Rodney was diagnosed with MDS at the age of 64. Within a couple of years, his symptom-free illness, at first, progressed to a hugely debilitating condition. Having entered a clinical trial of a promising drug treatment with azacitidine, Rodney was eventually freed from fatigue and transfusions for 4,5 long years, and decided to actively campaign for the approval of the drug by NICE. Having stopped responding to azacitidine, at the age of 71, he underwent a stem cell transplant.
One year on from the transplant, he is still coping well, despite some symptoms and GVHD, which are managed well under a close watch of the specialists at King’s.
“It was the day that I could no longer climb the stairs to bed that proved the turning point in my battle against the rare bone marrow disorder myelodysplastic syndrome (MDS).
(…) I was anaemic and weak, my appetite was poor and I had such bad pain in my bones that I could not get out of the bath or raise my foot sufficiently to climb the stairs. Then my consultant, Professor Mufti, a world authority on the disease, at King’s College Hospital in South-East London, gave me a lifeline. He prescribed the disease-specific drug azacitidine. It had an amazing, transforming effect.”
Diagnosed with MDS, at the age of 64 Experience of azacitidine and involvement in the campaign for azacitidine approval by NICE
Experience of stem cell transplant, at the age of 71
Rodney is an MDS patient and a physician specialising in gastroenterology. He is also a Trustee and Director of MDS UK Patient Support Group and chairman of our Committee. Visit ‘Our Committee’ page on this website to read Rodney’s professional profile.
Having benefited greatly from azacitidine, which he received while on a Clinical Trials of the drug, Rodney then took part in the NICE Appraisal of azacitidine for the treatment of MDS in NHS, acting as a patient expert consultee.
His story with MDS and experience of azacitidine featured in an article published in Daily Mail in March 2010, as part of the campaign to appeal the initial negative NICE decision on azacitidine.
The appeal was successful and azacitidine is now recommended by NICE and prescribed in NHS as a treatment option for adults who are not eligible for haematopoietic stem cell transplantation and have intermediate-2 and high-risk MDS.
Read more about the NICE Appraisal of azacitidine and our involvement in it on our website:
NICE Appraisal of azacitidine (Vidaza) for the treatment of MDS
Main Points from Parliamentary Lobby
Azacitidine Campaign Media Coverage
Below is the Daily Mail article on Rodney’s experience, with the additional updates from us at the bottom:
By Professor Rodney Taylor – 27 March 2010, Daily Mail article.
It was the day that I could no longer climb the stairs to bed that proved the turning point in my battle against the rare bone marrow disorder myelodysplastic syndrome (MDS).
Having been diagnosed with the disease four years ago, my cell count plummeted last July – despite having undergone a number of blood and platelet transfusions.
I was anaemic and weak, my appetite was poor and I had such bad pain in my bones that I could not get out of the bath or raise my foot sufficiently to climb the stairs.
Then my consultant, Professor Ghulam Mufti, a world authority on the disease, at King’s College Hospital in South-East London, gave me a lifeline. He prescribed the disease-specific drug azacitidine. It had an amazing, transforming effect.
‘I’m lucky: Thanks to azacitidine, Professor Rodney Taylor is now healthy enough to undergo the transplant that may cure him’
My haemoglobin level, the measure of how bad my anaemia is, has risen gradually from a life threatening five over the past eight months to 16 today, which is normal.
But I am one of the fortunate ones. This month the National Institute for Health and Clinical Excellence (NICE), which recommends the provision of licensed drugs for use by the NHS, rejected azacitidine.
Recently it has also rejected nine other drugs that could have benefited more than 16,000 cancer patients in the UK – on the grounds that they are too expensive.
While NICE recognised that azacitidine was clinically effective and extended end-of-life treatment, according to their specific criteria, they decided not to approve it for people with MDS, chronic myelomonocytic leukaemia or acute myeloid leukaemia as it costs £45,000 a year per person.
That is nothing compared with the total costs of radiotherapy, chemotherapy, surgery and post-op care which can mount up to more than £100,000.
As a physician – I am currently a visiting Professor of Bioethics at St Mary’s University College and a tutor in medical ethics and law at Imperial College School of Medicine – I believe that decision is wrong.
As the deputy chairman of the MDS UK Patient Support group and a member of Patients Involved in NICE, I am appealing to them to reverse that ruling on behalf of the 700 patients a year who need the drug.
MDS is a debilitating disease, affecting one in 25,000 people in Britain. It can lead to complications such as recurrent or life-threatening infections or bleeding if platelet levels drop.
Most patients rely on frequent blood transfusions to manage anaemia and extreme fatigue, as well as platelet transfusions.
While the average survival of patients with MDS is about 20 months, 30 per cent progress to acute myeloid leukaemia, a very aggressive and resistant form of leukaemia , with an average survival period of only a few months.
Azacitidine, which is manufactured by Celgene under the trade name Vidaza, is the only licensed drug available to specifically treat MDS and has proved not only to slow the progress of the disease but to improve patients’ quality of life by freeing them from repeated blood transfusions. It certainly has improved mine.
I was first diagnosed with MDS in 2006 aged 64 when I was working as a consultant gastro-enterologist at Ealing Hospital. I had been on holiday in Libya with my wife Janet, an obstetrician and gynaecologist, eating a Mediterranean/North African diet with no alcohol, and thought it was a great opportunity to measure my cholesterol.
However, after I had a blood test, my haematologist said: ‘This is not right.’ The neutrophils, those white blood cells that are needed to fight infection, were seriously reduced.
At the time I was pretty well in myself. I had no symptoms so, although I was concerned, I thought: ‘This can’t be that bad.’ I knew acute myeloid leukaemia was a risk but I was fairly optimistic.
I told my children – Alice, 29, a vet, Romilly, 27, an economist, and Beatrice, 24, a teacher – and carried on as normal, having blood tests at three to six-monthly intervals to monitor my blood picture.
The following year I retired from clinical practice but it was not until the autumn of 2008 that I noted an insidious change.
I was due to be going to Singapore and Australia with Janet for a working holiday but I felt tired, lacked energy and didn’t feel up to it, so I cancelled. I returned to King’s, where tests revealed that my red and white blood cell lines and my platelets had dropped.
I was anaemic so I was given two drugs – granulocyte colony-stimulating factor (GCSF), which stimulates the bone marrow to produce white blood cells, and erythropoietin, which stimulates the bone marrow to produce red blood cells. These came in pre-loaded syringes, and I injected myself, one twice weekly and the other weekly.
They did not have the desired effect so I had to have eight blood transfusions over the next six months, and two lots of platelets to lower my risk of bleeding.
I would spend the day at the West Middlesex University Hospital, near my home at Hampton Hill in South-West London, having three 300ml units of blood run into my body through a cannula into a vein in my arm. Each unit took about two hours, so these were boring days.
The following day I would feel almost normal again although still more tired – I was inclined to doze off during the afternoon, which was not like me. Then, three weeks later, I would go through the whole cycle again.
After I deteriorated, King’s put me into a research programme on azacitidine. The unpleasant alternative, which other patients will have to endure unless NICE reverses its decision, is chemotherapy – or just best supportive care.
Although I have to travel to King’s for a week a month for the one minutejab – I began with 14 injections-over seven days and am now down to five injections in five days – it has transformed my life.
I am now well enough to have a bone marrow transplant, the only potential cure for MDS – 40 per cent of those who have transplants live beyond two years. I have three potential donors and am hoping to have the operation this summer.
I could remain on azacitidine longer but then I would be that much older and my condition could worsen again despite drug treatment. A successful transplant depends on a lot of things, not just the match but the state of your heart, lungs, kidney and liver. If you are well, you optimise your chances.
Generally those who remain on azacitidine are not eligible for transplantation. Anecdotally, I know of somebody who has taken it for seven years and is still in good health.
Even so, I am understandably quite apprehensive. I will have to have chemotherapy to suppress my bone marrow and immuno-suppression drugs so that I don’t reject the transplant. I anticipate being in hospital for six weeks, during which time visiting will be very limited, as I will be at high risk of acquiring infections.
But if all goes well, I will have a new lease of life and the prospect of a cure. That would not have been possible without azacitidine.”
Read the full article on Daily Mail website: http://www.dailymail.co.uk/health/article-1261234/A-new-bone-marrow-drug-alternative-chemotherapy-saving-life-So-rejected-NICE.html#ixzz2cmYDnP2E
Update – March 2011
Azacitidine is now approved by NICE for use in the NHS.
It is recommended as a treatment option for adults who are not eligible for a stem cell transplantation and have the following sub-types of MDS – or have progressed to leukaemia:
- Intermediate-2 or high-risk MDS according to the International Prognostic Scoring System (IPSS)
- CMML (chronic myelomonocytic leukaemia) - with 10–29% marrow blasts without myeloproliferative disorder
- AML – Acute Myeloid Leukaemia – with 20–30% blasts and multilineage dysplasia
Update – October 2013
Rodney Taylor is now on his 52nd cycle of azacitidine and is 71 years old.
This means the drug has given him so far over 4 years of normal life, still being transfusion free.
He leads an extremely busy life and his haemoglobin is remaining normal and stable.
He has been on several holidays. Getting travel insurance does still remain a problem, and requires many hours trying to explain to travel insurance companies that he is actually fit to travel, despite needing regular treatment, and being neutropenic. The battle to obtain travel insurance is frustrating , but he has managed to get coverage eventually each time – and has enjoyed trips to Europe and the USA.
The decision to transplant has been postponed so far, as his response to azacitidine is so good.
Please remember – Not everyone will respond as well to this drug, but for many patients it has proven very effective.
This is a drug that should be tried, and must be given for at least 6 cycles to assess potential response.
Please speak to your haematologist or nurse specialist about it.
Update – August 2015
Following 4,5 years of being effectively treated with azacitidine, Rodney stopped responding to the drug in the beginning of year 2014. The average response time is 2 years.
Considering his otherwise sound health, the stem cell transplant was still considered a viable treatment option, and he underwent the procedure in July 2014 at the age of 71. This is considered the uppermost age limit for patients who are otherwise fairly fit and in good health.
Following the transplant Rodney did experience some typical as well as some less usual side effects such as severe fatigue and some graft versus host disease (GVHD) and required treatment with steroids and anti-clotting agents.
Side effects and symptoms of GVHD can vary greatly across patients, as no two patients will respond to the transplant in the same way.
One year on from his transplant, Rodney is still doing well and coping with fatigue and other mild symptoms. He also remains an active contributor to the work of our Support Group.