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Unfortunately it looks like the Nilotinib medication is not working very well.

I have had my latest test results back and these shown my PCR results as 1.0% up from 0.7% in October 2013which were up from 0.6% two months earlier. I am having another blood test in 4 weeks time to see if the trend continues and if it does it will be a mutation test and then a different type of medication. The results are the IS scale.

Does anybody know how the mutation test works and how long the results take to come back.

Its a bit worrying at the moment and very disappointing as the current medication agrees with me much better then Glivec which I was on first.

To clarify for anyone that doesn't know I began treatment on Glivec and had to change to Nilotinib because the PCR results stopped and began to rise slowly.

I'm worried because its now happened again and again it looks like I may have to change medication.

Neil

Hi Neil
You must be very worried at the moment but the good news is there are other drugs out there that will hopefully work well for you.
The mutations test should not take too long - if I remember correctly mine were ready at my next appt (so within a month). I have never really responded well to the drugs and I am now on number 5 but so far so good - the counts are not too bad.
Try not to worry too much and also don't be scared of trying another new drug.
Karen

Unfortunately I am a bit of a panicker, I still can't quite get over the fact that I got the illness in the first place after being a fit healthy person. Did you have the mutation test done whilst still taking the current meds and then change when the results came back?

I had a mutation test done - didn't take long, just a couple of weeks in my case but I guess this is pretty variable.

I know what you mean about worrying. I am on a steady increase at the moment as well ... I've had ups, and downs, and ups and downs, but the overall trend is down if you look over a long enough period of time so I suppose that's good.

I'm at around the same level as you - hovering up and down at the 1% area. I'm on dasatinib these days.

Hello again.

per my last post, I think a mutation test is very sensible. This will likely be done as part of normal blood work i.e. alongside your PCR test - you'll just give 6 vials of blood instead of 3-4. You don't need to come off TKIs to do a mutation test.

I'm sorry the nilotinib doesn't seem to be doing the trick. However, nilotinib and imatinib are from the same family and my previous oncologist held the opinion they "aren't different enough" in some circumstances.

Unless the mutation test shows something which would dictate a specific TKI, then Sprycel (dasatinib) would be the next logical step. This drug is different to nilotinib and targets a different pathway which nilotinib does not. The medication is available through the cancer drugs fund and you are probably meeting the criteria for it to be prescribed.

If you are interested, have a look at the slides from the patient seminar in Nov 13. Look at slide 6 on this presentation:

http://www.mpdmeetings.org/media/12572/apperley-oxford.pdf (from what i recall, anything other than red is a good thing and green is best)

What this shows is that out of all the known mutations, doctors now have an 'arsenal' of TKIs which will work across the range of mutations. The holy grail has been tackling T315i - Pontinib has shown to work against this mutation and is available in exceptional circumstances i.e. failing the others. (maybe Sandy or others from the patient day can add to my overly simple explanation)

I know it's a panic and the next 4 weeks will feel like a lifetime; but there are options readily available and I am aware of several instances where imatinib and nilotinib did not work for people but sprycel does.

Let us know how it goes and i'll keep my fingers crossed for you.

Chris

Hi Neil, please try not to panic (I know it's easy to say and hard not to). Everyone has given you very good advice- and remember, a lot of us have been in the same place as you are now.
From the PCR results you show, it looks as though nilotinib is till doing something as the change in percentages are not very large. This shows you have 'responsive' disease and depending on your mutation test result you will find one of the other available TKIs will work for you.
If you do have a mutation the way forward will become clear. I had an imatinib resistant mutation (Y253H) and had nilotinib and dasatinib been available at that time the choice between the two would have been dasatinib as it is more effective in dealing with that particular mutation. Now there are 5 TKIs available so you are in a good place given that you have CML. I still struggle with the fact that I developed CML and I am 15 years down the line, so you are not alone.

The upside is that you have responsive disease and the present position is that either dasatinib or bosutinib will be available for you and both are as effective as nilotinib and each other.

Sandy

I had the test done as i don't respond well to the TKI's but the good news is i have no mutations, the bad news is I still don't respond that well to TKI's!!! Changing is always the worst bit as you have to get used to the new side effects that the drugs bring but once you get over the initial hurdle, you will be fine.
K

Does anyone know if the dosage of Nilotinib can be increased and whether this would have any effect on the PCR?

Just thinking out loud, also what would happen if patients were to return back to a previous TKI drug, would it still be effective or would the mutation have changed to make it uneffective or does it mutate each time a different TKI is used?

So basically does the mutation change and you only have one each time you change TKI?

If that's the case then a change back to a different TKI may begin to work again.

Just another thought, when would a plasma test be done to see if the dosage of Nilotinib in there is high enough and can the dose be increased?