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A legacy of research – Beatrice and Harry’s story

by Justine Alford | Analysis

21 September 2016

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Gifts left in wills help fund our life-saving research.

Right now, people are doing amazing things to support our life-saving research. From flipping pancakes to pedalling for victory – every penny donated helps us beat cancer sooner.

But while events and challenges may be the first to spring to mind when you think of fundraising, more subtle acts of generosity also play a huge role in raising money. Like leaving a legacy gift in your Will.

These gifts make up an impressive one-third of our funding, bringing in an amazing £178 million this year alone to help fund vital research.

Each pound has a story to tell. And these kind gifts help celebrate the people who leave a lasting legacy for research: people like Beatrice.

A rare, but not forgotten cancer

Beatrice’s legacy sadly begins with a tragedy.

Back in May of 2005, her son Denis died of a rare type of immune system cancer called Waldenstrom’s macroglobulinaemia. So when Beatrice died and the time came to take care of her Will, Beatrice’s close friend and executor, Harry Everett, wanted her legacy gift to support the cause that he knew was close to her and her son’s heart.

There aren’t very many clinical trials specifically for this type of cancer

– Dr Rebecca Auer, Barts Cancer Institute

We were able to offer Harry the opportunity to directly fund research into this rare disease. And Beatrice’s generous gift was put towards a clinical trial for this type of cancer.

So even though they are no longer here today, Beatrice and Denis have played a part in helping bring important research to fruition, which may make a difference to the lives of people affected by this disease.

“Waldenstrom’s macroglobulinaemia is rare, so there aren’t very many clinical trials specifically for this type of cancer,” explains Dr Rebecca Auer, the lead researcher behind the study Beatrice’s legacy gift is helping fund.

“It’s also a fairly under-researched disease that’s often put under the umbrella of other immune system cancers that develop in a similar way – but it’s actually quite different.”

On the hunt for kinder treatments

Under this umbrella sit more than 60 different types of non Hodgkin lymphoma, and Waldenstrom’s macroglobulinaemia is just one of these. It’s the result of a kind of white blood cell, called a B cell, growing abnormally and overcrowding the bone marrow.

But this isn’t a quick process. The cancer takes years to develop, usually affecting older people in their 60s. In England, around 370 people are diagnosed with the disease every year*.

“Overall the survival for patients with this type of cancer is quite good, but there are other important issues that research needs to address,” says Auer.

“There is no one standard way to care for these patients, but harm to healthy blood cells is a common problem with the drugs often used. And you have to bear in mind that older people don’t cope as well with the effects that cancer drugs have on their body, so treating them can be tricky.

“That’s why we need more research to find treatments with fewer side effects that give better outcomes for patients,” she adds.

This is where Auer’s trial comes in. Previous work has suggested that a combination of two cancer drugs – bortezomib (Velcade) and rituximab (Mabthera) – is effective at treating the disease, but that there is still room for improvement. So Auer and her team wanted to see whether adding in a different drug, called cyclophosphamide, could help patients fare better.

“This was a new combination of drugs,” says Auer. “It hadn’t been used before in this way – as the first treatment given to these patients.”

In a total of 59 patients, the team compared this trio of drugs with one that doctors already sometimes use, which skips the cyclophosphamide but includes another drug used to treat blood cancers – fludarabine (Fludara).

Patients with Waldenstrom’s macroglobulinaemia have abnormally high levels of a molecule in their blood called IgM, so one of the main things the researchers were looking for was changes in the levels of this protein in response to the treatments.

The gift of research

Almost four years on from opening the trial, Auer is excited to share an early glimpse of her team’s promising findings.

Although overall both groups of patients did well on the different treatments, more patients responded to the new combination of drugs than the standard treatment used today – meaning the researchers could see that their levels of IgM had fallen, and their disease symptoms improved. And just as importantly, the trio of treatments on trial was kinder, resulting in fewer side effects for patients.

We could potentially have a new treatment for patients

– Dr Rebecca Auer, Barts Cancer Institute

“The results are very encouraging,” says Auer. “We could potentially have a new treatment for patients that seems to be highly effective.”

But we’re not there yet. First, scientists will need to back up these findings with a bigger trial involving more patients. And on top of that, Auer says it’s important that patients from her trial are followed up for a longer period of time to see how long their responses last and whether the new combination of drugs helps them live longer.

This important study has laid the foundations for that research, and the team hope to publish the final results soon.

Ultimately, this could mean better treatments and healthier lives for patients with Waldenstrom’s macroglobulinaemia. And even though she is no longer here today, Beatrice has played her part in making that happen.

“I would like to say a big, big thank you to Harry and Beatrice,” says Auer.

“It’s really a privilege. It’s an honour to be able to run a trial helped by such a generous gift.”

Gifts left in Wills fund over a third of our life-saving research and are vital in helping us beat cancer sooner. Find out how you can write a gift in your Will and help write an end to cancer.


*Calculated by the Statistical Information Team at Cancer Research UK based on the annual average number of Waldenstrom’s macroglobulinaemia (ICDO3 M9671, behaviour codes 3 only) cases of non Hodgkin lymphoma (ICD10 C82-C86) diagnosed between 2012-2014 in England. Please note that there may be further cases of non Hodgkin lymphoma that have not been classified with the appropriate morphology coding within this dataset, therefore this figure could be an underestimate.