Just had my first appointment with my local Consultant after stopping Glivec 3 months ago with the support of HH. Didn't know what to expect as up to now, like many other medics he has advised against stopping Glivec.
After reading letters from HH and information from a recent conference in Germany which debated this very subject, he is immensely supportive of my decision and wishes more patients would be willing to "take the plunge" if their circumstances were right. He was very interested in how much better I feel without Glivec. and asked me to write a few lines detailing the difference in my wellbeing in order to submit an abstract to the forthcoming conference in Cairo.
The following is what I sent to him.
After diagnosis in April 2003 I was given interferon with which I struggled for 9 weeks . I then requested a change of therapy and started on Glivec. After the dreadful side effects of interferon I was immensely grateful for feeling 100% better on Glivec and became PCR negative, which was sustained for almost 3 years, when I took the decision (with the support of my doctors) to see if PCR negative could be maintained without Glivec. (3 months on still PCR negative)
The change in my wellbeing was amazing.
Within 3 days my lethargy lifted and I felt as though I had come out of first gear. Chronic fatigue spells have disappeared.
Daily muscle cramps in hands, feet (instep) and back disappeared resulting in no more quinine.
My eyes which had developed conjunctival cysts due to fluid retention became pain free, the constant grittiness and watering disappeared. ( No more lubricants).My sight which was blurred first thing in the morning, is now normal.
Insomnia lessened remarkably, periods of profound depression disappeared, (no more temazepam).
I can now eat crisps and French bread, etc without developing a mouthful of blood blisters.
Morning nausea has gone and I can eat breakfast at breakfast time instead of lunch time.
Diarrhoea has ceased.
Up until stopping Glivec I had no idea how much my life was affected and how I must have felt prior to CML. One tolerates side effects partly through gratitude to the drug and partly because you get used to them and treat them as a part of life.
Maybe other people can identify with these problems and is interesting to read that Nilotinib may be the first line therapy in forthcoming years.
I have another PCR in 2 weeks at HH and will keep you informed.
