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Graham Cheyne: “My CMML may give insight into a way forward in treatment”

I sat with a diagnosis of CMML, feeling perfectly well and not knowing what to ask...

On the 27th of August 2019 I attended York District Hospital, Haematology department at the Magnolia Centre for results of a Bone Marrow Sample I had provided following results from routine blood tests which had revealed abnormalities in two of the readings.

After another blood sample was taken prior to my consultation with my consultant I felt a little suspicious of what was to come. This suspicion increased when the consultant entered the room with a nurse who she introduced as a specialist nurse.

My consultant told me in the best way she could that I had a condition which was Chronic Myelomonocytic Leukaemia. I knew straightaway in my own mind that this was probably a life ending form of cancer which was confirmed by being told there was no cure.

Here I was sat with a diagnosis of CMML, but feeling perfectly well, mentally and physically, but not really knowing what questions to ask other than probably the one most people ask, how long left have I. Being told it was a question that couldn’t be answered at this time as further tests were needed to be carried out and it was only chronic.

Graham Cheyne

The website was invaluable to me to increase my knowledge of CMML

Not having a clue what CMML was other than some form of cancer of the blood I couldn’t formulate any questions to ask so the consultation was over in about ten minutes. I left the room with the Specialist nurse giving me a Bloodwise folder with various pamphlets of the hospital services and a leaflet explaining the ins and outs of having CMML.

My next appointment was arranged for the 25th of October 2019, with advice to contact the Specialist Nurse should I need more information or if my health status alters.

I think it was at this point I made a conscious decision the way forward for me was to be positive in dealing with this blip in my life. However, this was not going to take over my life, thinking about it all the time and possible outcomes and when.

Over the next 7 weeks I had plenty of time to investigate CMML and I gained a great deal of insight into what the future may hold for me. Reading people’s experiences on MDS UK Patient Support Group website, of how they have managed their lives gives me optimism going forward.

The website was invaluable to me to increase my knowledge of CMML not only of the condition but what is being done in respect of treatments and patient care and research by the medical profession. Additionally, I learnt I lived within 30 miles of a Centre for Excellence for care of MDS with a specialist in CMML.

On the next appointment I was armed with three questions to ask

The appointment on the 25th of October 2019 arrived despite my naivety on my last visit I was now more knowledgeable of most things with CMML and was only armed with three questions to ask.

After the now routine blood sample given below and analysed, I saw my consultant who this time had another nurse with her, only this one was a research nurse.

I had also brought my wife along as she has been a tower of strength in helping me deal with this setback in my life. The consultation started with how I was feeling which was pretty much the same as the last time we met. I was told my blood result were okay (only the fact they were like the last test), everything was positive, regenerating my optimism.

My three questions were
1. Could I have an additional opinion with Professor Bowen at Leeds?
2. Could I still be an organ donor?
3. Could I have copies of the results of my recent blood tests.
The answers were 1. Yes 2. No, but maybe my corneas 3. Yes

I had no hesitation in agreeing to take part in the European Registry

I was then asked if I would take part in A prospective, multi-centre European Registry for newly diagnosed patients with Myelodysplastic Syndromes (EUMDS). I had no hesitation in agreeing to do this, hoping it may help somebody in the future, in my predicament. I was then left in the care of the research nurse to explain the process after which she gave me a six-page document to read and sign if I was in agreement. We then decided for an appointment the following week.

At the appointment I did two tick box survey forms nothing difficult also gave a blood sample which the nurse explain had to be frozen within an hour and after that they would be despatched to a centre in Switzerland where they stored for the research. We then needed to arrange another appointment in six months’ time which coincided with my next visit to the consultant.

After my details had been entered onto their computer system, I am formally now an ID code – UKYORK + a number. Whilst I am unable to donate my organs it’s good to be able to donate my later life history, hopefully the progress of my CMML may give some insight into a way forward in treatment in the future.

Please do send us your story – whether you are a patient, family member or friend:
Email it to, or call to our main office Tel: 020 7733 7558.

You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well. Thank you in advance!

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Rebecca’s Story: Three Years after her Bone Marrow Transplant

In 2015 I walked into a consultants room expecting some new prescription or the ‘we don't know’ I had been hearing for past seven years. But this appointment was different. That day I would finally get a diagnosis and even though it was shocking and terrifying a sense of relief was there as finally I had answers.

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Adrian, husband of Emma, who was diagnosed with MDS in August 2018

Emma's diagnosis came as a shock

Emma was diagnosed with MDS in August this year, which came as a bit of shock. She has been unwell for a few years, and has been sent to the haematology department annually for 4 years.

We went to the results appointment expecting to be sent home with a flea in our ears again. But it was not to be, the Dr informed us that Emma had MDS, but couldn’t give a fuller explanation due to some further tests waiting to be carried out. She told us that MDS was a journey, and that it would ultimately lead to AML, and then death if she didn’t have a Stem Cell transplant. We left the hospital in a daze and Emma broke down.

Whilst we were outside she said the most British thing I have ever heard: she said that what she needed was a cup of tea.

A Bone Marrow Transplant is the only cure for MDS

If you’re in good health, sign up to be in the register and you could be a lifesaving match for someone with blood cancer. All it takes is a bit of spit or a swab!

A holiday overshadowed by the diagnosis and how we found out about MDS UK Patient Support Group

I was due to fly back to Cyprus where I was working the next morning. I worked at the Royal Air Force. They were understanding and let me have some time off.

The family had planned a holiday to Cyprus, which we duly went on, but it was overshadowed by the diagnosis, and we couldn’t tell the children as we were only half aware of what was happening. Whilst being away, we googled the condition a lot and the information we found was complex and scary.

My Brother in Law, Keith got into researching and found MDS UK, and he made contact with Sophie. She explained to him what it was and Keith then relayed to us. It was a worrying time.

Thanks to MDS UK we had Emma's condition explained by a specialist

On coming back to the UK, we were able to get an appointment through MDS UK and York Hospital to see a specialist in Leeds, Prof Bowen, who was able to give us the results of the cytogenetic tests.

Having Emma’s condition explained by a specialist helped a lot. He gave us the correct information, although not great, it still helped. Emma is on a watch and wait, where she will have her bloods taken every 4 weeks. This is always going to be a worry, but I’m glad that we are now under the care of the specialist team.

MDS UK Patient Support Group

If you or someone you know is affected by MDS, give us a call. We can do a lot to support, from putting you in touch with fellow patients to providing you access to MDS Specialists

Russell Cook: “The diagnosis has given me an enormous focus, it’s made my family much closer”

In 2010 I had the last of three bone marrow transplants to treat my MDS. Quite a few things have happened since then!

Russell Cooks tells about his diagnosis and what happened next

From climbing stairs without a feeling of overwhelming fatigue to going back to work

For me, a major milestone after my diagnosis was simply being able to climb stairs and dress myself without a feeling of overwhelming fatigue. So you can imagine my surprise when, a mere six months after my last transplant, I was able to go back to work - albeit only for a day a week initially. I was also able to take part in a charity walk, itself a milestone since I’d only previously managed to make it to the end of my road!

I had the most amazing support and help from my work colleagues and when I came back they were very keen to make sure that I didn’t overdo it. Imagine my wife’s surprise when, during the first six months back at work, I found myself, presenting to groups of up to 80 people in towns in all corners of the UK - from London, Manchester, Birmingham, Cambridge, Bristol, Edinburgh, Belfast. So, not exactly the idea I had to come back to work gradually….

Russell Cook Running The Cabbage Patch
Russell Cook Running

My stubborn approach to endurance events and how I joined MDS UK Patient Support group

In 2012 I decided that I needed to try and get back to some sort of fitness so I took up jogging and in 2013 managed to run my first marathon - the London Marathon. My wife will always tell you that there was never any doubt in her mind that I would finish it although there were quite a few people at the start of the race, when I was telling my story, who were quite frankly amazed I was there at all! Especially as I’d just been getting over bronchitis and the furthest I’d run in my life was only 7 ½ miles!

This only spurred me on to do more. So in 2014 I ran three marathons, two half marathons, and a 14 mile assault course to raise money for a number of charities of which MDS UK was a major beneficiary. I’ve also run comedy nights and ‘beer and curry’ nights to help raise funds and if anyone wants any help on either of those you can count me in straightaway!

Clearly this brought me to the attention of Sophie Wintrich, the CEO of MDS UK, who felt that my somewhat stubborn approach to endurance events might rub off on the charity! It was a huge honour to be asked to join the charity as a Trustee and I’m as determined as ever that people throughout the UK should have access to the best information, the best support, and for a team of people dedicated to their specific illness. More recently I’ve taken over the role as head of fundraising in between trying to fit this into a successful business and we’ve recently managed to secure places in nationally recognised sporting events.

I have represented MDS UK at the All Party Parliamentary Group on Cancer at the Houses of Parliament and have been involved in a number of campaigns through my efforts on social media where I seem to have developed a note of notoriety!

Russell Cook Running The Cabbage Patch

Russell Cook Running The Cabbage Patch

The diagnosis of cancer with the benefit of hindsight...

In my work life things have most certainly changed for the better. With the benefit of hindsight it’s obvious to me now that for the 10 or 15 years prior to my diagnosis with MDS that my health was suffering and consequently my ability to work. Work was a chore, I was constantly tired, and because of that I found working life to be unsatisfactory and I simply really wanted a way out.

The diagnosis of cancer, as it’s turned out, has actually turned out to be the best thing that happened to me. It’s given me an enormous focus, it’s made my family much closer, it’s given my kids the confidence to go out and do things firmly in the knowledge that they can do absolutely anything. And in my work life it’s transformed everything. So much so, that in 2017 I managed to receive the accolade of top associate partner with my firm of national financial advisers - Foster Denovo.

Nearly 8 years post transplant I find myself more enthused, more energetic, more focused than I’ve been at any point in the previous 30 odd years. More importantly, I am cured of MDS.

My vision for MDS UK Patient Support Group

Going forward, I’d like to see the charity expand its sphere of influence, become a major director of research into MDS but only would also like to see more people involved in the running of the charity. It’s an incredibly small team of people who frankly do the jobs of dozens of people and I would like to be a catalyst to encouraging people to join us.

Please do send us your story – whether you are a patient, family member or friend:
Email it to, or call to our main office Tel: 020 7733 7558.

You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well. Thank you in advance!

You are also invited to join our forum, a lively community of MDS patients sharing their own experiences and questions.

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Bergit Kulhe, MDS patient and advocate, tells us about her experience with iron chelation

Following is an article by our friend and long-term MDS patient advocate from Germany, Bergit Kuhle.
Bergit, together with Anita Waldmann, runs an MDS Patient Group in Germany, and both are founding members of the international MDS Alliance – the umbrella organisation for all national patient groups in the world.

No chance to lay down my burden of iron overload somewhere

Our organism does not have any biochemical or physiological pathway to remove excess iron. Instead the excess iron accumulates mainly in the liver, joints, pancreas, bone marrow and at the worst in the heart, causing organ and tissue damage in the long run. We’re talking about transfusion-related iron overload.

I have been a Myelodysplastic Syndrome (MDS) patient for more than 12 years and I regularly need blood.

The main cause of iron overload is transfusion therapy. Each unit of blood transfused delivers 200–250mg of iron. After only 20 units of transfused blood, 4,000–5,000 mg of iron will have been delivered to the body. At this ironloading, the serum ferritin level rises to about 1,000μg/l. When this level is about to be reached, the doctor suggests iron chelation for transfusion-dependent patients like me.

Bergit Kuhle: MDS Patient on Iron Chelation Therapy

I have been a Myelodysplastic Syndrome (MDS) patient for more than 12 years and I regularly need blood.

Each unit of blood transfused delivers 200–250mg of iron. After only 20 units of transfused blood, 4,000–5,000 mg of iron will have been delivered to the body.

But our organism cannot remove the excess of iron so it accumulates mainly in the liver, joints, pancreas, bone marrow and at the worst in the heart, causing organ and tissue damage in the long run.

My experience with the iron chelator Deferasirox

I have never had a wealth of medical expertise on iron overload. I have accepted the most important fact: excess iron does harm to my vital organs, so chelation is necessary.

Everything went according to plan. I trusted the medication, not giving too much thought to the issue. I have been tolerating the iron chelator, Deferasirox, without significant side effects for 10 years now. I only had an uncomfortable rash in the beginning, which disappeared after two weeks and never ever came back. The ferritin level reliably has descended and always has
stayed below 1,000μg/l.

So, I felt safe from life-threatening organ iron deposition. I was as compliant as can be and always, always took my pills or my suspension even when travelling. I even prepared and swallowed the suspension in an airport’s ladies room. Finally, I have built confidence in my ferritin level, which was fluctuating a little from time to time. But ‘what the heck’, my haematologists have
been content with 400-700 μg/l and I have never been experiencing any discomfort.

I have been lucky with my iron-chelator Deferasirox, being free from side-effects. Whereas in MDS web forums and in my work with patients, I met with various people suffering from all kinds of bearable or unbearable side-effects, mainly such as all stages of gastrointestinal disorders.

A chemical compound binds with the excess of iron in the body to safely pass through the body

Whether you are offered iron chelation treatment or not will depend on the likely benefits versus the likely disadvantages in your
individual case. This will be discussed with you before you make a decision to start iron chelation.

Desferal is a drug to treat the build up of excess iron and is given as a continuous subcutaneous injection under your skin by a pump. There are special teams that can teach you how to administer the drug at home. Exjade is another iron chelator and comes in tablet form, making it easier for patients with poor sight, problems of finger dexterity or a fear of needles. However, in most cases this is only available for patients who cannot manage subcutaneous Desferal or who have serious side effects on Desferal.

Both treatments have certain side effects and often need to be continued for a long period of time to be effective. Your doctor can advise you which drug will be best in your situation.

From our booklet Understanding MDS: Patient Handbook. Click here to download

Devastating news

For me years of chronic transfusion dependence went by and I counted my blessings: more than 530 units of blood in total since 2008, with a stable transfusion interval of 10-18 days since 2010.

My treating professor initiated an invitation for me to a special clinic, where I underwent an MRI in autumn 2017. They scanned my heart, liver, pancreas and my bone marrow. The results were devastating. My view on iron overload broke with the medical report. I still have not fully recovered from what I was told. I would be very lucky, the radiologist said, if my heart was still free of iron. But my liver and my pancreas show a five-fold iron overload, also my bone marrow is full of iron. Another obstacle for
haematopoiesis in addition to my blood disorder.

Where do we go from here? Heading towards diabetes, liver cirrhosis or even hepatic cancer? My heart is iron-free, yes, but the pancreas is strongly loaded. No reason for long-lasting joy as the pancreas takes up similar iron species as the heart, only earlier. Iron overload of the pancreas serves as an early and robust marker of prospective cardiac risk.

It is neither an option for me to increase the dosage of the iron chelator – this could be toxic for my kidneys for instance - nor to reduce the number of transfusions – this would destroy my quality of life and would send me into severe anaemia. I’m stuck.

As so often in the course of my disease there is a diagnosis without any therapeutic consequences. That’s frustrating.

On the medical report I more recently read ‘severe hemosiderosis of the pancreas and the liver’ amongst my other serious health problems. However, my liver values (GPT, GOT) are not yet elevated. Not yet? I am anxious and confused: that’s the patient’s perspective.

Only now I am finding out that for any one patient, the predictive value of ferritin is quite poor. Two patients with identical total body iron burdens can have vastly different serum ferritin levels. Many factors affect the relationship between iron overload and serum ferritin levels. But still the ferritin level generally correlates with both, total body iron stores and clinical outcomes.

Serum ferritin therefore remains the most commonly used metric to monitor iron chelation therapy. Mainly because its measurements are inexpensive in comparison to MRI. However, the biology of circulating ferritin is poorly characterised and hardly comprehensible for non-physicians and non-scientists.

The way iron is regulated by the body relies on a regulated network of systemic and cellular mechanisms for the acquisition, transportation and cellular utilisation of the metal. I very well understand that these metabolisms are completely disturbed in case of strong iron overload.

Chelation Therapy: Good or Bad?

At the end of this article I want to make clear one thing: the outcomes of chelation therapy in Myelodysplastic Syndromes are not bad. There is a positive impact on survival, without doubt. I probably would not be alive any more without Deferasirox.

There are retrospective studies clearly indicating a significant improved survival in patients who received regular iron chelation. Transplant outcomes are also far better after iron chelation therapy. And in case there is a cure, high iron stores can be drained or at least reduced by a most effective phlebotomy therapy.

So yes, there are definitely some solutions for iron overload, if you are in the right cohort. But we urgently need more innovative iron chelation therapies.

Bergit writes a regular column in ‘MDS Europe’, the online home of the MDS-RIGHT project and the future hub for all European MDS information and guidance.

This article appeared first in MDS Patient Support Group Newsletter May 2018

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