I was diagnosed on my 51st birthday in November 2001. To say I was totally devastated would be an understatement. The shock nearly killed me; I had absolutely no idea whatsoever that I was so poorly.
I had been to my GP as shortly before I noticed I had lost some weight – my regular clothes size, especially my trousers, were too big. I was also suffering an increased amount of hot flushes. Well, I thought they were hot flushes, but they were actually not. I also had a tingling feeling in the tips of my fingers and tiredness.
My GP felt I needed an increase in Hormone Replacement Therapy (HRT) and sent me for a full blood count. She wanted to check my hormone levels and asked me to go back to see her 10 days later for the results.
The following day, my birthday, I received a phone call from the GP asking me to go immediately to my local hospital to see a doctor as I needed to start some treatment as soon as possible. I couldn’t believe it. The GP said there was a problem with my blood results, and I obviously asked what was wrong, but he said he didn’t know for sure except my platelets were high and it was imperative I attended Watford General Hospital. On the way in the car, I prayed it was some type of anaemia, but I knew somehow it was going to be far worse. You don’t have bloods taken one day and have to attend hospital the next day for nothing.
Before I had my family, I was a medical secretary. I learnt a lot in those days, so together with my weight loss and medical experience, I knew I was heading for trouble.
Even so, the shock of being told “you have a form of leukaemia, we are not sure yet which type but we think it’s chronic myeloid leukaemia (CML)” was devastating. The doctor said I had three to five years to live. I could not take it all in. My husband was with me, and he too broke down. We felt as though we had been given the death sentence. The doctor asked us to come back a few days later for a bone marrow biopsy (BMB) and ultrasound of my abdomen. She said if it was confirmed CML, I would start on interferon, with side effects of flu-like symptoms.
I still can’t remember everything she said that afternoon, it was an absolute blur. I came home with large bagfuls of medicines including a drug to help lower my white blood cell count (WBC) and meds to reduce my platelets. They were dangerously very high with a risk of me having a blood clot, hence the urgency of having to attend hospital immediately. I felt so nauseous, it was so hard trying to get all the meds down, and I was trembling for ages.
From that day every week for about two to three months, I was in clinic. My bloods kept crashing, I needed blood transfusions, platelet transfusions. They were matching me for a possible bone marrow transplant (BMT) and so it went on. The initial shock had calmed down a bit and the focus to get rid of the disease was the most important.
My son had graduated in medicine a few months before I was diagnosed, and I feel I owe my life to him. He researched day and night about CML and found the top specialist at the best centre in the UK offering the best treatment.
From there, I got transferred from Watford General to the Hammersmith Hospital and I started on the magic bullet Glivec (imatinib) 400mg. We had to pay for the drug for the first year as it wasn’t on the NHS, but results were coming through on how amazing Glivec was for CML. I had side effects from the drug but always had plenty of remedies to help these problems.
Within two months of starting Glivec, my PCR had come right down from being diagnosed and so the talk of a BMT was quickly put on the back burner!
Seven years ago, I came off Glivec to see if I could sustain my deep molecular response, but unfortunately my CML returned after only five months.
Since being diagnosed in November 2001, both my son and daughter are married and have given me four precious, adorable grandchildren, something that I never ever thought would happen to me back on that dreadful, heart-breaking worst day of my entire life. I feel very, very lucky indeed.
I once again tried recently to stop taking Glivec, but the CML returned. I’m now just about used to being back on meds and managing the side effects – gastro and very tired. I felt better when I wasn’t taking imatinib, but obviously I need it for my CML. The Hammersmith are saying we will try and stop again in the future (this was certainly not the last attempt) when my PCR is in deep remission for a while. They think one day will come when I won’t need to go back on meds, but they can’t say for sure when it will be. They are thinking of trying to lower the dose even more in the future, which I was pleased to hear.
So, in November it will be 18 years since diagnosis. Given that back in 2001 I was given a maximum of five years to live, I honestly feel like I am a living miracle! No words can express the gratitude I have for the medical research done to find this breakthrough bullet drug, as well as, of course, the incredible care and support I have had from my wonderful haematology ‘family’ at Hammersmith Hospital. Needless to say, I am one very happy Grandma! Here’s to the next 18 years plus!