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What needs to be done for rare and less common cancers? Join our Do you C us campaign!

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MDS Patient Support

Rare and less common cancers account for nearly half of new cancer diagnoses

They affect people of all ages, genders, ethnicities and locations. However, the nature of these conditions means that people can often face a range of issues, such as recognising symptoms, obtaining a diagnosis, receiving the most suitable treatment or getting appropriate levels of support.

‘Do You C Us?’ aims to unite Pfizer, Cancer52 and its member charities to raise awareness of the challenges facing people living with rare and less common cancers and highlight the need for change to address these.

Kes' Story: Watch the video

MDS Patient Support

"I first had strange blood test results in my early twenties back in the 1980s but it wasn’t until many years later that my GP started to investigate my continuing strange results. It took them two years of prodding and poking me before they diagnosed my condition. MDS, a form of blood cancer, is usually a condition older men get and so at first they thought there was something wrong with my pituitary gland and I was given a brain scan. Finally, in 2000, I was sent to Kings, a centre of excellence, and they confirmed I had MDS.

I was put on ‘watch and wait’ where the doctors monitored my condition rather than taking any action at that point. It is a horrible term because it’s like you are waiting for something to happen. It’s like the sword of Damocles hanging over your head and it can fall at any time. Active monitoring is a much more positive way of putting it."

MDS Patient Support

"Unfortunately, my condition progressed and I have suffered several bouts of sepsis, infection and flu. When all this started, I was a young fit football player. I never walked anywhere, instead I used to run. I rode a big motorbike. I worked full time, sang in a choir, volunteered with St John Ambulance, was a Venture Scout Leader as well as playing and training hard with my football. I played for Millwall Lionesses and went on to play for Charlton Ladies. After all these years of cancer being my constant companion, I now live a very different life.

In October 2016, I had a stem cell transplant. My little sister was my donor. I am a priest in the Church of England, but I haven’t been able to work since the transplant and am living with many ongoing consequences of my treatment and cancer, including needing to use a walking stick, mobility scooter and hearing aids.

I count my blessings that I am still breathing. I am thankful to have seen my daughter and grandchildren grow up. I take things on the chin and get on with it. And I try to help and support others with the condition. I’m not just the sum of my blood results."

What are we asking from government and MPs?

What needs to be done for rare and less common cancers?

  1. In the NHS Long Term Plan, the NHS committed to diagnosing 75% of all cancers at stage 1 or 2 by 2028. In order to meet this target, improvements are required across all cancers – including rare and less common cancers.
  2. Work should be undertaken to identify people 'missing' from the system, including people with rare and less common cancers. People must be reassured that it is safe to come forward for treatment.
  3. Cancer must remain a Government priority. Cancer services and the cancer workforce, including those for people with rare and less common cancers, should receive sufficient investment and funding for the future. This must be set out in the next Comprehensive Spending Review.
MDS Patient Support

Invite your MP on Tuesday 29th June: Online parliamentary event on MDS & other rare cancers

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MDS Patient Support

Parliamentary Event relevant to MDS – Do you C us?

  • Date & Time: Tuesday 29th June 2021 at 2pm
  • Platform: virtual meeting via Zoom

A great opportunity to alert, and involve, your MP to the needs of patients with rare and less common cancers!

The ‘Do You C Us?’ campaign aims to amplify the voices of people living with rare and less common cancers.

Rare and less common cancers comprise 47% of all cancer diagnoses

The wide list of rare and less common cancers includes all cancers except for the four most ‘common’ (breast, bowel, lung and prostate).

There can be a lack of awareness of the difficulties of those living with these cancers, including recognising symptoms, obtaining a diagnosis, receiving the correct treatment, and getting appropriate levels of support. There are also the additional challenges presented by the COVID-19 pandemic, and the need to encourage people to ask to see their GP if they have concerning symptoms.

This is why the ‘Do You C Us?’ campaign was launched: to raise awareness and support change on behalf of those living with rare and less common cancers.

MDS Patient Support

What are we asking from government and MPs?

This is what we will ask:

  1. In the NHS Long Term Plan, the NHS committed to diagnosing 75% of all cancers at stage 1 or 2 by 2028. In order to meet this target, improvements are required across all cancers – including rare and less common cancers.
  2. Work should be undertaken to identify people 'missing' from the system, including people with rare and less common cancers. People must be reassured that it is safe to come forward for treatment.
  3. Cancer must remain a Government priority. Cancer services and the cancer workforce, including those for people with rare and less common cancers, should receive sufficient investment and funding for the future. This must be set out in the next Comprehensive Spending Review.

The event will be chaired by Paul Bristow, MP and will provide an opportunity for policy makers to learn more about the key challenges facing those living with rare and less common cancers. It will also provide an avenue to discuss appropriate measures we can take to improve care through greater collaboration with policymakers.

This event is a non-promotional event organised and funded by Pfizer UK. The campaign is led by a partnership of Pfizer UK and Cancer52, an alliance of nearly 100 cancer charities. It is funded by Pfizer UK, but all decision-making regarding the content and materials used is taken jointly by both organisations.

IMPORTANT for our MDS community

MDS will feature heavily, as Kes Grant, one of our MDS UK Committee Members, was chosen to present her MDS story!

Many of you will be familiar with Kes, who is very active on social media, and through her regular blog: Where angels fear to tread

Watch Kes' story:

Please alert your MP and invite him/her to attend the event

Parliamentary Event: Do you C us?

Date & Time: Tuesday 29th June 2021 at 2pm

Further details for MP’s: If you have any queries, or to attend, please contact either jennifer@brightertogetherconsulting.co.uk or laura@brightertogetherconsulting.co.uk

Best to invite your MP via an email to the constituency, but also via social media, if you use it.

Don’t forget that family members can invite their MP as well.

It is an opportunity to raise issues such as late diagnosis, lack of a dedicated Clinical Nurse Specialist, lack of access to the oral chelation drug Exjade in some parts of the UK – which is a complete anomaly - or any other aspect you have struggled with.

MDS is truly the ‘Forgotten Cancer’, as parts of PHE (Public Health England) are reluctant to run Quality of Life and Satisfaction surveys with MDS patients, fearing that these patients may not have been told that MDS is a blood cancer. We need to run such surveys to obtain change in services and improvements regarding chronic understaffing.

Thank you for your support.

Important news for MDS patients: Government update for the extremely vulnerable, 3/6/2021

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Full latest update online can be found here:

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

Below is the exact text provided by the government. Mainly, announcing that shielding is paused.

However, we still advise to be extra cautious, whilst we wait for more robust results about the efficacy of the vaccines in blood cancer patients, and specifically MDS patients.

The SOAP clinical trial being conducted by King’s College Hospital will provide some initial information very soon. They are testing MDS patients 2 weeks after their second vaccine, checking on both antibodies and T-cell response, to establish the exact level of efficacy of the vaccines.  Further tests and analysis will be conducted 6 months and 12 months post-vaccination.

Another important update: if you have received a letter from NHS England, or your hospital trust, stating that you have been taken off the list of extremely vulnerable patients, and you are concerned, please contact your haematologist and GP. You can request to be placed back onto the list. A small number of longer term post-transplant patients have reported receiving such a letter recently.

As ever – if you are employed, and experiencing any issues with your employer, please know that help is available. You can carry on working from home, or your employer must provide a safe environment for you to return to work. Please check on the section below for details.

More help and lobbying work is underway via the APPG on Blood Cancer and the APPG on Stem Cell Transplantation, to raise awareness of the situation for blood cancer patients:
https://www.henrysmith.info/news/launching-inquiry-impact-covid-19-blood-cancer-services
Keep checking our website for news, and make sure you are registered as a member, and receiving our eNewsletter.

Lastly – if you live in certain areas of the UK, where the new COVID-19 variant is spreading – please be extra cautious (see details below).

Any specific issues – please contact us, so we can report the problem to NHS England directly: info@mdspatientsupport.org.uk, or call 02077337558.

MDS UK team

Government communication: What has changed

Shielding is currently paused. Although the advice to shield has ended, clinically extremely vulnerable people must continue to follow the rules that are in place for everyone.

We are also advising clinically extremely vulnerable people to continue to take extra precautions to protect themselves. You are advised to follow the practical steps described below to minimise your risk of exposure to the virus.

Guidance on meeting family and friends has been updated, with a greater emphasis on personal responsibility. From 17 May, close contact with friends and family will be a personal choice, but you are encouraged to exercise caution. You should consider the guidance on risks associated with COVID-19 and actions you can take to help keep you and your loved ones safe. There is more information on meeting friends and family available.

If you’re in an area where the new COVID-19 variant is spreading (applicable to everyone – not just vulnerable groups)
This new variant is sometimes referred to as the variant first identified in India. It is spreading fastest in:

The new COVID-19 variant spreads more easily from person to person. To help stop the spread, you should take particular caution when meeting anyone outside your household or support bubble.

In the areas listed above, wherever possible, you should try to:

  • meet outside rather than inside where possible
  • keep 2 metres apart from people that you don’t live with (unless you have formed a support bubble with them), this includes friends and family you don’t live with
  • minimise travel in and out of affected areas

Vaccination

Everyone on the Shielded Patient List should already have been offered a COVID-19 vaccine. If you have not yet received your first dose, please contact your GP or book your vaccination appointment online. If you have received your first dose, you should still ensure you take up your second dose of the vaccine when it is offered to you. Having two doses should further increase your level of protection.

For children aged 12 to 15 years, vaccination may be appropriate for those with severe neuro-disabilities. This option should be discussed between parents/guardians and the child’s clinician or GP. For other children aged 15 and under, whilst further research is being done, vaccination is not yet recommended.

No vaccine is 100% effective and therefore even if you have had both doses, there is still no absolute guarantee that you will not become ill from COVID-19. As such, you should continue to take the extra precautions set out in this guidance to help protect yourself.

Socialising inside and outside the home

Guidance on meeting friends and family has been updated for everyone. From 17 May 2021, if you are meeting friends and family (as a group of 6 people or 2 households indoors, or as a group of up to 30 people outdoors), you can make a personal choice on whether to socially distance within your own group. However, social distancing requirements continue to apply in the workplace, and in businesses and public venues. There is more information on meeting friends and family available.

As someone identified as clinically extremely vulnerable, it is important that you continue to be cautious when meeting others. You should think about the risk of catching or passing on COVID-19 both to yourself and to others before meeting people you do not live with. You can take steps to make meeting family and friends safer, such as:

  • meeting outside if possible, as the particles containing the virus that causes COVID-19 are quickly blown away which makes it less likely that they will be breathed in by another person
  • making sure the space is well ventilated if you meet inside; open windows and doors or take other action to let in plenty of fresh air. Please see the COVID-19: ventilation of indoor spaces guidance for more information
  • considering whether you and those you are meeting have been vaccinated – you might want to wait until 21 days after your second dose of a COVID-19 vaccine before being in close contact with others
  • working from home where possible
  • washing your hands regularly and avoid touching your face

You are encouraged to go outside for exercise and can do so with people from outside your household, subject to the wider rules on social contact. You can find tips and advice on staying active and eating healthily at NHS Better Health.

Try to reduce the amount of time you spend in settings where you are unable to maintain social distancing with people outside of your group, or where other people’s activities may reduce their likelihood of maintaining social distancing.

You can continue to form or maintain existing support bubbles if you are eligible.

You can find more information online about how to stop the spread of coronavirus.

Work

Everyone is currently advised to work from home where possible.

If you cannot work from home, we are no longer advising that you do not attend the workplace. Your employer is required to take steps to reduce the risk of exposure to COVID-19 in the workplace and should be able to explain to you the measures they have put in place to keep you safe at work. Some employers may introduce regular testing of employees as part of these measures. You may also want to consider how you get to and from work including if it is possible to avoid using public transport during rush hour.

Separate government guidance has been issued on how employers can make workplaces COVID-safe, including how they can maintain social distancing and a system of risk management in your workplace. The Health and Safety Executive (HSE) has also published guidance on protecting vulnerable workers, including advice for employers and employees on how to talk about reducing risks in the workplace.

If you need support to work at home or in the workplace you can apply for Access to Work. Access to Work may provide support for the disability-related extra costs of working that are beyond standard reasonable adjustments an employer must provide.

If you have access to occupational health and employee assistance programmes in the workplace, these services can also provide you with a range of health support and advice for your physical and mental health needs.

The Coronavirus Job Retention Scheme (furlough) has been extended until 30 September. You may continue to be eligible throughout this period, even when shielding is paused, providing your employer agrees. The Self-Employment Income Support Scheme (SEISS) has also been extended until 30 September.

From 1 April you will no longer be eligible for Statutory Sick Pay (SSP) or Employment and Support Allowance (ESA) on the basis of being advised to shield, given the lifting of shielding measures nationally. You may be eligible for SSP or ESA if you are sick or incapable of work, either due to coronavirus or other health reasons, subject to meeting the eligibility conditions.

If you have concerns about your health and safety at work then you can raise them with your workplace union, HSE or your local authority. Where employers are not managing the risk of COVID-19, HSE and local authorities will take action which can range from the provision of specific advice, issuing enforcement notices, stopping certain work practices until they are made safe and, where businesses fail to comply with enforcement notices, this could lead to prosecution.

The existing employment rights framework provides protections against discrimination, unfair dismissal and detriment. Specific guidance has been published for employers and workers on work absences due to coronavirus (COVID-19).

The Citizens Advice Bureau also has information about your rights at work and how to solve problems in the workplace. If you have concerns you can also get advice on your specific situation and your employment rights by visiting the Acas website or calling the Acas helpline on 0300 123 1100.

School, college and other educational settings

It is important that children attend school for their education, wellbeing, mental health and long-term development. Clinically extremely vulnerable pupils and students should have returned to their school or other educational setting. This includes early years provision, wraparound childcare and applicable out-of-school settings. Children who live in a household with someone who is clinically extremely vulnerable are not advised to shield and should have returned to school or college on 8 March.

Where parents are concerned about their child’s attendance, they should speak to their child’s school about their concerns and discuss the protective measures that have been put in place to reduce the risk. They should also discuss other measures that can be put in place to ensure their children can regularly attend school.

The use of rapid lateral flow tests allows us to identify individuals with coronavirus (COVID-19) who do not have symptoms, which make up around a third of all cases. Finding asymptomatic cases, along with other infection prevention and control measures such as social distancing, can help us manage the spread of the virus.

To safeguard the health of the teaching workforce and keep as many staff, pupils and students in school and college as possible, we have made rapid lateral flow tests available to schools and colleges. Lateral flow tests can also be accessed directly for households, childcare and support bubbles of primary and secondary school pupils and for households, childcare and support bubbles of primary and secondary school staff. This testing will also help keep safe those in the community who are clinically extremely vulnerable and their families.

All secondary schools and colleges are continuing to put in place a range of protective measures to help minimise the risk of spreading COVID-19. These include social distancing, handwashing, use of face coverings in specific situations, bubbles, enhancing cleaning, ventilation and managing confirmed cases.

All education settings have implemented a range of protective measures recommended by Public Health England (PHE) which, when followed, create an inherently safer environment for early years children, pupils, students, staff and families.

Travel

If you need to use public transport, you must wear a face covering unless you are exempt. Consider travelling outside peak hours to reduce the number of people with whom you come into contact.

If you do travel, walk or cycle if you can. For longer journeys, or if you are unable to walk or cycle, try to minimise the number of people you come into close contact with.

You may want to avoid car sharing with people from outside your household or support bubble, and ensure that you use a face covering when using taxis.

Going to shops and pharmacies

While you are not advised to avoid going to the shops, you may wish to continue using online delivery for food and essential shopping, or to ask family and friends for help. If you do go out to the shops or pharmacy, consider going at quieter times of the day. You must wear a face covering in all shops unless you are exempt.

If you have already registered for priority access to supermarket delivery slots using the Shielding Support website or through your council by 31 March, then we can confirm that the participating supermarkets will continue to offer priority access until 21 June. After this date individuals can continue to book deliveries from a supermarket.

You might still want to ask friends, family or volunteers to collect medicines for you. The NHS Volunteer Responders programme is still available to help support those who need it. Volunteers can collect and deliver shopping, medication and other essential supplies. Call 0808 196 3646 between 8am and 8pm, 7 days a week to self-refer or visit NHS Volunteer Responders for further information. There may also be other voluntary or community services in your local area that you can access for support.

If you require additional care and support

It is important that you continue to receive the care and support you need to help you stay safe and well. Providers of social care and medical services are making every effort to ensure services remain open and as safe as possible.

You should continue to seek support from the NHS for your existing health conditions. You can access a range of NHS services from home, including ordering repeat prescriptions or contacting your health professional through an online consultation. To find out more visit NHS Health at home, or download the NHS App. If you have an urgent medical need, call NHS 111 or, for a medical emergency, dial 999.

It is also important to look after your mental health. Go to the Every Mind Matters website for advice and practical steps that you can take to support your wellbeing and manage your mental health during this pandemic and beyond. The Let’s Talk Loneliness website also has a variety of tips, advice and further resources that you may find helpful.

If you or someone you care for experiences a mental health crisis, we urge you to make contact with a local health professional immediately. NHS Mental Health Trusts have established 24/7 telephone lines to support people of all ages to get the help they need, when they need it.

Any carers or visitors who support you with your everyday needs can continue to visit. They should continue to follow the guidance on how to stop the spread of COVID-19 at all times.

You can also access additional support from your energy supplier. Energy suppliers are required by the regulator, Ofgem, to hold a register of customers in a vulnerable circumstance, called a Priority Service Register. If you are clinically extremely vulnerable you can be added to this register. For information about how to be added to the register and the additional services your supplier can provide you, please visit Ofgem’s website.

Telecom providers are also required by their regulator, Ofcom, to support their vulnerable customers. For information about the additional services your supplier may be able to provide you as a vulnerable customer, please visit Ofcom’s website.

If you are struggling as a result of Coronavirus please visit www.gov.uk/find-coronavirus-support or contact your local council to find out what support is available.

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A new therapy in early stages of development could help MDS patients to control iron levels

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MDS Patient Support

Research FOR Patients
-For an informed and empowered opinion-
Have you made your clinical paper accessible yet?

Thalassemia, Myelodysplastic Syndrome (MDS), and Iron Overload

Thalassemia and MDS are both rare diseases that prevent a person from producing enough healthy red blood cells. Low levels of healthy red blood cells, known as anemia, result in less oxygen being delivered to different parts of the body. This can cause symptoms such as excessive tiredness and weakness. It can also lead to other serious health problems, such as heart disease.

People living with thalassemia or MDS can also store too much iron in their bodies, leading to a phenomenon called ‘iron overload’, which damages organs such as the heart and liver. Both conditions are typically treated with regular blood transfusions, which add to the problem of iron overload.

Iron chelation therapy removes excess iron from the body using special medicines. While it helps reduce the amount of iron in the blood for people with thalassemia or MDS, it does not treat the underlying cause of the condition or stop it from progressing. There is, therefore, a need for therapies that directly address the biological drivers of disease.

About SLN124 and the GEMINI II study

SLN124 is a gene ‘silencing’ therapy – one that is designed to temporarily block a specific gene’s message that would otherwise trigger an unwanted effect.

In this case, SLN124 aims to temporarily ‘silence’ TMPRSS6, a gene that prevents the liver from producing a particular hormone that controls iron levels in the body – hepcidin. As hepcidin increases, it is hoped that iron levels in the blood will decrease, which could in turn allow more healthy red blood cells to be produced, thereby improving anemia.

In preclinical studies, SLN124 has shown positive effects on improving levels of red blood cells and reducing harmful iron levels.
SLN124 is now being studied in the GEMINI clinical trial program. GEMINI II is a phase 1 study to investigate the effects of SLN124 in people with thalassemia or myelodysplastic syndrome (MDS), whose bodies produce fewer healthy red blood cells than normal and who can store too much iron in their bodies.

Silence Therapeutics is developing a new generation of medicines by harnessing the body's natural mechanism of RNA interference, or RNAi, to inhibit the expression of specific target genes thought to play a role in the pathology of diseases with significant unmet need.

Silence Therapeutics has announced positive data from GEMINI Phase 1 Study of SLN124 in healthy volunteers

  • Data showed SLN124, an siRNA which targets TMPRSS6, was safe and effective in reducing plasma iron levels and had a long duration of action.
  • Data support ongoing phase 1 study of SLN124 in patients with thalassemia and myelodysplastic syndrome (MDS)
  • First clinical data from Silence’s proprietary mRNAi GOLD™ platform
  • Two more clinical data readouts anticipated this year

SLN124, an siRNA which targets TMPRSS6, is in development for the treatment of iron-loading anemia conditions, thalassemia and myelodysplastic syndrome (MDS).

The GEMINI phase 1, randomized, double-blind, placebo-controlled, single-ascending dose study evaluated the safety and tolerability of SLN124 (1.0, 3.0 and 4.5 mg/kg doses) in 24 healthy volunteers (18 active and 6 placebo). Pharmacokinetic parameters and pharmacodynamic biomarkers of iron metabolism were also measured to assess reduction in iron.

Initial data from the study showed all doses of SLN124 were generally well-tolerated with no serious or severe treatment emergent adverse events (TEAEs) or TEAEs leading to withdrawal. TEAEs did not appear to be dose dependent and the majority were mild, including transient injection site reactions which resolved without intervention.

Notably, up to an approximate four-fold increase in average hepcidin and 50% reduction in plasma iron levels were also observed after a single dose of SLN124. Effects on hepcidin and iron appear to be dose dependent and were still observed at the end of the 8-week study at all dose levels, indicating a sustained and long duration of action.

These clinical data support preclinical findings which demonstrated SLN124 effectively improved red blood cell production and reduced anemia by increasing levels of hepcidin – a key natural regulator of iron balance and distribution in the body.

Silence Therapeutics expects to measure red blood cell production and effects on anemia in the ongoing GEMINI II phase 1 study of SLN124 in people with thalassemia and MDS, who unlike healthy volunteers have significantly elevated iron levels.

Mark Rothera, President and CEO of Silence Therapeutics, said:

“These data represent the first clinical data from our mRNAi GOLD™ platform and underscore the promising potential for our technology to deliver precision medicines. We look forward to further data in patients anticipated from both of our wholly owned clinical programs later this year – the GEMINI II study of SLN124 for iron-loading anemia conditions and the APOLLO study of SLN360 for cardiovascular disease due to high lipoprotein(a).”

Giles Campion, M.D., EVP, Chief Medical Officer and Head of Research & Development of Silence Therapeutics, said:

“Today’s results confirm the strong preclinical profile of SLN124 in humans – we observed excellent safety, robust gene knockdown expressed by up to an approximate four-fold increase in average hepcidin along with a 50% reduction in serum iron levels and a durable effect which lasted throughout the study. We are encouraged by these data in healthy volunteers and the opportunity for SLN124 to potentially address iron-loading anemia conditions such as thalassemia and MDS.”

John Porter, M.D., Prof. and Consultant Haematologist, University of College London Hospitals, says

“Despite advances in our understanding of thalassemia and MDS, there are no existing treatments that specifically target the underlying mechanisms of these conditions as a way to improve the degree of anemia. There is a major unmet need for a therapy that can provide safe and continuous control of iron balance and distribution as a way to improve the efficiency of red cell production. I’m encouraged by data from the SLN124 study in healthy volunteers and look forward to further clinical testing.”

Low Blood Platelet Count and its Treatment

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MDS Patient Support

Low blood platelet count in MDS

Platelets are disc-shaped elements in the blood that assist in blood clotting. During normal blood clotting, the platelets clump together (aggregate).

A normal platelet count in a healthy individual is between 150,000 and 450,000 per microlitre of blood.
Normal Platelet Count (PLT): 150-450 x 109/L

In MDS, the bone marrow is usually more active than normal, yet the blood cells it produces are not healthy (we refer to that as ‘dysplastic’), they do not work as well as they should and many die either before they reach the bloodstream or shortly afterwards. This results in the number of blood cells in the bloodstream being reduced. This is referred to as a ‘cytopenia’.

About half of MDS patients will have a reduced platelet count at diagnosis, this is called thrombocytopenia.

MDS Patient Support

Scanning electron micrograph of blood cells. From left to right: red cell, activated platelet, white cell. (Wikimedia Commons: Electron Microscopy Facility at The National Cancer Institute at Frederick (NCI-Frederick)

Low platelet count: symptoms and treatment

Whether the number of platelets is low or the platelets function poorly, it means that bruising and bleeding can sometimes be a serious problem in MDS.

If you have a low platelet count, it is usually advisable to avoid blood-thinning agents and non-steroidal anti-inflammatory drugs. However, this should be discussed with your doctor as there are exceptions where the benefit you will receive from these drugs outweighs the risks.

Platelets can be transfused but because they only last about four days, they are not routinely given even when the platelet count is very low. However, if you have an infection, are on blood thinners or have suffered from bleeding, you might benefit from platelet transfusions to keep your platelet count at a higher level. Your doctor or nurse will inform you when this is necessary.

Latest advances in treatment

In a recent scientific paper, "Thrombocytopenia and platelet transfusion in myelodysplastic syndromes", Kathleen Cheok, Prof. David Bowen and colleagues,  studied the clinical and haematological data from patients on the South Australian Myelodysplastic Syndrome Registry with respect to thrombocytopenia and its treatment. Full article in Transfusion (September 2020)

The authors observed that platelet transfusion continues to be the cornerstone of bleeding treatment for patients with severe thrombocytopenia, and to prevent bleeding in patients at high risk of bleeding complications.

They also summarise the alternative therapeutic options to platelet transfusion:

• Antifibrinolytics such as tranexamic acid, typically in patients with mucosal bleeding, either as treatment or prophylaxis.

• Thrombopoietin (a hormone that regulates platelet production) or its analogue Romiplostim, which has been proved to improve platelet counts and reduce bleeding episodes and platelet transfusions in lower-risk patients with MDS, with an acceptable medium-term safety profile. (1) (2)

• Androgens (male hormones) such as danazol, which have been reported to improve the production of blood cells and platelets, particularly thrombocytopenia, in MDS as in aplastic anaemia.(3) (4) (5). Since its efficacy varies among studies, androgens are not widely used.

• Disease-modifying therapies, such as hypomethylating agents, chemotherapy, or bone marrow transplant, which seek to raise platelet count by inducing remission of MDS.

In terms of future developments, the authors suggest the ideal approach to treat severe thrombocytopenia in MDS would be to use a safe and effective drug to raise platelet counts to levels not associated with haemorrhage.
They add: "It is likely that evidence on supporting thrombocytopenic patients with MDS will accumulate from retrospective studies, prospective registry data, and the best that we can do in designing less than-perfect trials".

References

1. Giagounidis A, Mufti GJ, Fenaux P, et al. Results of a randomized, double-blind study of romiplostim versus placebo in patients with low/intermediate-1-risk myelodysplastic syndrome and thrombocytopenia. Cancer. 2014;120(12):1838–1846.
2. Kantarjian HM, Fenaux P, Sekeres MA, et al. Long-term followup for up to 5 years on the risk of leukaemic progression in thrombocytopenic patients with lower-risk myelodysplastic syndromes treated with romiplostim or placebo in a randomised double-blind trial. Lancet Haematol. 2018;5(3):e117–e126.
3. Chabannon C, Molina L, Pegourie Bandelier B, Bost M, Leger J. Hollard D. a review of 76 patients with myelodysplastic syndromes treated with danazol [see comments]. Cancer. 1994; 73(12):3073–3080.
4. Chan G, DiVenuti G, Miller K. Danazol for the treatment of thrombocytopenia in patients with myelodysplastic syndrome. Am J Hematol. 2002;71(3):166–171.
5. Stadtmauer EA, Cassileth PA, Edelstein M, et al. Danazol treatment of myelodysplastic syndromes. Br J Haematol. 1991;77: 502–508.

The Terrific Return of Cabbage Patch 10 Mile Race!

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Fabulous to have Cabbage Patch 10 back again. We so missed it!

Thank you to the organisers, Stragglers Running Club, for a terrific event, in particular Kevin, and all the marshals.  As well as Sport Systems teams.

Thanks to the wonderful runners, in particular those donning the red MDS UK shirts, and those who may do it next year!

A massive THANK YOU for the ongoing support to the charities. Such a brilliant day.

Here are some of our wonderful runners:

  • Rob who finished in 1hr7min!
  • Alastair who breezed through the 10miles (after 3 full length marathons last month!)
  • Caitlin, Moni and Russell of course, and many others.
  • Bernie, Romit and Jo, so good to see you again!

Sophie Wintrich
CEO
MDS UK

A word from our dear Caitlin

"Cabbage Patch 10 did MDS Patient Support Group so proud this year.  The Bearcat Running Club were out in force again with many supporting our charity by wearing our tops and donating their entry fee to us.  It was a joyous day, seeing everyone together again and the MDS word was definitely spread about within this large running community."

Cabbage Patch Run 2021: The Best Pics!

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These pics were taken by the talented Ian Trowbridge, who was able to get along to the Cabbage Patch 10 race, take photos and support the runners, near Ham House. Thanks so much Ian!

The Iconic Cabbage Patch 10 Mile Race

The Cabbage Patch Race... You are probably wondering why it’s got such a funny name! Well, it’s named after the Cabbage Patch Pub in Twickenham, a well-known haunt of anybody who is a rugby fan going to the world-famous Stadium. The race itself was originally set up by the owners of the Cabbage Patch Pub and is almost as old as the world-famous London Marathon. It’s had some pretty significant winners too! Sir Mo Farah, no less, back in the day! One of the intriguing prizes at this event is the presentation of enormous cabbages to the winners, often with some fairly amazed looks on the athletes' faces.

This is the seventh year that MDS UK has been chosen as one of the charities the event supports and it’s our ‘signature’ event. This year we hope to raise enough money to keep running our services for MDS patients, as COVID has affected our finances badly, with our main fundraising events during 2020 being cancelled.

We hope that we can encourage family members, if not the patients themselves, to come along, support MDS UK and enjoy the day.

Russell Cook, who took part in the Cabbage Patch Race several times, and is a former MDS patient, as well as Deputy Chairman and Trustee of MDS UK, told us:

The race starts in the centre of Twickenham and heads out towards Richmond with some very pleasant sections along by the river. It’s quite flat and fast which is probably why it appeals to so many club runners. Apart from the first half mile or so, where the runners pretty much take over the roads, most of the race is held on open roads and paths - although I can testify that traffic is not really a problem!

There is a great vibe to this race, it’s very community orientated, and very popular with committed club runners as well as fun runners (and not forgetting old codgers like me….). And it’s extremely well organised, with an enormously enthusiastic and committed bunch of marshals urging the athletes on ...

What do our runners say?

Eva Boyd and Ken Pearson:

A fantastically well organised event with many supportive people and encouraging marshalls right round the course. The weather was pretty grim but it didn't spoil the race and finishing definitely felt like an achievement! It was a real privilege to be involved with MDS UK and we would both be more than happy to fundraise again for this wonderful charity.

Joseph Ogbonna:

Great cause to support. Warm reception from MDS Patient Support team, in the form of Sophie who seemed to be everywhere with her smile. Fantastic race atmosphere with runner camaraderie enroute and the singing at the end topping it all.

Owain John:

When a loved one was diagnosed with the rare disease MDS, a condition about which my family and I (and countless others) had previously not heard, it was difficult to know where to turn for information. In addition to the first-class care and support provided by the haematology unit at the University Hospital of Wales, we have found the information provided by MDS UK, through its patient handbook, newsletter and website, to be invaluable. The charity's work, both in promoting knowledge of MDS and in supporting patients and their families, is truly inspirational. I'd like to think that the funds I raise as a result of running the Cabbage Patch 10 will represent a small but helpful contribution to its ongoing efforts.

Astra Zeneca vaccine & low platelets/blood clot risk: Should MDS patients be concerned?

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MDS Patient Support

Following news on the extremely rare risk of blood clots/thrombosis in patients who had the Astra Zeneca vaccine, we are posting several statements by the MHRA, JCVI and BSH on this topic.

We have also asked a number of MDS experts, whether MDS patients should be concerned.

MDS experts' opinion

The consensus from the MDS experts is that the mechanism of action leading to low platelets in MDS is different, so the type of low platelet count associated with the vaccine is not the same, and would suggest currently there is no change in the guidance for MDS patients.

In addition, the blood clot issues are largely confined to younger women.

So - as you will read in the MHRA statement, if you are a younger woman with MDS, or have a history of blood clots, or are on blood thinners already, do seek additional advice from your haematologist before having the 2nd vaccine.

Everyone else is advised to go ahead and have the 2nd dose of the vaccine, as the benefits far outweigh the extremely small risk of these blood clots, especially as the 2nd dose has been shown to improve efficacy in blood cancer patients.

The MHRA are now issuing updated guidance for healthcare professionals on how to minimise risks, as well as further advice on symptoms for vaccine recipients to look out for 4 or more days after vaccination.

Report from the MHRA - blood clots and Astra Zeneca vaccine

‘By 31 March, 20.2 million doses of the COVID-19 Vaccine AstraZeneca had been given in the UK, meaning the overall risk of these blood clots is approximately 4 people in a million who receive the vaccine.

The data suggest there is a slightly higher incidence reported in the younger adult age groups and we are advising that this evolving evidence should be taken into account when considering the use of the vaccine.’

The benefits of vaccination continue to outweigh any risks but the MHRA advises careful consideration be given to people who are at higher risk of specific types of blood clots because of their medical condition.

As a precaution, administration of COVID-19 Vaccine AstraZeneca in people of any age who are at higher risk of blood clots because of their medical condition should be considered only if benefits from the protection from COVID-19 infection outweighs potential risks.

Anyone who experienced cerebral or other major blood clots occurring with low levels of platelets after their first vaccine dose of COVID-19 Vaccine AstraZeneca should not have their second dose.

Anyone who did not have these side effects should come forward for their second dose when invited.

While the MHRA continues to investigate these cases, as a precautionary measure anyone that develops symptoms after vaccination is advised to seek prompt medical advice, such as:

  • shortness of breath, chest or persistent abdominal pain, leg swelling
  • blurred vision, confusion or seizures
  • unexplained pin-prick rash or bruising beyond the injection site

Furthermore anybody with new onset of severe or persistent headache that does not respond to simple painkillers starting four days or more after vaccination should speak to their doctor.'

Read more via the link below:

https://www.gov.uk/government/news/mhra-issues-new-advice-concluding-a-possible-link-between-covid-19-vaccine-astrazeneca-and-extremely-rare-unlikely-to-occur-blood-clots

JCVI - Astra Zeneca and blood clot/thrombosis

JCVI statement on use of the AstraZeneca COVID-19 vaccine: 7 April 2021:

'To date, there are no reports of the extremely rare thrombosis/thrombocytopenia events following receipt of the second dose of the AstraZeneca COVID-19 vaccine.

All those who have received a first dose of the AstraZeneca COVID-19 vaccine should continue to be offered a second dose of AstraZeneca COVID-19 vaccine, irrespective of age.

The second dose will be important for longer lasting protection against COVID-19.'

Read more via the link below:

https://www.gov.uk/government/publications/use-of-the-astrazeneca-covid-19-vaccine-jcvi-statement/jcvi-statement-on-use-of-the-astrazeneca-covid-19-vaccine-7-april-2021

British Society of Haematology expert guidance to clinicians

The BSH – British Society of Haematology is also providing expert guidance to clinicians, and an opportunity to advise them further in MDT’s (multi-disciplinary meetings), if necessary.

Read more via the link below:

https://b-s-h.org.uk/about-us/news/guidance-produced-by-the-expert-haematology-panel-ehp-focussed-on-vaccine-induced-thrombosis-and-thrombocytopenia-vitt/

All 3 organisations will issue further updates and advice, as new data comes through. We will be sharing news on our website and on the weekly e-Newsletter, as always.

Good News for Cancer Patients: ‘Covid-Friendly’ Cancer Care At Home Extended

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Thousands of people with cancer can benefit from ‘Covid friendly’ treatments from home

Thousands of people with cancer can benefit from ‘Covid friendly’ treatments from home, the NHS announced today.

More than 30 different drugs are available to treat patients, offering benefits such as fewer hospital visits or a reduced impact on their immune system.

MDS Patient Support

If you have a worrying symptom, please do come forward and get checked

Around 8,000 people have already benefitted from the treatment ‘swaps’ since April helping to maintain cancer treatment in the face of coronavirus with more than 250,000 people starting treatment for cancer since the start of the pandemic.

The NHS is funding effective and less risky treatment ‘swaps’ for patients during the pandemic, and patient access to these drugs will now be extended until the summer, with the potential to extend until the end of March next year.

Targeted hormone therapies such as enzalutamide for prostate cancer and broadened use of lenalidomide in the treatment of myeloma – bone marrow cancer – are among the options available for clinicians to choose from.

For ovarian cancer, some patients can receive trametinib as a tablet alternative to chemotherapy and so reduce the impact on their immune systems.

A string of NHS innovations to help patients to access treatment safely throughput the pandemic

The NHS Long Term Plan committed to using cutting edge treatment and technology to save and improve patients’ lives

The Covid-friendly cancer treatments are among a string of NHS innovations that have helped patients to access treatment safely throughput the pandemic.

The NHS also made up to 10,000 chemo deliveries to patients’ doorsteps during the first wave of the virus, introduced Covid-secure surgery hubs and fast tracked stereotactic ablative radiotherapy (SABR) which requires five doses rather than up to 30 with standard radiotherapy, cutting the number of hospital visits that potentially vulnerable cancer patients need to make.

NHS England has also introduced new ways of testing patients for cancer including by piloting mini cameras that patients can swallow to test for bowel cancer.

MDS Patient Support

Professor Peter Johnson, NHS clinical director for cancer

“Cancer has been a priority throughout the pandemic which is why NHS staff have fast-tracked patient access to more convenient and kinder treatments to provide as many people as possible with safe and effective care, even as the NHS cared for more than 380 000 people seriously ill with Covid.

“Extending the use of ‘Covid friendly’ treatments for cancer is another example of how we are embracing the full range of treatment options and bringing the NHS to patients at home in many cases.

“If you have a worrying symptom, please do come forward and get checked – the NHS is ready and here to treat you. Cancer is easier to treat when it’s caught at an earlier stage and coming forward for a check could save your life.”

Recent analysis showed that when NHS England introduced the new cancer therapies, it boosted the number of people having cancer treatments during the pandemic, when treatment might otherwise have been delayed or not safe to give at all.

Treatment options also include:

  • Venetoclax in acute myeloid leukaemia as an oral alternative to more toxic standard chemotherapy
  • Nivolumab or pembrolizumab for patients with bowel cancer whose cancers have a specific genetic fingerprint
  • Ixazomib in myeloma as an oral alternative to treatment which would require more hospital visits and injections
  • Atezolizumab as first-line immunotherapy for bladder cancer instead of chemotherapy.

The NHS put in place a £160m initiative last year so that people with cancer could benefit from alternative, more covid friendly treatments.

How are Electronic Patient Notes Accessed in Clinical Trials?

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MDS Patient Support

The Medicines and Healthcare products Regulatory Agency (MHRA), the agency responsible for ensuring that medicines work and are safe, is organising a online meeting on Wednesday 31 March from 10:00 – 11:30am to ask patients and patients representatives about a new guidance for accessing electronic patient notes in clinical trials.

Have your say on a guidance on electronic patient notes

They have said to us:

This is a follow up meeting from the one that took place on 5th February to discuss initial views on this topic. Following on from the comments we had at this meeting and subsequent discussion with other stakeholders (including the NHS clinical research community, the Health Research Authority, pharmaceutical companies and those who sell medical records software) the first draft of the guidance has now been developed.

This guidance will also cover topics such as consent, confidentiality, and security and we will be asking for your views at the next meeting. 

We would like to gather a wide range of views from patient representatives and patients on this first draft of guidance. We welcome your attendance even if you were unable to attend the first meeting as there will be a summary of the points previously made.

We are currently finalising some slides which we will present at the meeting. These will be provided to you prior to the meeting. We hope to then discuss your opinions on the draft guidance and whether you feel there are other areas that should be considered.

If you would like to attend the meeting please email engagement@mhra.gov.uk by Friday 26th March. We will then provide you with the slides, agenda and joining instructions. 

Have you been vaccinated? If you experience any side-effects, you can log them officially

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Now that most people in the Clinically Extremely Vulnerable Group have been vaccinated, it's vital that we report any side effects from the vaccines.

This is even more important for MDS patients. Immunocompromised people were not included in the clinical trials of the vaccines, so there is a possibility that some MDS patients may respond in a different way to the healthy people that took part in the trials.

Your reporting as patients or caregivers can help safeguard everybody who is given the vaccines so, if you are not feeling quite right following your vaccine,  please report it, even if you are not sure whether it is a side-effect of the vaccine.

Reporting side effects can be done easily through the Yellow Card Scheme which is managed by the MHRA (Medicines & Healthcare products Regulatory Agency). Please do this - even if you think your doctor may have reported on your behalf.

The MHRA advise “If in doubt, report!” You can report using any of these methods:

  • Logging on to the Yellow Card Scheme website Official MHRA side effect and adverse incident reporting site for coronavirus treatments and vaccines https://coronavirus-yellowcard.mhra.gov.uk
  • Telephoning the MHRA on Freephone 0800 731 6789 (9am to 5pm Monday to Friday).
  • Writing to the MHRA at 10 South Colonnade, Canary Wharf, London E14 4PU
  • Downloading the Yellow Card App on your smart phone from Yellow Card - NHS https://www.nhs.uk/apps-library/yellow-card/
MDS Patient Support

The recommendations have not changed:

  1. Have the vaccine (whichever is offered to you) if recommended by your GP or MDS team to have it.
  2. Keep shielding and isolating – even if you have had both your vaccine jabs.

Stay safe, stay in touch with us and hope to see many of you on our video calls.

A summary of Yellow Card reporting is made public, and appears every week on their website, under Latest News: https://coronavirus-yellowcard.mhra.gov.uk/news

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