Hi all.
Just would like some opinions if possible. I have been on before about the issues I have regarding side effects since diagnosis.
I was diagnosed June 2013 at 33. Superfit. I am a firefighter who has still struggled to resume normal duties.
After pain around body, mainly neck, arm and but also other joints my consultant decided to give Nilotinib a break. The break started end of November when my PCR was 0.00... Fast forward to 26th February and my consultants screen looked like this...
December... PCR 0.00
January... PCR 0.05 - BCR/ABL: 58
February... PCR 1.5 - BCR/ABL: 768
Basically I saw a new consultant at my centre for excellence who seemed to be of the opinion this was increasing 20 fold and my next PCR taken the day of my visit could be considerably higher. He mentioned that messing with treatment can very much increase your chances of the disease progressing and becoming acute. He said looking at how quick the result was climbing if it continued without treatment or if there was a treatment problem, this would probably mean a 2 year survival.
I was originally taken off Nilotinib, I would say I felt 50% better, my main benefit was feeling so much more energetic and the clarity of mind. I have since been referred to see a Neurologist, his initial opinion was the pain I was experiencing in my arm and neck could be nerve damage from the TKI's. Nerve conduction happening soon.
I am quite confused about all this. I just wanted to hear if my latest PCR results look alarming to other CML'ers. My wife was in tears when she listened to the consultant and I have tried to reassure her.
The confusion surrounding TKI's seem to get compounded on each medical opinion I get from various departments.
Anyway I have restarted Nilotinib at 150mg ONCE a day. Even though I would of quite happily went to what ever it takes to get my PCR down and mentioned this.
Is over 2 month too long off Treatment? Could this have very bad consequence at a later stage?
I did get a nice kiss off my 15 month old when I came out of the appointment, maybe because I had just given him a cookie however! So that was the days high point!
Take care all! Thanks again for all your help in advance!
John