Inspiring Patients - Lions International Blood Research Appeal

Inspiring Patients

George’s Testimony

George and his wife Mary, from Gravesend in Kent, were thousands of miles apart when they first discovered that he was suffering with AML. Their story takes us from Kerala in India and back to the UK where the world-renowned haematology team at King’s arranged a lifesaving stem cell transplant. Here George, aged 56, shares his incredible story:

I first realised that I was unwell during a stay in Kerala with my parents when I suddenly blacked out in May 2020 and was taken to hospital where tests revealed my blood count was low. I checked with my family doctor in a speciality hospital in Cochin where further tests confirmed a variation in blood count. The doctor referred me to the Amritha Institute of Medical Sciences where blood and bone marrow tests were conducted and I was diagnosed with Acute Myeloid Leukaemia (AML).

There were no signs or symptoms at all other than that one black out and I was healthy and active. Being diagnosed in India was tough as my wife and daughters were all in the UK. Covid-19 was spreading through India and due to lockdown I was unable to return in March 2020 as planned. It was difficult to share the details with family initially, but my faith kept me strong. My family gave me encouragement, support, and confidence to face the challenge while in India until I landed back in the UK with a smile and positivity.

I was offered treatment in India, but I decided to only have some initial transfusions in the hope I would be able to return to the UK for chemotherapy and more extensive treatments. My wife Mary and our friends were amazing, and they managed to make arrangements for me to travel back to the UK in June. Darenth Valley hospital in Kent admitted me on arrival. Later that month they began treating me with chemo for AML and it wasn’t until November that I was referred to King’s for a bone marrow transplant.

In the mist of Covid-19, my brothers were not able to do the tests sent out for the donor match from Kerala, as all centres were closed. Even though they would have been a match, travel was impossible during lockdown. However, a miracle occurred and a donor was identified with a 9/10 match in the UK and we are so grateful to him/her for their kindness. The stem cell transplant in December 2020 has given me new life to move forward with day-to-day actives.

There are many challenges and I am slow and tired compared to how I used to be and I am currently unable to work, but I am positive and undergoing physio at King’s. Each day is a great blessing for me, and to have Mary, our daughters, friends and family close is priceless. We hold on to this saying ‘and call upon ME in the day of trouble. I WILL deliver you, and you shall glorify ME.’

The level of personal care provided by King’s for my family and I has been amazing. Our special thanks to Dr Victoria Potter who always took time to listen patiently, investigate, advise, and clear doubts and concerns ahead of my bone marrow transplant. I would also like to thank the haematology team and all of the staff who are involved in my care.

I do feel we need to arrange awareness of blood disorders. For instance, in my case there were no symptoms at all. I feel people try to find details online when hearing the word leukaemia or AML and end up with more fear which in turn makes them lose hope. That is why it is essential to gain expert advice from health care professionals and through charities like LIBRA who are helping to make a positive difference.

 

Matthew Mortimer

King’s patient Matthew Mortimer from Benenden in Kent receives ongoing treatment for T Cell Lymphoma after a diagnosis in 2015. Now at 55 years of age Matthew is leading an active life thanks to the treatments available.

Matthew was successfully treated for Hodgkins disease in 1987 with a course of radiotherapy so he kept a close eye on his overall health and wellbeing. In early 2015 he visited a GP as he had noticed some enlarged lymph glands.

He was told not to worry as enlarged lymph nodes were not an unusual symptom to have over the winter months. By March his glands had still not settled, and he was referred to a haematologist locally to him and he underwent a needle biopsy which came back negative.

Despite some reassurance Matthew was still concerned as he felt that something was not right, and he was eventually diagnosed with T Cell Lymphoma after a full biopsy in August. Matthew made his first trip of many to King’s in late 2015 and he was taken into the care of the world-renowned haematology team. Initially he underwent some conventional treatments including chemotherapy which was effective for a short time. He went on to receive an allogeneic stem cell transplant in September 2016.

I believe the transplant has made the most difference to me throughout my treatment. My sister Eve was the donor match and I would like to thank her. During our time at King’s we found out about LIBRA and my whole family have been inspired to support the charity. I would like to thank my family for helping to raise funds for LIBRA through bake sales and further activities so new and improved treatments can go on to be created to help patients like me.

Following the transplant Matthew’s disease continued to progress which was anticipated and he was referred by King’s for radiotherapy at Guy’s and St Thomas’ Hospital. The disease was stable throughout 2017, enabling him to enjoy a more active lifestyle. In the meantime, King’s were looking for a suitable drug trial for Matthew and an opportunity came up late 2017. Matthew went on to take part in two trials which took place at University College London Hospitals. The second trial ended in the summer of 2018 and since then Matthew’s disease has been continuing to progress, so the team at King’s have provided a palliative care plan to include more radiotherapy which provides relief for symptoms. Specialists are also putting Matthew forward for further treatment trials in the hope that they can once again stabilise the disease.

Matthew looks back on his experience and said:

I have always found the transplant and haematology teams at King’s very dedicated and focused. The consultants are on hand to provide support and they do such a great job in a very busy environment. I have stayed on the ELF and LIBRA Ward twice and last year I visited the new LIBRA funded Ambulatory Transplant Unit where I received donor lymphocytes following my transplant. It’s a lovely quiet space and makes all the difference when having outpatient treatment.

Looking to the future he added:

My journey is about fighting on and I won’t give up. The consultants support me and will continue to put me forward for new clinical trials. Living with such an aggressive illness is tough, but I am still enjoying the simple things in life such as cycling and will continue to do so. It is due to the treatments available that I am able to carry on as I am.

David Smallwood – Stem Cell Transplant

David Smallwood survived a very rare and aggressive form of Lymphoma thanks to the treatments available at King’s. The 67-year- old from Bromley was diagnosed with Mantle Cell Lymphoma in December 2006. Staff at the Princess Royal University Hospital (PRU) in Farnborough made the diagnoses and David began having chemotherapy there in January 2007.

Despite six cycles of chemotherapy David was told he may live for just three more years. Consultants at the PRU, in conjunction with those at King’s, decided to try another treatment program. They planned to arrange a reduced-intensity stem cell transplant if a suitable donor could be found.

Luckily for me my older brother Jim was a match. He travelled over from Belfast and donated his stem cells at King’s. The nurses at the unit were fantastic with Jim. He normally avoids hospitals and on this occasion he was even more nervous having been told that they would have trouble finding suitable veins.

As it turned out, the anticipated seven hour ordeal ended up as a mere three-hour painless procedure. It wasn’t that much different from donating blood or receiving a blood transfusion. I went on to have my stem cell transplant on 28th February 2008, followed by five weeks in isolation.

The care and treatment I received from the staff at King’s, including the consultants, nurses and physiotherapists was professional and exemplary. The aftercare left nothing to chance and I was regularly monitored at both the PRU and King’s. Now almost six years later I have been discharged from King’s Lymphoma Clinic and it feels amazing.

Daisy Turner – Cord Blood Transplant

Daisy is only 22 but has been through a huge amount in her life. As a teenager, she was diagnosed with myelodysplasia (MDS) with refractory anaemia, a condition which affects the body’s ability to produce red and white blood cells. In 2009, Daisy had a successful cord blood transplant at King’s. Blood, which is rich in stem cells, is taken from the umbilical cords of newborn babies and frozen.

When a blood match is found, as happened in Daisy’s case, stored cells are transplanted into the recipient through a drip. Although Daisy’s transplant at King’s took only eight minutes, it followed a week of intense chemotherapy to destroy her existing bone marrow.

The hospital quickly became my safe house, but it was easy to feel as though I had lost complete control. So every morning, I woke up, showered and put on my makeup. This was my way of holding on to my dignity.

I’ll always be grateful to the donor as well as Professor Ghulam Mufti and the team at King’s. I feel so privileged to have had such a revolutionary new treatment.

I find it amazing to think where I am now, given what I’ve been through. The support I’ve had from my family and friends is incredible, and humbling. I am really excited about the future, and relieved that I can start to plan for what happens next in my life.

Rizwana Rashid – Bone Marrow Transplant

King’s has consolidated its bone marrow transplant services from Guy’s & St Thomas’ with the existing services at King’s on the one site at Denmark Hill. This makes the service the largest of its kind in the UK with specialists now performing more than 200 transplants each year.

Rizwana benefited from their expertise after visiting King’s due to routine blood tests confirming that she had a form of leukaemia. As she had lost her sister to a similar condition, she was convinced that she herself would die within a few years, and by the time Rizwana arrived at the hospital, she was very unwell.

After a thorough review of her condition, including blood tests, bone marrow biopsies and x-rays, Professor Ghulam Mufti, Head of Haematology, and his specialist blood cancer team decided the best treatment would be a bone marrow transplant. Nine months later, a match was found through the Anthony Nolan charity and Rizwana came in to have her transplant.

I had little energy. It seemed that my mouth was constantly sore due to painful ulcers and my skin had developed open and sore wounds. I hope that more and more patients have my experience as opposed to my sister’s. I found the level of knowledge and understanding at King’s to be in a league of its own. The care and genuine compassion all staff have shown is unique and Professor Mufti never gave up on finding a long-term solution for me.

Harriet Usher – Acute Lymphoblastic Leukaemia

Mother of three, Harriet Usher was diagnosed with Acute Lymphoblastic Leukaemia (ALL) in October 2010. As she struggled to breathe, specialists at her local hospital suspected she was suffering with pneumonia but they soon realised it was not the case.

They carried out a bone marrow aspiration and swiftly transferred Harriet to King’s College Hospital. King’s diagnosed ALL which was a huge shock to Harriet and her family. A team of medical experts drained 2.5 litres of fluid from each of her lungs and a litre of fluid from around her heart. From then on she had chemotherapy nearly every day for just over 2 years.

The haematology team were amazing and so supportive throughout my treatment. I stayed in hospital for the first 8 week phase of my treatment plan but I was allowed home during the second phase of treatment. It was very intense as I had to travel to King’s every day for chemotherapy but my family kept me going.

We didn’t know whether the treatment would be successful but it saved my life. After my treatment finished I decided to raise funds for LIBRA as the charity is so close to my heart. The haematology team saved my life and by supporting LIBRA I can help others like me.

Trevor Jones – Chemotherapy and Bone Marrow Transplant

For many years Trevor Jones suffered with a rare condition called Hypoplastic MDS (myelodysplastic syndromes), where the bone marrow does not produce sufficient new cells to replenish blood cells. When Trevor’s blood counts were low, he needed transfusions of red blood cells and platelets.

His condition developed into Myeloproliferative Disorder, causing blood cells to grow abnormally in the bone marrow. In May 2012 doctors discovered that Trevor was suffering with Acute Myeloid Leukaemia and he was swiftly admitted to King’s in June 2012.

He endured a six month treatment plan, including four intensive rounds of chemotherapy and a bone marrow transplant. Trevor still visits the hospital for routine blood tests and is making good progress.

We spent a year raising funds for LIBRA, totalling around £20,000, so that King’s can continue to develop new treatments for other patients with leukaemia. We have also helped increase awareness about the need for more bone marrow donors in the UK.

King’s were unable to find a suitable donor for Trevor here but luckily they were able to source a close match in Germany. Without the bone marrow transplant Trevor wouldn’t be here today. It’s so easy for people to join the British Bone Marrow Registry and by doing so they could save a life one day.

Billie

Inspirational King’s patient, Billie, recently donated £3,000 to LIBRA through her own charity ‘Billie’s Fund’. The 30-year-old, from Beckenham, was diagnosed with leukaemia in September 2015 at the Princess Royal University Hospital (PRU) and was quickly transferred for lifesaving treatment at King’s.

I have had five cycles of chemotherapy at King’s, a total body irradiation which took place at Guys, and then I was back at King’s for a stem cell transplant. Due to a weakened immune system, I have also had countless blood and platelet transfusions as well as antibiotics. My progress is now closely monitored through bone marrow biopsies.

I’ve had lots of wonderful doctors, nurses, health care assistants, kitchen staff and cleaners involved in my care. At King’s it’s all the staff that have encouraged me along my way and kept my spirits up.

When I was first admitted to King’s I stayed on ELF and LIBRA. The nursing staff helped me and my family overcome what was a very daunting experience. Following my transplant, I was admitted to the ward for the third time for more than seven months. The environment is positive and there are so many lovely people on ELF and LIBRA that make staying in hospital for such a long time so much easier.

Donate to Billie’s Fund in aid of LIBRA online at www.billiesfund.org/donate/ and select LIBRA as your beneficiary