Luspatercept – lobby your local MP!

Luspatercept (also known as Reblozyl) is a drug widely used in the US, EU, Australia and Canada to treat MDS patients.

It was expected to be available in the UK by now, but last year the manufacturer, Bristol Myers Squibb, withdrew its application to NICE for licensing in the UK.  The reasons for this are unclear but believed to be commercial.

Luspatercept can be beneficial for MDS patients, especially those with a particular sub-type, and BMS’s decision to withdraw was a blow to the blood cancer community.

One of our members, Angela Wilson, has successfully lobbied her local MP, Chancellor and ex Health Minister Jeremy Hunt, who has personally agreed to take this up with current Health Minister Victoria Atkins.

The shingles vaccine is now available for those aged 50 and over with a suppressed immune system - which includes those with MDS and CMML. Your GP surgery will usually contact you when you become eligible but speak to your GP if you haven't yet been contacted.

What is the Shingles vaccine for?

The NHS website states

Shingles is a common condition that causes a painful rash. It can sometimes lead to serious problems such as long-lasting pain, hearing loss or blindness. You're more likely to get shingles, and it's more likely to cause serious problems, as you get older or if you have a severely weakened immune system.

The shingles vaccine helps:

•reduce your chances of getting shingles

•reduce your chances of getting serious problems if you do get shingles

For more on shingles see https://www.nhs.uk/conditions/shingles/ 

Shingrix non-live vaccine

People with weakened immunity receive the non-live vaccine, Shingrix, which involves two doses given 8 weeks to 6 months apart. For more information see Shingrix vaccine patient leaflet (Electronic Medicines Compendium website; PDF only, 136kb)

Important

You can get shingles more than once, so it's important to get vaccinated even if you've had it before. Don’t delay. If you are eligible, try to have your vaccine as soon as possible.

Access arrangements for Covid-19 tests have recently changed.  Eligible patients - which includes those with CMML and MDS – can now get free lateral flow tests (LFTs) at their local chemist, as these can no longer be ordered through the government website or via NHS 111.

You can either pick the tests up yourself or ask someone to do it for you.  You (or your representative) will need to take proof of eligibility, which can be your letter of diagnosis, or any consultant or GP letter which mentions your condition and/or the supportive care you are receiving.  It is possible your regular pharmacy may already have a record of your condition, but it’s worth taking proof just in case.

Dr. Shireen Kassam MB BS, FRCPath, PhD, DipIBLM is a Consultant Haematologist and Honorary Senior Lecturer at King's College Hospital, London. She is is also a certified Lifestyle Medicine Physician and is passionate about promoting the benefits of plant-based nutrition for the prevention and reversal of chronic diseases and for maintaining optimal health after a cancer diagnosis.

In this video Dr Kassam presents a 35-minute introduction to evidence-based Lifestyle Medicine. She explores how it can empower individuals living with MDS, offering practical actions to enhance health and well-being.  The session was chaired by Maureen Sturrock, Local Patient Support Ambassador (Scotland region).

Most people have their favourite dish which they could easily have a few times a week, whether it’s a very green salad or a super cheesy lasagne, the key is balance. Remember to limit processed and sugary food and drinks.  

Keep fruit, nuts, and seeds as part of your intake, as well as whole grains, healthy fats, vegetables and water. It’s also important be mindful of portion sizes. 

Watch out! During the colder months, we see a variety of new hot drinks and snacks brought to the menus of our favourite places. As amazing as a “Sweet Caramel Crunch Cake and Vanilla, Hazelnut and Chocolate Wonder Latte” sounds, be mindful of the sugar in the powders and syrups – they can be sneaky! Try to opt for more herbal teas than sugar- filled temptations.  

We’re not saying to run uphill every day, but it’s important to get moving! To support a healthy brain and improve bone and muscle strength, incorporate some movement into your daily routine. This can include walking, stretching, swimming, cycling, or badminton. It’s key to keep up with having good circulation, coordination, concentration, improved mood, and reflexes. 

Not getting enough sleep? Make it a priority to adjust your routine before bedtime. Although it is tempting and very easy to end up watching 2 seasons back-to-back, when you’re done, it could be 4am. Yikes!  

Consider setting a wind-down alarm to remind you to start getting ready for bed. Let’s say you want to be in bed for 9pm, try to start your night routine at 7:30/8pm to give yourself enough time. During this time, instead of watching television, maybe read a few pages of a book and have tea instead of sugary snacks. 

Sleep helps with improving your memory, weight management, creativity, concentration, and the feeling of being energised.  

Quality of sleep is important too, not just the eight hours. For example, drinking too many liquids before bed could have you heading to the bathroom multiple times throughout the night! 

Seeing as the body is made up of approximately 60% water, it makes sense that we make sure to get enough of it. You don’t need to be severely dehydrated in order to feel the effects. 

Constipation, brain health and levels of energy are all affected by water, try to have one litre of water a day – but avoid having a bulk of water in the evening to save you from the midnight trips to the bathroom! 

As the festive season approaches there may be more booze available at dinner than usual, but still remember that you need adequate water. 

This is a great way to relax at any time of day, meet new people and develop a skill. Hobbies can help you to avoid the feeling of being bored or engaging in habits that don’t support you having healthy, balanced life.  

You can search for clubs and groups in your local area to meet others with similar interests, such as chess or painting classes. You could try puzzles, model building collecting items, dance class or hiking adventures.

The MDS Alliance is raising awareness of myelodysplastic syndromes (MDS), a rare group of blood cancers. This year's campaign targets patients, healthcare professionals, and the general public and aims to highlight awareness about; MDS symptoms, diagnosis and treatment options, and self-management of the disease.

What is MDS World Awareness Day?

Every year on October 25, we come together with the MDS Alliance and others, to raise awareness of Myelodysplastic Syndromes (MDS).

Join us and support the campaign on behalf of MDS patients globally. There are lots of ways you can get involved; whether it's wearing one of our T-shirts for the day, sharing vital information about MDS signs and symptoms through social media, or by donating to MDS UK.  Whatever you can do will go towards improving the lives of MDS patients worldwide.

1 - Like and share our posts on social media using the hashtags below, and tag @MDSUK

2 - Download and print posters to put up in your local community

3 - Donate to MDS UK on our Just Giving page