Page 24 - January Phonebox Magazine 2012

I was pleased to have read an article by emma Hall about being a bone marrow stem cell donor in the december ‘phonebox’.
Carol our daughter, was fortunate enough very recently, to have been the recipient of stem cells given by, we were told, a ‘big German 43 year old man’, that is all we know so far. He is apparently a superb match.
Carol, a freelance professional
Trombonist, keyboard, backing
vocalist and music arranger, is
from Newport pagnell where we,
her parents, still live. she was diagnosed with Hodgkin’s lymphoma in 2004, normally this is a straightforward cancer for around 95 per cent of those diagnosed who are successfully treated, but Carol happened to be in the 5 per cent whose disease is refractory or resistant.
Carol went on to have, among other treatments, her own bone marrow stem cell transplant, involving a good number of quite destructive chemotherapy drugs (called BeaM) to enable her whole bone marrow system to be ‘wiped’ and then re- started by her own stem cells. The process of giving these cells was beautifully described in the article, not particularly painful apart from slight aches in the long bones while the stem cells are being generated and then released. Unfortunately Carol’s was not a success so she went on to have several other, also unfortunately, unsuccessful treatments. all this was while continuing with her career, even touring with the likes of Michael Bolton and seal; even having done some of seal’s arrangements!
Finally in 2011 there was a trial drug which proved really useful, a drug involving a poison but linked together with an antibody which searched out a protein on her Hodgkin’s cancer cells, called Cd30, then delivering that poison with the aim of killing
Carol
off those nasty resistant cancer cells. This drug was known as sGN35 but has since been licensed by the american Federal drugs administration (Fda) as adcetris.
It has been so successful in the UK that in her hospital, the famous Christie in Manchester, there has been a comparatively large number of patients being successfully treated who have gone on to have a donor Transplant. To our relief, after her 7 years of treatment, this included Carol, who had at last been given the magical word of ‘Remission’.
Carol was admitted in mid september, then had what is called a ‘mini-BeaM’, a less traumatic combination of chemotherapy drugs than she had had before, though still tough to cope with, making her feel quite ill and giving her a sore mouth and throat. It became very hard for her to swallow, even soft food and drinks were hard to cope with but ice cream and well chilled drinks were tolerated. within a week Carol was given her donor cells in a large infusion, but she had already been primed with a powerful anti-rejection drug to confuse and eradicate the remainder of her own immune system.
It took a month’s stay in hospital till Carol was well enough, with a good recovery of her new white cells, and was allowed
home. By now, yes, she had lost weight, and her energy levels were almost non-existent too.
she will need to continue taking the anti-rejection drug for a few more months, and antibiotics, antivirals and antifungal drugs for a whole year. she continues to be at risk from any possible infection so has to take care, especially during these winter months with many bugs around, and has to attend clinics back in the hospital at least once weekly, but needing infusions of red cells and platelets from time to time
since those take quite a lot longer to recover, their regeneration is affected by the anti-rejection drug.
Carol is still in the early stages, this treatment needs the patient to stay fairly close to the hospital for anything up to a year, certainly no foreign holidays or even working tours. she tires very easily and is too weak to do very much at all as yet, but she is alive and fighting hard to recover.
every day she gives heartfelt thanks (as do we too!) to her unknown donor who has given her, once she was in remission, a completely new immune system to hopefully fight any possible remnant of the cancer in her body, to enable her eventually to live a full and active life. Her blood group will change, taking quite a long time to get completely from O Rhesus negative to a Rhesus positive! we all find the science behind this incredibly clever.
please, folk, do not be afraid of joining to help, all it needs is blood tests to determine your type and tissue match to be held on the central register. and imagine the buzz it would give if you helped save some lives!
Helen Jarvis
Further info on becoming a donor can be found here: http://www.nhsbt.nhs.uk/bonemarrow/ http://www.anthonynolan.org/
Bone Marrow Donation
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24 Phonebox Magazine