I have a rare bone marrow cancer, I need a donor but can't find a match
A grandmother who suddenly lost 10lbs in just nine months has been diagnosed with a rare bone marrow cancer is urging more people to join the stem cell donor register to help her find a donor.
Anne Juliff, 69, was first diagnosed with blood cancer 12 years ago. But in April 2022, after losing weight and not feeling hungry, she went to her doctor and was told the blood cancer had become myelofibrosis, a rare bone marrow cancer.
Myelofibrosis means that fibrous or scar tissue builds up inside the bone marrow and bone cells aren’t able to develop properly, according to Cancer Research UK. As a result, the bone marrow gradually produces fewer blood cells, which can lead to anaemia.
As production of blood cells from the bone marrow falls, the liver and spleen try to compensate by making more blood cells, but they are less effective. The spleen can also become enlarged because it keeps hold of red blood cells instead of releasing them into the blood stream, which can cause patients to feel full when they eat.
Symptoms of myelofibrosis include tiredness, shortness of breath, bleeding and bruising easily, pain and discomfort in the stomach as well as loss of appetite and weight loss, bone pain, gout, and itchy skin.
Juliff, from Camberwell in south London, was warned in 2022 that she had just “four years to live” if she didn’t find a donor. It has been more than two years since and she still does not have a match.
She turned to stem cell charity Anthony Nolan for help, but the organisation has been unsuccessful in finding her a donor despite looking through its entire database.
But the retired piano teacher is not ready to give up just yet. “I am an upbeat person - if I get bad news it hits me for a couple of days and then I get on with life,” she said. “It is a scary situation but I haven’t given up on getting a donor yet.”
She praised the NHS for giving her the “best treatment possible”, adding: “If it doesn't work out, they have done everything they could… I won't be left thinking 'if only'. I have been very lucky with the treatment I have received so far."
More than a decade ago, Juliff was diagnosed with the blood cancer polycyhaemia vera, but the condition was managed.
However, last April, she sought help from King’s Hospital in London after losing so much weight so quickly and losing her appetite. A biopsy revealed she had myelofibrosis.
In August 2022, Juliff started to deteriorate with fatigue and was unable to move while on holiday in Illetas, Mallorca. She underwent months of blood transfusions and was eventually given momelotinib, an anti-cancer medication used to treat myelofibrosis.
She said the medication changed her life and she can’t feel the effects of her cancer now. While it “can’t keep the cancer at bay”, it helps to keep her “haemoglobin levels high”, which helps her “get on day-to-day and forget about it”.
But in April this year, she was told she would need a stem cell transplant. Stem cell or bone marrow transplants involve destroying and removing damaged blood cells with healthy ones. The stem cells must come from a person with the same or similar tissue type, ideally a close family member.
But Juliff has not been able to find a donor so far. She said: “It was three months ago since [Anthony Nolan] last checked for me and there was no donor. During the last eight months, in the beginning especially, I was hopeful.
“Now I am on these new drugs, I don’t think about my cancer often. I know my life expectancy is short. Four years has been mentioned and I have had two years of that. But over time there are new treatments and drugs that come out, so I am still hopeful.”
How to donate stem cells
If you’re interested in donating your stem cells, you must first check if you are eligible to join a stem cell register. Anthony Nolan requires donors to be aged between 16 to 30, as research has shown that younger donors increase a patients’ chance of surviving. However, the NHS’s registry - the British Bone Marrow Registry (BBMR), accepts donors between 17-40 years of age.
Both registries are encouraging men and people from a minority ethnic background to become donors.
You can apply to join Anthony Nolan’s stem cell register by filling in an online form and answering a medical questionnaire. Once your application is approved, you will receive a swab that you must complete and post back in order to be processed by the charity’s laboratory to find out your tissue type.
Once you’ve done this, you will receive an email and a donor card in the post. Anthony Nolan will contact you if you are a match for someone who needs your stem cells and you can donate them.
In order to join the BBMR, you can become a blood donor with the NHS and tell the staff you wish to join the register. They will check there are no medical reasons to prevent you from donating both blood and stem cells, and take an extra blood sample to extract your DNA to match patients and donors.
If you come up as a potential match for someone who needs stem cells, the NHS will contact you to discuss the process and ask for further blood samples.
If you live in Wales and wish to become a stem cell donor, you can consider joining the Welsh Bone Marrow Donor Registry, which is operated by the Welsh Blood Service.
You don’t have to join multiple UK registries in order to be a stem cell donor. All registries share matching information on an anonymous basis.
Read more on blood cancer:
More than half of UK adults cannot name a single symptom of blood cancer – poll (PA Media, 2-min read)
Jurassic Park’s Sam Neill "not remotely afraid" of dying amid cancer battle (Digital Spy, 2-min read)
‘Life-changing’ blood cancer drug fast-tracked by NHS (The Telegraph, 2-min read)
