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New Path to Take

Hi Everyone. Again, I am writing this post in the hope I can get some more good advice...

I've been munching Gleevec for 15 months now (400mg for 6 mths and 600mg for the rest) and it doesn't seem to be working as it was designed. My PCR has moved down slowly (I've been dubbed "The Turtle") and now is currently sitting at 2.6%. The last 3 PCR results haven't shown it to move too much. I am now being told I should start taking Nilotinib...this should be happening in a months time. This has been preferred to another dose increase to 800mg or Desatinib.

I've read as much as I can about Nilotinib but I guess the info I'm after is from people who are actually taking it. What should I expect? Also, I've read that it's fine to conceive whilst on Gleevec...is it the same as Nilotinib?

Hope someone can shed some more light on this for me...

Cheers, MJS

Hi Matt

Can't help you with the questions about nilotinib but I would like to know where you are getting it from. I was given to understand that the only 2 trial centres that were open are Dublin and Leeds. I am probably going to try it myself at some point in the next couple of months.
I am in London so would hope to be able to get it somewhere nearer to home.

regards
Susan
dx Mar 05
tried glivec and BMS
very low PCR but can't take the bloody pills due to side effects. Now feeling wonderful after being off medication for 8 weeks!

Hi Matt,

Nilotinib is really a modification of Gleevec and supposedly about 30 times stronger....whereas Sprycel is supposed to be 300 times stronger. I am a patient of Dr. Druker's.....he kind of indicated to me that someone who was just less senstive to Gleevec (you sound like you have primary resistance and never a relapse) might do better on Sprycel than AMN107. This is because Sprycel is dealing with 2 pathways and is more potent. Of course, data is just being compiled and opinions vary.

You can find folks on AMN107 on Jerry's website.........
www.newcmldrug.com
left hand, click on AMN107 TALK
maybe you will get some useful information there.
Best to you,
Nancy C.

hi matt, good luck with your new therapy. i have heard extremely good things about nilotinib (tasigna) and understand that the phase ll trial data will be published soon. there are not many chronic phase patients who are taking nilotinib in UK as yet and none to my knowledge that post to this forum. however all this will be remedied as the ENACT trials open at more centres in the UK.

i am sending you an email contact of a friend and cml colleague in germany who has just had a lovely baby girl. i am sure he will be willing to advise you on living with CML and fatherhood. there is NO evidence that glivec (and therefore nilotinib) affects the sperm. the only caution is for women taking glivec within the first trimester.

best to you,
sandy

sandy C ;o)

hi matt, good luck with your new drug. it also targets the same protein as glivec (ABL) but is much more efficient.
i have heard extremely good things about nilotinib (tasigna) and understand that the phase ll trial data will be published soon. there are not many chronic phase patients who are taking nilotinib in UK as yet and none to my knowledge that post to this forum. however all this will be remedied as the ENACT trials open at more centres in the UK.

if you let me know you current email address i will send you an email contact of a friend and cml colleague in germany who has just had a lovely baby girl. i am sure he will be able to advise you on having CML and fatherhood. there is NO evidence that glivec (and therefore nilotinib) affects the sperm. the only caution is for women taking glivec within the first trimester.

best to you,
sandy

sandy C ;o)

Dear Matt,
my Dr here in France, thinks that Nilotinib is better than Dasatinib, there are certainly less side effects (almost none) with his patients taking it,
Good luck,
Barbara

Thanks for the comments...

I will keep you posted on when I start the new meds (Nilotinib)and how they are going for me.

Sandy - best email is mattsinclair2003@yahoo.com.au - thanks!

Take care, MJS

Hi Matt

Sorry to hear that Glivec didn't work out and hope that things go much better on the Nilotinib.

Cheers mate

Adam H