Manuela Rotstein, Author At MDS UK Patient Support Group

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A Festive Message from MDS UK

Posted on 18/12/2019 at 2:59 pm.

To all those awaiting results; those newly diagnosed; those undergoing treatment; all those with loved ones who have MDS; all those recently - or not so recently - bereaved; to those in remission, and to those given the coveted all-clear.

We wanted to let you know that we will be thinking of you this festive season, and we send you our commitment and love.

And to all those who are contributing to MDS UK Patient Group, a big big Thank You. You are essential and amazing.

Take extra good care of yourselves.

MDS UK team and Committee Members

PS: Sharing a photo we took in Twickenham, with our fantastic patron Caitlin Limmer, Chairman Ted Peel, fundraiser extraordinaire Moni and her husband (who run the delicious Hei Hing restaurant), CEO Sophie Wintrich, and Kent group coordinator Andy Veitch (left to right)

Researchers at Queen’s University Belfast receive the 1st scientific research grant awarded by MDS UK

Posted on 25/11/2019 at 9:12 am.

Written by Manuela Rotstein

Queen’s University Belfast was awarded the first scientific research grant from MDS UK to improve treatment for Myelodysplastic Syndromes (MDS), a type of bone marrow cancer.

Myelodysplastic Syndromes (MDS) are a form of bone marrow cancer whereby the bone marrow gradually fails to produce mature healthy cells. In some patients, MDS can progress to Acute Myeloid Leukaemia (AML), whereby the abnormal cells grow very rapidly, building up in the bone marrow and blood.

The grant has been awarded to Professor Ken Mills, Dr Kienan Savage and Dr Katrina Lappin, a leading cancer research team from the Centre for Cancer Research and Cell Biology at Queen’s University Belfast. It will build on recent discoveries by Queen’s researchers that cancerous cells from a large proportion of patients with MDS, particularly those that progress to AML, have a DNA repair defect.

The researchers have identified the most common genetic mutations that drive this DNA repair defect, revealing a significant number of mutations that control how DNA is structured and the way that genes are “stitched” together to form the final blueprint for making a protein (a process known as RNA splicing).

Professor Ken Mills explains:

“To date our research has examined the molecular consequences of mutations in RNA splicing and DNA structure genes, both of which can have an impact on the way that DNA is repaired. A DNA repair deficiency can be manipulated to enhance existing or novel therapies to improve outcomes in elderly patients.”

The new research grant will further explore the role of deficiencies in DNA as a therapeutic target, particularly during disease progression.

Professor Mills added:

“We are delighted to be the recipients of MDS UK’s first scientific research grant that will enable us to further investigate the impact of DNA repair in MDS particularly on disease progression from MDS to AML.

“Through this research, we will be able to identify the best treatment plans for patients, which could result in reduced disease progression and improved patient outcomes.”

CEO of MDS UK Sophie Wintrich explained:

“To date, alongside crucial advocacy work, enabling access to treatment, MDS UK has provided close to 2800 MDS patients, carers and families with essential quality of life support, information and advice, via our helpline, patient meetings, newsletters, booklets and our website. It is particularly exciting for our organisation now to be able to add a research project to our core services.”

Kes Grant from MDS UK added:

“As a committee member of MDS UK, as well as a patient diagnosed with MDS 20 years ago, I am really excited about this venture into research. We tend to think about research in terms of data. What we are really talking about is resetting the DNA of people and these people are partners and parents, aunties and grandparents, workers and friends. Imagine how many people could benefit from a breakthrough like this.”

MDS UK Chair, Ted Peel explains:

"Patients suffering from MDS know the broad and bewildering variation of MDS sub types. Current available treatment is supportive, but not curative. These wide variations make research difficult. When added to the relative rarity of this blood cancer, which in itself can limit potential research, the process of identifying exact causation and possible cures are rendered particularly difficult. Thus, despite ongoing research across the world, we at MDS UK have decided that in the interest of MDS patients, and future patients, we should use our limited funds to enter the world of clinical research.
After following a thorough process to identify a possible research project, MDS UK are delighted to have awarded a grant for a four year Ph.D project to Professor Ken Mills and his team at Queens University Belfast. The nature of the research is explained in the press release from the Queen’s University Press Office and is one which could have a wide application if it were to prove successful. We wish Professor Mill’s team and, of course, the Ph.D student selected, every success in their endeavours and look forward to working with them.
We hope that this will be the first of our funded clinical research projects, but this will depend very much on having the continuing resources to fund such undertakings. We thank all those who have so generously supported us in the past and enabled MDS UK to take this bold step. We look forward to keeping you updated and hope for your continuing support to help to finance the current and possible future initiatives."

The £173,000 research grant to fund a 4-year PhD studentship has been made possible thanks to legacies and donations from patients and families affected by MDS.

Eden organised a fun Cèilidh Fundraising Event in aid of MDS UK

Posted on 30/10/2019 at 2:27 pm.

Written by Manuela Rotstein

MDS UK Patients’ Poems on MDS World Awareness Day

Posted on 16/10/2019 at 3:14 pm.

Written by Manuela Rotstein

by Kes Grant

Myelo Dysplastic Syndrome the thief that stole my life
Myelo dysplastic syndrome my nemesis and daily strife.
The gift that keeps on giving from sepsis, fatigue and blood
To platelets, GCSF and transplants
I sometimes wonder how I’m stood
I long for a cure one day

Myelo dysplastic syndrome you have my body but not my spirit
I will strive, and wriggle and struggle,
my mind strong as I go through it
My family suffer as do my friends and that I really hate
Seeing the pain and worry on their faces as they wait to hear my fate
I long for a cure one day

by Shareen Vouvray

I waited at the station with my little case on wheels,
I worried about lifting it because of the heaviness it feels,
Then the thought of you waiting patiently at another end,
I knew that I could do it and not disappoint a friend.

I waited at the airport with my iphone in my hand,
Not to take a photo because I wasn’t feeling grand,
My little case on wheels sat beside my chair,
My heart felt torn in two and I felt some despair,

Soaring through the sky I felt at peace with life,
Down below the toy town cars glinted in the strife,
Magic fairy lights all twinkled on the map of France,
As the airline staff started their aisle feeding dance.

I leave behind a piece of me each time I hug goodbye,
To my son, my two daughters, my grandchildren, how I cry,
One in London, one in Spain, one resides quite near,
But parting isn’t easy from the ones you hold so dear.

I waited on the ward for my treatment that is free,
With gratitude I wonder how they donated it for me,
We always take for granted all the things around us,
Until one day a wakeup calls us to a different bus.

Now each day is precious even though I am so tired,
I want to be an astronaut that never is retired,
I want to take my little case and visit every place,
It gives me hope to help me cope with a smile upon my face.

Chemotherapy at home: less visits to the hospital and better quality of life

Posted on 19/09/2019 at 3:36 pm.

Written by Manuela Rotstein

Written by Janet Hayden - Lead Myeloid Clinical Nurse Specialist - King’s College Hospital

MDS specialist nurse Janet Hayden gave two talks at our recent London Patient meeting at King’s College Hospital.

The first one was a report about the MDS International Symposium in Copenhagen, which she attended thanks to a travel grant from MDS UK. The symposium included a 1 day nurse programme, attended by nurses from several countries.

Janet says:

It is important that those of us lucky enough to attend these events get the opportunity to share that learning and knowledge back at base camp and especially to the MDS patient community who may not readily have access to some of this knowledge via other forums . So I have attempted to summarise some of these main points which may be of interest to you.

Janet says:

The program this year was heavily scientific. The presentations showed the ever increasing complexity of both evolution of MDS and the diagnosis. it is clear that the science has moved on tremendously in the past decade. The list of somatic mutations acquired in MDS is ever growing and the understanding of which of these genes does not respond or does respond continues to evolve. Challenges remain due to the heterogeneity (patients having more than one acquired mutation) that presents major challenges for treatment strategies.

A large team from Denmark presented their news and developments for patient services. These services included a Chemotherapy at Home, or mobile chemotherapy option, enabling patients to lead as normal a life as possible, whilst receiving their treatment. It also covered a patient peer to peer support scheme, as well as an exercise regime to help boost energy for AML and MDS patients.

Chemotherapy at Home scheme at King’s College Hospital

Her second talk introduced the Chemotherapy at Home scheme that will soon be in place at King’s College Hospital.

Click here or on the image to read and download Janet Hayden's presentation.

The Benefits for Patients

From the patient point of view there are a number of patients who struggle with travelling and travel costs. They experience long waiting times, increasing time off work for the patient and their carer.

In addition, the fact that they do not need to stay at the hospital environment while receiving treatment reduces their risk of infection so patients may choose chemotherapy at home to avoid the regular trips to the hospital.

The Benefits for the NHS

Moving care out of a hospital setting, is an important goal for the Institute’s and the broader NHS. There is evidence that it improves patient experience and quality of life, while reducing NHS burden and costs. As it releases capacity from busy outpatient clinics the scheme will help to improve NHS ability to deliver effective care.

The scheme has proven to be the preferred option by patients in Birmingham and other areas. Both King's College Hospital NHS and Guy's and St Thomas' NHS Foundation Trust staff are very supportive of the initiative, citing the positive impact it could have on patients.

Chemo at Home could be financially sustainable, and cheaper for the Institute than traditional clinics.

ACE-536-MDS-002 (Luspatercept) – Clinical Trial Open to Recruitment

Posted on 16/09/2019 at 8:08 am.

Written by Manuela Rotstein

SUB-TYPE OF MDS:Lower Risk MDS patients who require red cell transfusions but have not received Erythropoietin
SEVERITY OF MDS: IPSS-R Very Low, Low or Intermediate Risk MDS
NAME OF DRUG: Luspatercept
Aims and benefits: To compare the safety and efficacy of Luspatercept versus epoetin alfa for treating anaemia in patients who require red cell transfusions.
Luspatercept promotes red blood cell formation by regulating the growth of red blood cells during the late-stage of their development. It works differently to erythropoietin.
This is a Phase 3 Randomized Study between Luspatercept and Epoetin alfa.

FG-4592-082 (Roxadustat) Clinical Trial Open to Recruitment

Posted on 16/09/2019 at 7:53 am.

Written by Manuela Rotstein

SUB-TYPE OF MDS:Lower Risk MDS With Low Red Blood Cell Transfusion Burden
SEVERITY OF MDS: IPSS-R classification very low, low or intermediate risk with <5% blasts
NAME OF DRUG: Roxadustat
Aims and benefits: To determine whether Roxadustat is safe and effective in treating anaemia in patients with Primary Lower Risk Myelodysplastic Syndrome and Low Red Blood Cell Transfusion Burden.
Roxadustat is an oral preparation that stimulates erythropoiesis (production of red cells) by increasing the body’s production of the hormone erythropoietin and it regulates the way in which the body uses iron. This study is a Phase 3 Randomized Double-Blind Placebo-Controlled Study in which there is a treatment period of 52 weeks and a 4 week end of treatment assessment.

Spotted in London this morning: a mysterious figure raising awareness of MDS & blood cancer

Posted on 09/09/2019 at 12:28 pm.

Written by Manuela Rotstein

September: Blood Cancer Awareness Month

Posted on 02/09/2019 at 10:28 am.

Written by Manuela Rotstein

September is #BloodCancerAwarenessMonth.

MDS UK Patient Support Group, together with colleagues from Anthony Nolan, Bloodwise, CLL Support Association, CML Support, Leukaemia Care, Lymphoma Action, Myeloma UK, and Waldenstrom's Macroglobulinemia (WMUK), joined Make Blood Cancer Visible, an awareness campaign sponsored by Janssen UK.

This year, the theme is “Connecting the dots”, aimed at encouraging people to identify the many symptoms that can be experienced by people with blood cancer.

Additionally, throughout the month, MDS UK will posting poems on the theme of blood cancer written by our talented MDS UK member, KateD and other MDS patients, starting with her M.D.S. poem we published in our June Newsletter.

Blood cancer is the third biggest cancer killer in the UK, claiming the lives of more than 15,000 people each year – more than breast cancer or prostate cancer. We believe that making blood cancer more visible will help people identify symptoms earlier, strengthen the community of people affected by blood cancer and help us to fund lifesaving research.

Help us raise awareness with the general public this September by sharing Kate's MDS Poems, or sending your own, and spreading the facts on this "Connecting the dots" infographic.

My Day Starts.
I Must Do Something,
but then remember;
I can’t always do what I used to.
It Mostly Doesn’t Show
to those who don’t know.

Most Days Show how life used to be
before my Many Daily Struggles began
and Mild Depression Set in.
My Dog Sits on my shoulder.
But it Mostly Doesn’t Show
to those who don’t know.

Most Doctors Strive to do
what is best for the patient;
Many Don’t Spot the tell - tale signs,
are confused and perfunctory because
there are Multiple Different Symptoms
that confuse and delay.

My Marrow’s Diagnosis’ State is not
a good one; in fact,
My Diagnosis Stinks, but
it Mostly Doesn’t Show
to those who don’t know.

Medicinal Drugs Start.
I May Die Slowly or stay like this
for years yet as it
Mostly Doesn’t Show
to those who don’t know.

There are More Daily Struggles
for people like me
who have this fatigue,
these aching joints and bones,
this marrow that doesn’t work,
these days of despair.

Many Don’t Survive.
But I am not the worst and
for those in the know,
it Mostly Does Show
bravery, honesty, resilience.

Many Days Sort themselves out
in hospital waiting rooms on
hard plastic chairs,

Most Doctors Smile and ask how I am,
and continue to Make Some Diagnosis
if they know and can show
me that My Daily Struggle,
my MDS is Myelodysplastic Syndrome.

Familial/inherited MDS: rare but important to keep in mind

Posted on 21/08/2019 at 1:21 pm.

Written by Manuela Rotstein

Written by Prof Jude Fitzgibbon, Prof Tom Vulliamy and Prof Inderjeet Dokal, Queen Mary University of London

When a patient is first diagnosed with myelodysplastic syndrome (MDS), one of the most frequent questions posed is whether the disease is likely to be passed down from parent to child, and if other family members could conceivably develop this malignancy too.

Conventionally, heritable (i.e. passed from parent to child) forms of MDS are thought to be rare and are typically, NOT considered to run in families.

Our research group at Queen Mary University of London (QMUL), with funding from the charity Bloodwise, have been collecting and storing blood and bone marrow samples from these rare patients and their families in order to better understand the nature of the faulty genes responsible for inherited MDS. This research is important for the individual families, as it provides valuable
information for treatment of the disease, assessing risk and genetic counselling, but it also offers a unique opportunity to identify the critical early genetic events that give rise or predispose patients to MDS.

Since 2016, inherited forms of myeloid malignancies, including MDS, have been included as a separate disease entity in the World Health Organisation (WHO) classification of haematological cancers.

This is leading to a greater awareness on behalf of haematologists regarding the existence of these forms of disease, enabling more tailored management of this group of at-risk individuals.

This is important, as patients with ‘familial MDS’ (i.e. with a predisposing mutation present in every cell) tend to develop symptoms at a much younger age compared to people with ‘sporadic disease’ (i.e. mutations are restricted to the MDS only).

We also appreciate that MDS can arise as part of a wider syndrome, with many patients/families initially exhibiting bone marrow failure syndromes such as Fanconi anemia, dyskeratosis congenita, and Shwachman–Diamond syndrome which often subsequently lead to MDS.

Why is it important to identify patients with familial MDS?

Our research is demonstrating that there isn’t a singly mutated gene responsible for familial MDS but many different genes,
some of which are also mutated in sporadic forms of the disease (RUNX1, GATA2). In comparison other mutations (in the germline) appear enriched or exclusive to inherited forms of MDS (DDX41, SAMD9) and this is offering researchers novel insights into the causes of MDS and the prospect of developing better treatments for all MDS patients.

It is, therefore, important that, when a new patient is diagnosed with MDS in the clinic, steps are taken to determine whether the disease has a significant genetic-inherited component. This is crucial, as in some subtypes of inherited/familial MDS subsequent therapy must be modified.

For example, if a patient has MDS associated with an underlying telomerase mutation then the chemotherapy conditioning regimen performed prior to a bone marrow transplant has to be reduced.
Equally, a haematologist would want to ensure that, in selecting bone marrow/stem cell donors, an asymptomatic family member with the same genetic defect is not used as the donor as the recipient could go on to develop MDS again at a later time point./li>

In order to facilitate identification and genetic categorization of inherited/familial MDS our research group (in collaboration with the Genetics Laboratory at Birmingham and support from Bloodwise) provides genetic testing in such cases. This means if a clinician suspects that their patient may have a significant genetic component they can send blood samples directly to our laboratory.

Indeed, in the future, our expectation is that every MDS patient will have a molecular profile performed as part of their overall management, to identify the specific mutations that are exclusive to their MDS and to assess if there is a significant inherited component, linked to their disease, where a mutation is present in all cells in the patient’s body.

We are also able to provide specific advice on the management of patients if a genetic defect is found in one of the many genes that are associated with inherited/familial MDS by contacting us directly (email i.dokal@qmul.ac.uk).

Furthermore, if a genetic defect is not found in one of the known familial MDS genes and there is a strong clinical suspicion for familial MDS (for example, if there is a history of multiple MDS cases in the family) then these samples are put forward for research studies aimed at new gene discovery.

In summary:

Familial/inherited MDS is a very heterogeneous and complicated disorder. It is thought to be rare but the precise figures on its incidence and prevalence are not known.
Over the last 20 years many genes have been identified that are responsible for familial/inherited predisposition to MDS and they have highlighted the importance of making specific modifications to therapy to achieve optimal outcomes.
Our ongoing research programme at QMUL provides genetic testing for all of these genes as well as a strong focus on identifying new disease genes where current genetic tests fail to identify a defect in at-risk families.

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Professor Ken Mills, Dr Kienan Savage and Dr Katrina Lappin

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We are grateful to Eden and her friends for organising this event which helped not only to raise funds but also to raise awareness of MDS with the general public.

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The 25th of October is MDS World Awareness Day

I long for a cure one day

My Day Starts

I’m alive, alive, alive.

7.35 to Waterloo

Friendship

Heart and Soul

Heavy Luggage

Watch and Wait

Invisible

How are you?

Today

Have you?

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Chemotherapy at Home scheme at King’s College Hospital

The Benefits for Patients

The Benefits for the NHS

Chemotherapy at home in Spain

Would like to speak to KCH MDS nurses Janet Hayden or Geke Ong?

Learn more

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ACE-536-MDS-002 (Luspatercept)

FG-4592-082 (Roxadustat)

Mystery figure spotted next to a surprised Londoner on the train

Passersby Amused!

Have you seen the red mystery figure?

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Make Blood Cancer Visible 2019

M.D.S. A Poem by Kate D.

Make Blood Cancer Visible 2019 Infographic: Connecting the dots

Watch Laurence Llewelyn-Bowen's story for #MakeBloodCancerVisible

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Is MDS likely to be passed down from parent to child?

Jude Fitzgibbon talks with Sophie Wintrich about familial MDS. Watch the video

Why is it important to identify patients with familial MDS?

Germline vs Somatic (Sporadic) Mutation

Which services does the research group provide?

Learn more

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