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Newly diagnosed with CML

Hi
I'm MaryClaire and in the past two months I've been diagnosed with CML. I'm from Australia and have chosen to take part in a trial where I'm taking Nilotinib and in a month or so I'll also be self administering Peg-Interferon as well. My body is struggling with Nilotinib and my anxiety has skyrocketed. I'm anxious about introducing Peg-interferon when my journey already feels really difficult. As silly as it sounds, I wish someone could just take this away so that I can feel like myself again. So I can be the great mum I use to be to my 8 year old girl and the comforting energetic love of my partner. I've read a little about the journey of some people with CML and I'm scared of what lies ahead of me. I hope I can share my journey with others with CML and give and receive support.

Hi MaryClaire,
Just wanted to wish you luck with the Peg-Interferon, I'm not fond of needles and the self injecting would spin me out, but I guess people get used to it. I'd have to organise with the nurse at my GPs to give it to me. lol
On the plus side they are trialing this combination to see if this is a possible cure, I'll keep my fingers crossed that this is the result for you. I'd also like to thank you for being involved in the trial.

There is a FB site for Australians with CML that you might like to join, it's a "closed" site, so you just need to apply. https://www.facebook.com/#!/groups/656026574407935/?fref=ts

Not sure where you're from in Aus, but there are also 'get togethers' organised by the Leukemia Foundation. Brisbane and Perth definitely hold them.

Good luck with the trial and if it goes well there is definitely light at the end of the tunnel for you. I had a good response to Gleevec and have been off it (with doctor's approval) for over 10 months now.

Welcome, I am glad you found you way here via our Facebook page. Gerry has already suggested how you might find support in Australia either via facebook group or via the Leukemia Foundation- http://www.leukaemia.org.au/

If you are able to attend face to fact meetings such as the ones Gerry said are held in Brisbane or Perth I am sure you would find that helpful.

Nilotinib is a very potent drug and to add interferon to that seems like a pretty hard regime to tolerate. I understand why you might be worried.
I do hope you respond well enough to nilotinib that you might be able to reconsider whether you really need to add another potent drug to your daily routine. I do know of patients who are treated with peg-interferon as a maintenance therapy one they reached a molecular response to the TKI they were on. This is an easier protocol than taking 2 drugs at once.

If you can, why not speak with your doctor about how you are already struggling with the side effects of nilotinib. It might be that you could consider changing to another 2nd generation TKI that may have a better side effect profile for you. Depending on access in your region you might consider dasatinib (Sprycel)or bosutinib (Bosulif). I hope you find some answers and also some respite from your understandable anxiety about extra side effects.

Best wishes,
Sandy

I am not sure of the clinical trial you have signed up to- do you have details of it that you can share with us? Which centre is conducting this trial?