The train was on time and we got to UCL Queen Square Institute of Neurology in London about 45 minutes early. Dr Tom Williams, MS Clinical Research Fellow, came to meet us and escorted us through the rabbit warren of corridors to the trial room. Here I had my second cup of coffee and I’m started to feel awake.
Tom introduced Dr Nevin John, MS Medical Clinical Research Fellow, who is also part of the study. Nevin advised me about the trial, what to expect and possible side effects of statins. He asked me questions, completed forms based on my replies, and requested for me initial consent forms. There is so much paperwork and record-keeping involved!
I then had a basic physical examination, including blood pressure and blood oxygen levels, and my heart and breathing listened too. My height and weight were checked and I had various vials of blood taken for testing.
I also agreed to take part in a brain oxygen study and mSteps smartphone analysis. I was wired up to the brain oxygen study machine and computer and baseline readings were taken. Then I had three separate minutes to say as many words as I can that start with a selected letter. Not as easy as you may think! From the problems I had, I expect I’ve got very little oxygen reaching my brain!
An app is being developed to accurately record walking distance and speed etc. I had a mobile phone with the app on it strapped to my arm and was asked to walk short distances. This also served for the walking part of the MS-STAT2 screening process.
All in all, it was a very interesting appointment. I was completely exhausted by the time I got home but felt like I’d actually done something productive and I’m smiling as I write this! This is it for now, but I’ll update you all on the next part of my journey very soon!
Inflammation is essential to our survival. It’s our first line of defence against the outside world. It attracts cells of the immune system to the site of danger to destroy pathogens and helps heal injury. As a short-lived response it performs excellently as protector and healer.
In multiple sclerosis (MS) inflammation is ongoing (chronic), with the myelin covering being attached by neurons wrongly identified as pathogens. The immune system attacks pathogens with oxidation. The oxidative damage causes further inflammation.
An unhealthy gut microbiome can be a source of inflammation. Boston researchers found MSer’s microbiome linked to ongoing inflammation. Luckily the microbiome is easily changed with food choices that nourish the microbiome.
Foods described below can have anti-inflammatory effects, either directly helping to resolve inflammation/oxidative stress, or indirectly by feeding our microbiome so anti-inflammatory microbes crowd out pro-inflammatory ones.
Champion foods (both direct and indirect effect)
Particularly rich dark, leafy greens contain polyphenols and antioxidants, which can directly reduce inflammation. Vegetable’s high fibre content feeds the microbiome. A small Italian trial found a high vegetable diet reduced inflammation, improved gut microbiome and helping to improve overall health.
Especially deeply coloured berries, which are potent antioxidants that can reduce inflammation. They also provide food for the microbiome, helping to keep your gut healthy. Try and make sure you are getting your 5-a-day, and aim for 10 if you can, after the NHS recently reported that 10 portions of fruit and vegetables is even better for us.
3. Oily fish
Mackerel, salmon and sardines are all sources of essential fatty acids (EFAs) omega-3s, which UK researcher found increased anti-inflammatory bacteria in the microbiome and may help directly resolve inflammation.
These are a source of required omega-6 EFA, which can be inflammatory in excess. Walnuts have a balance of omega-6 and omega-3, and research has shown they promote anti-inflammatory microbes. Research found that walnut oil reduced inflammation in a mouse model of MS.
Another great source of EFAs. Some seeds, such as flax and chia seeds have a high anti-inflammatory omega-3 content.
6. Extra-virgin olive oil
Extra-virgin olive oil is a source of antioxidant vitamin E and anti-inflammatory polyphenols. A review of multiple trials indicated that this oil could improve inflammatory disease symptoms.
Ginger has well known anti-inflammatory properties. An Iranian researcher indicated it may reduce inflammation in mice with experimental autoimmune encephalomyelitis (EAE).
It’s been in the news a lot recently and is now well known for its anti-inflammatory properties, but it has poor absorption. Consume it with healthy fats and black pepper to improve the absorption.
Indirect effect via the microbiota
9. Legumes and wholegrains
Another good source of fibre which has been found to benefit gut microbiota.
Out of the above list seven constitute the Mediterranean diet. Interestingly, the Mediterranean diet is very similar to the high vegetable diet used in the Italian study mentioned in point one. It showed an anti-inflammatory effect in MSers and reduced disability. The anti-inflammatory Mediterranean diet is being looked at by a variety of experts and particularly for people with MS.
Sharon was diagnosed with multiple sclerosis in 2007 and prompted a career change to nutrition with the goal of empowering people to take positive steps toward feeling better. Sharon aims to share her nutritional knowledge, the latest nutritional and lifestyle research and expertise from healthcare professionals. Visit Sharon’s website for more information about her and her latest articles.
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Professor Dawn Langdon asks for your help to tackle MS cognition
Many people with multiple sclerosis (MS) experience cognitive difficulties; poor concentration, trouble remembering, some call it “cog fog”. We know quite a bit about how these difficulties play out on formal tests that psychologists use. But we are less good at understanding the experience of people with MS with cognitive difficulties.
There are a number of questionnaires that report cognitive difficulties that have been designed for people with MS, and others which have been suggested that might be useful for people with MS. The point is that it will probably never be possible for every person with MS to be offered a cognitive assessment. Some of us are working towards making this happen (researchoutreach.org/articles/bicams-cognition-multiple-sclerosis). But we have to be realistic about the current situation.
We are trying to find a questionnaire that a person with MS could fill in, which could tell any health professional something useful about that person’s experience of their cognition. This could help the nurse or doctor present health information in a helpful way. It could flag up cognitive difficulties to health professionals and trigger them to monitor the additional risks that cognitive difficulties bring (poor disease management, including medication adherence; increased risk of falls and driving accidents; decreased involvement in life generally, including employment difficulties). I don’t want to sound too gloomy here. But if we are to make progress we have to have information. This is our ammunition in the fight for better services.
Take the survey
If you would like to help, are a person with MS and can spare 30 minutes, please fill in our online survey.
Also please pass this on to anyone else that you think might be interested.
This study is the MSc Clinical Psychology thesis project for two students at Royal Holloway, University of London, where I work. Their names are Tabby Mahoney and Nathalia Bosoko.
If you would like more information about cognition and MS, you could visit the MS Trust’s website www.stayingsmart.org.uk.
You could also look at the books by Jeffrey Gingold, who is an expert MS patient advocate:
These are available on Amazon and some of the profits go to MS charities.
Jeffrey has also recently done a Webinar, “Facing and Manging the Cognitive Challenges of MS”, which you can watch on YouTube.
How to get involved
If you have any questions about the survey or would like to help us with our work on cognition in MS, please get in touch (firstname.lastname@example.org). I have to ask for your understanding, because this is a busy few weeks in the university, and it might take me a week to get back to you.
On Friday morning I set off to the University of Warwick to attend the annual MS National Therapy Centre Conference.
MS National Therapy Centres (MSNTC) is a charity which represents individual therapy centres across England, Scotland, Wales, Ireland, the Channel Islands and Gibraltar. These centres provide treatments, therapies, help and support to some 15,000 peop
le living with multiple sclerosis (MS) every week.
The annual conference and AGM is a chance for therapy centres to come together, share best practice and learn from each other. The conference, which was hosted by Frank Sudlow, Chair of the charity, ran over two days and included workshops, speakers and lots of updates about the world of MS.
I was particularly keen to hear Dr Dawn Langdon speak about cognition and MS and I wasn’t disappointed. Dr Langdon is Professor of Neuropsychology at Royal Holloway University of London. Her talk included an update on what research is being carried out to discover the impact of cognition difficulties for people living with MS as well as some useful insights about how people can improve their cognition by stretching their brains. It gave me a lot of food for thought!
The conference was also a chance for me to meet up with other CEOs from the national charities… David from the MS Trust and Nick from the MS Society. It was great to be able to talk to them about their work and how they are supporting people affected by MS as well as updating them on what MS-UK is doing. I hope that we can work together in the future to reach even more people and let them know we are all here to help in any way we can.
I wanted to say a big thank you to the MS National Therapy Centres for inviting us – see you next year!
Amy Woolf, CEO
I wanted to invite you to complete our survey which launched today about loneliness and isolation.
Last year we consulted with the MS community to inform the development of our new strategy. The most talked about gap for people affected by multiple sclerosis (MS) across the UK was appropriate support to tackle loneliness and isolation. We were told that there was simply not enough support to overcome the barriers contributing toward their isolation and not enough available to help them feel a part of something, connected to the world and less lonely.
We are now beginning to look at this area and we would like to understand this issue a bit more. The voices of people affected by multiple sclerosis inform all our work and this insight is incredibly valuable as it brings us perspectives that no one else can give. I hope you will take five minutes to complete this short survey and help us stay on course to provide people affected by MS not only with what they want from us, but crucially, how they want it.
The topics of loneliness and isolation can be difficult to deal with at times, so if you would like any support at all please get in touch with our helpline. You can email the helpline, call us on 0800 783 0518 or connect with us online.
Thank you so much for your contribution,
Head of Services
Another instalment as I am taken by the train to the hallowed turf that is Hammersmith Hospital. This began with an early start at 4.45am. I know, a clock should only see this once a day. Teeth were brushed, the shower was jumped in, the beard was conditioned to an inch of its life, as it has gone really dry and coarse of late. It is feeling soft once again, albeit the purple has faded somewhat. I'll probably colour it again, but will definitely do so before the Chemo in May. Mostly so the dust pan gets to look good as it is swept up.
I am now sat on the train thinking about the need to get home in good time later today, to take the prescribed pills and the magic jab juice. I have been doing all this much closer to lunch time anyway, so I have another 6 hours, give or take before it might affect my current time scales.
As far as the side effects go, I do consider myself lucky as I am taking anti sick pills, with no sickness noted. I must say I have only been taking twice a day as opposed to the instructed three times as advised. If I had the slightest inkling of feeling sick, then I would certainly be taking them as instructed. I was told about the joint aches and pains, at the beginning too. Again this gas been kind too, don't get me wrong, if I am out pottering about town, as I was yesterday treating myself to some new jeans and a shirt. (Pandas breed more frequently than I buy new clothes by the way).
Today I am feeling aches in my left hip, my lower back and my left eye again. I assume the hip and back are from the drugs, as I was informed would be the case, by Naghma, the well informed Nurse at Hammersmith, but the left eye is blind anyway, so as long as is isn't too bad, I'll not worry about it. If it was my good right eye, then it would have my full attention and I'd pop in to hospital about it.
Peterborough hospital eye clinic have always been pretty good at squeezing me in at short notice when needed. I try not to bother them unless I am getting genuinely worried about my right eye. Either way, all the aches and pains are dealt with using paracetamol.
Well, that was close. The silence on the train woke me up...phew! God knows where I might have ended up.
Once awake, and back on my stumbley clumsy feet, I took the usual walk to the Victoria line down stairs on the far side of Kings Cross station, then get off at Oxford Circus, to get on the Central line, looking for White City. From there I get on either the No 72, or the 272 bus towards Hammersmith Hospital. All was so very smooth today in my getting here. I will say though, that I really do need to get some paracetamol. My lower back doesn't half ache. Maybe a combination of the walking a fair bit over the last few days, and my being 4 days in to the stem cell generation, and the achy bones are to be expected.
From speaking to the Nursing staff here, I am now in the prime time for the aches to be really biting down. As the day is slowly moving on, yes, I can feel those aches. Do I sound like I am whinging yet?
My bloods have been taken by Nurse Harry and they have been sent off, as I sit here wondering where I can get those paracetamol tablets, on my way home.
Ok, so I fell asleep as the bloods were sent off, and was told they'd be ready after lunch, and with the time at 10.30 now, off I trot to central London for some nice food and to kill some time. I do pass a chemist, but meh! It'll be reet.
I eventually find myself in Selfridges food hall trying to eat ramen broth, but yes my right hand is still rubbish, so I am forced to eat the long stringy noodle goodness with chopsticks using my left hand. Actually I did well, and got away with it. Now back to Hammersmith, by now I am really flagging and my back is aching a lot more than I gave it credit for. It is, every now and then, a quiet groan-worthy amount of ache. I really regret not getting some paracetamol to scoff.
Eventually I get back to Hammersmith, to be told, all my bloods are exactly where they should be, and to come back on Monday for the big stem cell removal. So I say my thank yous to everyone and make my way home, thinking I knew a sly pocket full of paracetamol wouldn't go a miss right now.
I am on the train thinking, if the aches were anything to worry about, I would have bought some. I do see the aching bones as the Body telling me it is busy generating squillions of big fat juicy stem cells for me. You see, it might be super rubbish at running and tying my shoe laces at the moment, but it can spit out stem cells to order when it needs to. Thank you Body, you ain't that bad after all. Thank you X.