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Long term use of Imatinib

Dear Sandy

Have just finished hours of reading on your excellent site. Nevertheless I am concerned that I am wobbling about on my PCR again. I am anxious to know what drugs I could change to if necessary. Have been on 400mg Gleevec since 2001 and 600mg since 2005 until now. Please can you help me to become an educated patient again. I have let my knowledge slip apart from what I have read today about the latest trials etc. As I was one of the first patients on Gleevec I still wonder what it might still do.

Writing this to you brings back good memories of our earlier times together, although we had a few mountains to climb didn't we? Much love, Pat

Dear Pat, good to hear from you again. I hope all is well with you. You do not say what your PCR results are but anyway here are the latest in 2nd and 3rd generation TKis- you have been on imatinib/Glivec a long time.

nilotinib/Tasigna- still good and helping people who find their PCRs either wobble and are not low enough- 0.1% or 3 log reduction.
dasatinib/Sprycel- only currently available through CDF (cancer drug fund) but we are hoping it will become available again soon.
bosutinib/bosulif- just about to go through the NICE appraisal process (June) but available at certain centres.
ponatiib/iclusig- still in trial but looking like a very good drug because it deals with the T315i mutation( which is pretty impressive in itself) will be available in UK soon through the SPIRIT 3 trial and is available through certain centres.

Hope this helps,
Sandy

Dear Sandy, Yes your information is valuable to me and makes me feel stronger already. My PCR's are still low but they are slowly changing upwards. They have been at 0.000 since 2005 when I began on the 600mg Glivec. There has been one blip two years ago but eventually low figures came back for a short period but again for the last year the figures are coming back around 0.009 and the last report this month was 0.015. I cannot escape the fact that the figures are gradually increasing. I have read on the home page that switching to Nilotinib improves molecular response in Imatinib treated patients with detectable BCR-Able after complete cytogentic response. (American Society of Haematology 12/18/2012). Also Brian Drucker recently said that Ponatinib is - "What they have been waiting for". I am very excited by the way research is still progressing.

Currently I am fairly well again, but recently have had Polymyalgia (on steroids) and more recently Pernicious Anaemia - am now on B.12 injections every 3 months and they have me jumping around again like a kangaroo. I have just been told my haemaglobin is too low.

I don't know too much about the drugs you mention so perhaps you could please give me any suggestions in case I can eventualy get a change over. I have made up my mind to keep up with the site again and to also go to the next annual conference. With best wishes to everyone who may read this and love to you. Pat

Hi Pat,
Oh the old days!! Havent we CMLers come a long long way on this journey. I am now on Nilotinib, and doing well. Please contact me direct if you want more of my personal experience. Not sure how you do that, but perhaps Sandy could sent you my email direct? Is that possible Sandy?

All the best 'old timer' from another oldie. I'm 12 years on from diagnsis now, not bad from a 6/9 month prognosis when the CML bomb dropped.

Pennie.

Pennie... yes, I have sent you and pat an email.
Sandy

Hi Pat... please send your current email address to me at cmlsupportgroup@gmail.com

Thanks,
Sandy