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Scotland to England move

I currently live in Scotland, where I’ve been on Dasatinib for the last 4 years or so, but am planning to relocate to West Dorset. As the time draws closer I’m getting worried about whether I will be easily able to continue on Dasatinib once out of Scotland, and also where will I go for my care. Does anyone have any advice for me on this? Am I mad to be contemplating such a move?! Sometimes I wonder…

I had also been hoping to try giving up Dasatinib, as I’ve been PCR undetectable/v. low for the last few years, and although my consultant in Scotland was willing to try this outside of a clinical trial (as I understand the relevant trial has failed to get funding in the UK), he advised against it with a move to England imminent. For if I needed to go back on, then I might not be able to go back on Dasatinib so easily out of Scotland. I’m intolerant to Imatinib but haven’t tried anything else. I realise that this is a minor issue but wondered whether this might be possible to try later, and if so, would I need to be under care of somewhere like Hammersmith? Would be very grateful if anyone has any thoughts on the above.

If/when I move, I’d also be keen to get involved with a SW group if one has started.

Thanks

Sarah

Hi Sarah,

if you do take the plunge to move to England then you will continue to receive dasatinib through the NHS as you are already treated with this TKI. If you were asking to move to dasatinib therapy from one of the other TKIs then you could still get approval through the Cancer Drug Fund (as far as I can find out, currently 9 out of the 10 regions have agreed to fund dasatinib through the CDF- the one that has not agreed is in the North East but it is hoped that they will eventually respond to pressure!)
But this is not relevant in your case and you should have no problem continuing therapy with dasatinib.
If you want to try stopping- then you should do so within a study. There will be a study at the Hammersmith (not sure of dates etc. but they did agree to update us here on their plans for clinical trials and studies).

At the patient group meeting at HH last Saturday, Dr.Dragana Milojkovic did mention that they are planning a stop study the is slightly different, i.e therapy is gradually reduced over time rather than stopped altogether.

Given the above - I would advise that you try to get a referral to Hammersmith. Hope this is helpful-

Sandy

Thanks for your advice Sandy - much appreciated. I will endeavour to get a referral to the Hammersmith somehow, and hope that I can get on some sort of trial sometime.

It's a relief to know that I won't be taken off Dasatinib because of NICE or cost. Assume I will be attending my closest hospital down in Dorset/Devon initially or is there anywhere that anyone recommends? I suppose I've been lucky so far to be near tertiary centres, so I do worry when I read some of the postings and see a lack of knowledge/understanding about CML in some district hospital settings.

Sarah