Bridgnorth, Shropshire, UK
1962 / Class of 1999 / Type: Kappa Light-chain, BJP / Died 4-11-08
I grew up in the suburbs of a large town called Wolverhampton, but I’m currently living in a small market town. I had a pretty privileged upbringing, going to Public (in the U.S., this is “private”) school for most of my academic life. My father had a good job and we were very comfortable. I suffered with the usual childhood illnesses but had no significant illness that could have triggered MM. Up until the diagnosis, I had been healthy and active looking after my 3-year-old daughter as I was a single parent.
This time last year (June, 1999) I was experiencing severe discomfort in my back and hip which my GP thought was sciatica. However, after several visits back and forth he decided to send me for an X-ray. This showed up a problem with my bones and although I had no idea of what was lurking they gave me the impression that something was seriously wrong. After a visit to 2 other specialists it was decided to admit me to Oswestry Orthopaedic Hospital for a bone marrow biopsy. I was also informed that my left femur would need to be pinned as it was in a very bad way. The biopsy confirmed MM, and after the surgery on my leg I was transferred to Shrewsbury Royal Hospital under the guidance of haematologist - Dr. Nigel O'Connor. I then started the first of 4 cycles of VAD plus Prednisone.
In November 1999 I went to the Q.E. Hospital in Birmingham for a stem cell transplant. I was also randomised and selected for a 2nd transplant to be performed 3 months later. I sailed through the first transplant and was out of hospital in just over 2 weeks with few side effects.
The second transplant however, hit much harder, and I had problems with very low blood pressure and terrible sickness and diarrhoea. Nonetheless, I was still out of hospital in 3 weeks but had lost a lot of weight and it took me much longer to recover.
My marrow involvement was originally 68% and now is less than 2%, according to the last biopsy done earlier this month. I take Fosamax daily and Zoton as well as hormone-replacement therapy as I have gone into early menopause. Other than being very stiff in a morning and after sitting for any length of time, I feel very well and lead a normal life with my now 4-year-old. We go swimming twice a week and we socialise a lot with friends.
I am determined to last as long as I can for my daughter’s sake and hopefully in the meantime they will come up with a cure or at least be able to keep the disease at bay.
My advice to people with this disease is to keep positive and surround yourself with positive people. Also pack as much into your life as possible and treat every day as if it's your last!
November, 2002: Although my Myeloma was thought to have returned in October 2000, a deep biopsy of my right hip and further blood tests revealed no activity whatsoever. So back I went to being a Mum, daughter and friend to those folks around me. I felt well and had (and still have) the occasional cold or chest infection which would put me in bed for a day or so, for which I was given 6 weekly infusions of Vigam immunoglobulin. Life was great and I had some fabulous holidays with friends and family. My daughter suspected nothing and we enjoyed a "normal" relationship.
I was going for my usual 6 weekly infusions of Vigam and 10 weekly infusions of Pamidronate as well as regular blood tests. Things were soon to change. After being in remission for over 2 years my haematologist said that there was a slight rise in my levels of protein and further tests would need to be conducted. A BMB was done but showed nothing abnormal. I am now waiting for the results of more in-depth blood tests to see what's going on. A skeletal bone scan is to be performed to see if there are any pockets of mm lurking and it may be possible that I am entered onto a trial of PS 341.
August, 2005: It's been a long time since I updated my story, so felt I should let you know what's been happening: In September 2004, I relapsed again after being on a Velcade trial which initially worked very well. Then I commenced Cyclophosphamide, thalidomide and Dexamethasone regime. I responded very well to this. I had my 3rd Stem Cell transplant in January 2005, and up until 3 weeks ago I was very active, walking, swimming and even playing squash! My daughter is now 9 years old and we have a great life together. I am still a single Mum and am happy this way.
I have recently learnt that the Myeloma is back, and I have an appt soon at The Royal Marsden Hospital in London for a biopsy and re-staging. I am pretty scared as I am running out of options and there is some talk of doing a Mini Allo. I know the risks attached to this. My brother was not a match so it would mean a non related donor which makes it even more risky. My philosophy is that if I'm going to die, I'd rather die trying to beat this disease. Why oh why can't they find a cure for this damned thing? How can I leave my daughter? She hasn't seen her father since she was 3 weeks old, and although my parents would care for her, they are not going to live forever... she needs me, so I am determined to stay alive for her.
September, 2005: Went to Royal Marsden and saw a Professor Gareth Morgan who was convinced that I had not relapsed according to their tests. So now I am very confused, as I have 2 hospitals saying different things. I'm due back at the Marsden in 2 months for a re-check, and they said that if I have relapsed by then, then they will put me on Revlimid, which, of course, is not licensed here in Britain yet. Prof Morgan has ways and means of persuading the pharmaceutacal companies of parting with the drug at a cost of £5000 per month. Thank God for the NHS is what I say, as I would be unable to afford it if I had to pay for it.
Here in Britain we have what is called a "post code lottery" and if you live or are treated in the right area (which I do and am, fortunately) you get treated with the expensive drugs. If not, then you have a fight on your hands. It's sooooooooooo unfair, and if people haven't got the energy or expertise to fight their cause, they suffer! I am so lucky in that I am a fighter and have good advice, and if I was to have all my treatment at my local hospital then I would be offered minimal drugs but because I asked to be transferred to The Royal Marsden in London (3 hours' drive) I get access to all the new treatments.
So I am very confused at the moment, but feel well and am preparing for my 9 yr old daughter to return to school. We have had a lovely summer break and we are looking forward to Halloween and Christmas!!!
Love and best wishes to each and every one of you,
A brave mother who battled cancer seven times in a determined bid to see her only daughter grow up has died aged 46. Jane Simpson was told she had an incurable cancer in 1999. She was given just two years, but she defied doctors and embarked on a course of stem cell treatment and chemotherapy and was told the disease was in remission. It returned just months later, triggering a recurring pattern which dogged the rest of her life.
Courageous Jane, from Clee View Road, Bridgnorth, set herself targets to spend as much time with her 12-year-old daughter as she could, including watching her start primary school in Bridgnorth before moving to The Royal Wolverhampton School.
But following eight bouts of the disease, transplants, regular treatment and doctors’ warnings that there was no cure, she died at the Abbotts Way home of her parents Robert and Margaret Simpson on Friday.
Just months ago, the brave mother, who was born in Wombourne and lived in Wolverhampton before moving to Bridgnorth, told the Express & Star that she would have loved to see Samantha finish school and walk her down the aisle.
Jane’s illness started when she felt pains in her left leg and doctors gave her the devastating news that she was suffering from the incurable bone cancer, myeloma. Her mother has paid tribute to Jane, describing her as “the bravest person that I ever knew.”
Myeloma UK has made a film of the family coping with Jane’s cancer, which was shown last year and raised £750,000 for research into the illness.
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