Nilotinib Patient Stories
My Tasigna Story
by Pennie Douglas, UK
By the end of 2007 it was decided by the doctors and myself that the time had come to try
a different drug for my CML. The side effects on Gleevec had become intolerable.
Terrible skin problems, very thin skin that tore and became infected at the slightest touch.
Serious edema all over, particularly on my face, periorbital, and my legs. The legs
were the size of small tree trunks and very painful. Fatigue levels were so bad I had to
spend half of each day resting. Leg cramps kept me awake at night and night sweats
added to the problems. Plus my PCR count was always fluctuating in the lower levels,
but never steady and I couldn't get to that elusive zero.
On Jan 2nd 2008 I took my first doses of Tasigna (Nilotinib / AMN 107) 800 mg. The
initial side effects were a red hot very itchy rash on my arms. I had some nausea and
diarrhoea, a certain amount of bone pain in my back and hips. I was 'peeing' loads. By
the 3rd day I was very badly constipated - with pain and cramps. The bone pain
continued and I felt very weak. - Had we made the wrong decision? I felt worse than on
Gleevec. Over the next few days the pain levels increased and the constipation became
chronic.. By Jan 8th I was so ill I ended up in hospital. There after a horrid 2 days I was
diagnosed with Gall stones. I think this is too coincidental with taking Tasigna - the
doctors don't! Not ever having suffered before with gallstones it seems to me - a non
medical person - as if they are linked. At least it wasn't pancreatitis according to the
blood tests, but the pain told me otherwise.
After my stay in hospital I was off the drug for a week, then I resumed at 800 mg daily.
All the horrid side effects restarted.
At the start of February I was allowed to drop the dose to 400mg daily. Since then life
has been a peach - I feel wonderful, all edema is gone, my face looks normal for the first
time in years, and best of all I have dropped two sizes in clothes. There are still some
problems with a skin rash - like little pustules on my face and in my hair that come and
go at random, I have some bone pain but minor compared to on Gleevec and I still tend
towards constipation. That's sorted by taking Senna tablets and by eating a very healthy
fruit and veg diet.
My PCR results haven't reached to the much wanted 0.000, but they are low Feb 0.027
May 0.430 June 0.112. It looks as if my bobbling PCR is still with me.
My Tasigna Story
by Pennie Douglas, UK
By the end of 2007 it was decided by the doctors and myself that the time had come to try
a different drug for my CML. The side effects on Gleevec had become intolerable.
Terrible skin problems, very thin skin that tore and became infected at the slightest touch.
Serious edema all over, particularly on my face, periorbital, and my legs. The legs
were the size of small tree trunks and very painful. Fatigue levels were so bad I had to
spend half of each day resting. Leg cramps kept me awake at night and night sweats
added to the problems. Plus my PCR count was always fluctuating in the lower levels,
but never steady and I couldn't get to that elusive zero.
On Jan 2nd 2008 I took my first doses of Tasigna (Nilotinib / AMN 107) 800 mg. The
initial side effects were a red hot very itchy rash on my arms. I had some nausea and
diarrhoea, a certain amount of bone pain in my back and hips. I was 'peeing' loads. By
the 3rd day I was very badly constipated - with pain and cramps. The bone pain
continued and I felt very weak. - Had we made the wrong decision? I felt worse than on
Gleevec. Over the next few days the pain levels increased and the constipation became
chronic.. By Jan 8th I was so ill I ended up in hospital. There after a horrid 2 days I was
diagnosed with Gall stones. I think this is too coincidental with taking Tasigna - the
doctors don't! Not ever having suffered before with gallstones it seems to me - a non
medical person - as if they are linked. At least it wasn't pancreatitis according to the
blood tests, but the pain told me otherwise.
After my stay in hospital I was off the drug for a week, then I resumed at 800 mg daily.
All the horrid side effects restarted.
At the start of February I was allowed to drop the dose to 400mg daily. Since then life
has been a peach - I feel wonderful, all edema is gone, my face looks normal for the first
time in years, and best of all I have dropped two sizes in clothes. There are still some
problems with a skin rash - like little pustules on my face and in my hair that come and
go at random, I have some bone pain but minor compared to on Gleevec and I still tend
towards constipation. That's sorted by taking Senna tablets and by eating a very healthy
fruit and veg diet.
My PCR results haven't reached to the much wanted 0.000, but they are low Feb 0.027
May 0.430 June 0.112. It looks as if my bobbling PCR is still with me.
Pennie on Gleevec
A new Pennie on
Tasigna. Less fluid
retention.
Tasigna. Less fluid
retention.