Dear all,
I am a 48 yr old English Mother of 4, DX may 24 this year. I am living in Florida and had been on the cml chat site over here....don't get me wrong I love American's but I was overjoyed to find you all, it feels like being home!!!
Donna Berry (nee Hawkins)
Surrey
I am under the care of MD Anderson but am seriously thinking about coming home, how is NH as far as CML goes?
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Hello Donna
I can only speak for my local heamatologist (Haywards Heath) and Kings College Hospital in London where I have been cared for. They are both first class - I was given Glivec as soon as it was available and it is now the first line treatment in the UK. I developed resistance to glivec and after a few tries at increasing the dose I had a matched unrelated mini transplant at Kings - after a few complications I am now 100% donor and pcru. I cannot praise Kings highly enough although there are other good centres (Hammersmith,Glasgow etc) I'm not sure where you would come back to but if it's Surrey then Kings is one of the teritiary care centres for the south east so get referred to there by a GP.
Happy to answer more questions if you have them.
Russ
ps my transplant was 3 years ago.
hi Donna,
glad you have found us and welcome to our forum.
the NHS fully funds Glivec as first line therapy for ph+ CML so if you decide to come back to the UK then you should have no problem getting access to Glivec. as you can see from David's post above both Dasatinib-Sprycel- and Nilotinib-Tasigna- are now very likely to be selected as topics for NICE appraisal.
although we are not sure yet of exactly when the appraisal will be, we are hopeful that it will be soon.
the message from NICE (national institute of health and clinical excellence) is very positive at this stage and we are hoping is a good indicator that both the newer drugs will be available and fully funded by the NHS for Glivec resistant/intolerant patients at some point next year.
as Russ says in his post above, there are several centres of excellence for CML here in the UK. Kings or Hammersmith would probably be the most relevant to you should you move back to the south.
very best wishes,
Sandy
