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Two years into treatment and needing advice

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I am now nearing two years since diagnosis and although I feel well my consultant is disappointed with my results and pushing me to change to Dasatinib which would be my third TKI 

My brief history:

19/12/2016 - started treatment with Imatinib 

23/7/2017 change to Nilotinib 300mg bd following resistance to Imatinib and BCR-ABL only reducing to 14.9

23/04/2018 increase Nilotinib to 400mg bd as BCR-ABL only reduced to 0.37

There has only been minimal reduction in my monthly tests since the increase in dose and my BCR-ABL level is currently 0.17

For several months my consultant has suggested a change in TKI and this would have happened yesterday, but I was unable to have a ECG as my clinic had run late. The delay has given me an opportunity to consider the options and I would really welcome any advice or sharing your own experiences. I have tolerated Nilotinib very well and feel very anxious about changing (Imatinib was more difficult to tolerate - in particular it effected my eyes which were swollen, weeping and sore). I also have Atrial Fibrillation which is obviously a consideration and take medication to control my irregular heart beat and also to thin my blood.

I am now due to change medication next Monday - I have already signed the consent form and ultimately know that I will move to Dasatinib, but feel very anxious about dealing with any potential issues over the Christmas period. I have requested to start on a lower dose of Dasatinib, but my consultant feels this would not be the best treatment and I should start at 100 mg. 

I would value any support or advice to help me make my decision.

Many thanks to you all

Daphne

Daphne,

It is good for you to switch off nilotinib given your atrial fibrillation history. Switching to dasatinib will have less of an effect in that regard. And I strongly agree with you on starting at a lower dose dasatinib (50 mg) given your current PCR level (which is "o.k."). You can always increase dasatinib, but there is a good chance you will either maintain your response or have a deeper remission. Dasatnib at 50 mg has far fewer side effects (especially in regard to atrial fibrillation and may actually be more effective than 100 mg.

Consider adding magnesium (magnesium taurate) to your regimen at 500 mg per day split in two doses evening before bed and first thing in the morning. It will smooth our your heart rhythm as well as other muscle aches (leg cramps).

And make sure you are taking vitamin D3 !

 

Daphne,  I also agree with starting on lower dose of dasatinib.  When I was taking 100mg/day, it made my heart skip a beat sometimes and I didn't like it at all.

Your PCR scores have be going in the right direction.  Hopefully the change in meds will continue that trend!

Kirk