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Please share your views on the following 2 Questions

New clinical trials:

  • CML doctors in the UK are currently looking at designing new trials for patients with newly diagnosed CML. Although this may not affect you, they have asked CMLSg to ask for your view on how you would feel if you were doing well and had achieved a stable optimal response you were then asked to switch from a 2nd or 3rd generation TKI, such as nilotinib or ponatinib, to the 1st generation imatinib. Would this be acceptable or would you be concerned about losing your response and/or developing different side effects?

 

 2016 UK CML Patient/Carer Conference on 24th September. 

  • Do you have a specific topics that you would wish to be covered at the meeting?
  • The organisers would also like to feature 2 patient journeys, would you be willing to volunteer to tell your story?

Hi Sandy

Regarding your trial question, although I am now 3 year post diagnosis and have been on all TKI's except Ponatinib, I will add my thoughts. Personally if I had a good response and was not having severe adverse effects I would of been reluctant to switch back or forth to either 1st Gen or 2nd Gen. Therefore, for me it would of been a no if I was asked by Consultants to switch from for example Tasigna to Glivec.

Regarding the CML day, I would be willing to volunteer a story for sure, however as my story hasn't been too positive regarding my journey with adverse effects, maybe this would preclude me from the event?

Kind regards,
John

Hi Sandy. An interesting question. I can’t really answer as on Imatinib already, however I guess if I were on a different TKI that was working I would not be keen to change. “ If it isn’t broke why fix it “ as they say. However, if it meant trying Imatinib my side effect may reduce on this TKI as they may be a different profile, and I was guaranteed the ability to swap back then maybe. I may be conscious of Nilotinib and heart issues as the years pass and likewise Dastatinib Plural effusion etc.  Given Imatinib is going generic, this may well also effect the way many think as well, as they will be coming off a branded TKI, albeit it should make no difference…..

The idea I guess is to get all TKI’s approved on the basis it can be “sold” to NICE –NHS as a cost saving perhaps by hitting hard first with a “stronger “ TKI then moving onto the cheaper option ? My gut feeling is most will stay with what they know if they are stable and are able to.

Can't make conference this year as on holiday, but would highly recommend to anyone to attend.

 

Hi Sandy

I can't really add anything to what Nigel says, as I am content to be doing well on imatinib and at the moment see no reason to change.  

I don't think I will be able to get to the conference, either, but will look out for the report after the event.

Thanks for all your hard work

Olivia

If I was on a drug that worked and that suited me I'd fight tooth and nail to stay on it.

It would be totally unacceptable in my opinion to even think of changing it.

Hi Sandy

Yes, like Nigel and Olivia I have always been on Imatinib so it's a hard one to answer. I also would be keen to stay on a TKI with the least serious side effects so if I had heart issues or lung issues on Nilotinib or Dasatinib I would probably be OK about changing to Imatinib. However, if I had no serious side effects and had attained at least MMR I would prefer to stay on the tried and tested ( for me) drug. A devil you know etc.

Best

Chrissie

Hi Sandy & John -

My opinion is that not every story has to be a "happy" one. Some of the most powerful stories I've heard are those that have been through a tough time. Though it's nice to celebrate success we must also recognise adversity.

I'm always happy to yack on about my past, you've all seen enough of me either here or in the CML Faces book. So whilst I am happy to do patient story pieces, I think there are more varied stories to be told.

I was out with a friend for lunch yesterday who is an AML patient who has gone through the full-blast allo transplant. There is much to be learned from leukaemia patients outside the CML group.

David.

Thanks to all for your responses.... I will send them on to Prof. Copeland and will let you have her feedback regarding candidates for 'Patient Stories'.

Any other volunteers?

Sandy

Hi Sandy and David.

Thanks for that. As I say I am more than willing to speak if I am wanted, just let me know.

Take care all.

Kind regards,
John

Hi,

in a similar vein to other responses, once you're settled on a treatment that's working and the side effects are tolerable/manageable, why would you change TKIs?

i would only change TKI for medical necessity. 

 

C

 

 

Me too - you would be very lucky to have zero problems with a particular TKI, so sometime's better the devil you know!

David.