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Mutation and increased PCR

So after my last post to the forum back in October saying that after nearly 4 years of hitting MMR, I got some bad news as my PCR had jumped up from 0.045 to 0.125 and they had found a mutation in the CML for the first time.

Before xmas I visited the Hammersmith to discuss the implications and next steps.  As my local PCT (Reading) do my prescriptions I am waiting the outcomes of discussions between the 2 as to what they will fund as there are 2 options for me either an increase in Gleevec to 600mg a day or moving to Dastanib or Nilotinib.  So I am just waiting to hear from them but I know these things can take a while to sort out.

Rob

Rob

Sorry to hear that the CML is not behaving itself properly.  PCR blips like this do happen - it seems that it is not even a 10-fold increase in the PCR so I'm impressed that the Hammersmith have gone on to do mutation testing and identify the mutation.  Frustrating  that money issues may impact upon your treatment options.  Which mutation did they identify?  Please let us know in due course how the PCT resolves this with Hammersmith - hope things work out.  Best wishes.

Hi Annie  - to be honest I didn't write it down but was told it was one of the mutations that can be fixed with Dasatinib or Nilotinib.

I think the preference is to go to oneof these Vs increased Imatinib.

Will let everyone know how I get on, go back to Hammersmith next Thursday (20th) 

Feel very fit and well so was a little shocked to get the news.  But just take it all in my stride and just get on with living rather than worrying about it too much.  Just the way i cope

 

Rob

Dear Rob, sorry you have this worry at the moment but I am sure that HH will be able to offer you the better option. Given that they have identified a specific mutation that can be effectively dealt with the either of the available 2nd generation TKI's then I think you can be confident that all will be well. Your pcr is still low so you can be assured that they are well ahead in dealing with the potential problems that an imatinib resistant mutation can cause. 

I know about the feeling of shock you describe as I too experienced the same thing... a good response to imatinib for over 3 years which translated into low levels of bcr/abl for some time.... then the shock of an imatinib resistant mutation at a time when neither dasatinib nor nilotinib were available (not even through clinical trial). 

So you are at a good time in the history of CML and can be confident that you will respond well to either of the new drugs. I am sure HH will be able to do a 'deal'  with your PCT.

You're right to try to take this in your stride.... all will be well.

Sandy

Hi Rob, sorry to hear of the problems you are having at the moment. I hope they get you sorted out very soon. I have had all three TKI's now (having become intolerant over these last 3 years). I too am at the Hammersmith on the 20th to collect a very new drub Bosotinib (previously trialed at the Hammersmith) and wonder if we could have a coffee & chat? My appointment is 10.30.

I can find very little information about Bosotinib, so if there is anyone on this forum who has experienced this I would be very grateful to hear from you.

Rob, wishing you the best.

Ali

Hi Ali - more than happy to meet, my appoitment is at 11

 

email me robmar@microsoft.com and we can work out details of how to meet

 

rob

Hi Sandy - thanks for the response and the reassuring words :)

I feel in good hands with all the Drs and nurses that I have dealt with at both HH and local hospital but have some insights into how slow sometimes the NHS can be

cheers

Rob

Ali - BTW The drug is called Bosutinib with a u , search with that and you get plenty of info

 

rob

Dear Ali,

please see home page for summary and link to article using data from the BELA trial of bosutinib.

Sandy

Hi Rob, I am just wondering how you got on at HH last week? It would be good to know what the next course may be for you and I do hope all went well? I hope funding doesn't become a problem. I am sorry we didn't catch up, I think I saw you as you came in but then I got called in & you were gone as well!

ALB

Ali

Hi Ali - all ok really been on Dasatanib since Thursday had some reactions to it but slowly improving.

Sorry we missed each other, i think I heard you being called, but then I got the call to give some blood and by the time i was finished you had gone.  Hope all is well withe you and your trip was succesful.

 

Rob