I'm hoping to move to the Brecon Beacons area in the early part of 2014 and wondered if any of you could share your experience of CML treatment at hospitals nearby or recommend a consultant. I've had CML for ten years and am doing well on imatinib with a pcr of 0.004. I've been seeing a haematology consultant at QE2 hospital in Welwyn, Herts with a partnership with Addenbrooke's when needed.
I'd be grateful for any help with this
Steve Broom
You are here
CML centres in South Wales
Hi Steve,
Dr Andrew Goringe is an expert CML clinician at Univ.Hospital Cardiff. He hosted the 2011 National UK CML Patient/carer day in Cardiff.
I think UHC would be an excellent choice, but others living in Wales might have other recommendations.
BTW:
Your PCR is very low and I assume you have had stable low level results like this for some time?
If so you might consider the upcoming DESTINY trial which is due to open as several UK centres. It is unique to the UK and if you have PCR results that are stable at MMR - 0.1% or lower or MR4-0.01 or lower, then you would likely be eligible. The trial is for all TKI therapy and will reduce the dose by half for 12 mths to see if MR is maintained at that level.....
(some expert clinicians feel that patients who have optimal responses to TKI therapy might be overtreated- ie. the dose might be unnecessarily high)
If MR is maintained then patients have the option to stop therapy altogether and see if they can maintain MR. If not they can resume therapy.
DESTINY is an alternative to the various STIM studies (stop imatinib)that have shown that at least 40% can achieve treatment free remission without therapy- TFR-
It is expected to open within the month.
Good luck with your move.
Sandy
Hi Steve - croeso! I live just outside Cardiff.
As Sandy suggests, there is a large haematology service in the Cardiff area, and DESTINY is going to be trialled here. I have nothing but praise for my consultant here, he has been a fantastic doctor over the past 7 years.
However - Cardiff's academic research strengths are NOT in CML, researching instead into AML and CLL. They are also not too keen to refer out of Wales in my experience. If you have been used to receiving shared care with a CML centre of excellence, then you might want to consider Charlie Craddock's team in Birmingham. I know that Powys, being a very rural county, and without a major hospital, has traditionally referred to Birmingham rather than Cardiff over time quite often, although how that works today I'm not so sure with the changing arrangements for the NHS.
All the very best, whatever you decide.
Janet
Hi Janet -and Diolch yn fawr.
Many thanks for responding to my posting, you've given me something to think about with the reference to the Birmingham team under Doctor Craddock, but the idea of getting on to the DESTINY trial and being able to reduce and then do without my daily dose of Glivec is appealing.
I'll talk to my haematologist here in Herts next week and go from there, but I hope to be back in the Land of my Fathers in late January so I hope the transition will go smoothly.
Many Thanks Steve
Hi Sandy,
Thanks for the information about UCH in Cardiff. I've had the same (or similar) low PCR for several years now so I was hoping to be considered for the DESTINY trial. I've had a response from Janet in Cardiff who also suggested the team in Birmingham under Dr Craddock, I don't know whether you have any thoughts about the relative merits of either place. I'm hoping to move by the end of January, do you think it might be worth contacting whoever I go to beforehand to register my interest in the DESTINY trial?
Many Thanks Steve
Hi Steve,
Yes I saw Janet's post regarding QE Birmingham, which is sound advice as they will also be a centre for DESTINY.
Just to confuse you, there is also Oxford and Dr. Adam Mead. I think in your case, as you do not need a change in therapy- i.e you are doing extremely well on imatinib- and all three centres will be involved in DESTINY trial, it is really your choice. Andrew Goringe, Adam Mead and Charlie Craddock are all members of the UK CML Working Group - which was why they have each hosted the CML Patient Days over the last few years- so although as Janet points out UHC 'specialise' in acute leukaemia, I think CML will be very high on their list of conditions for which they have expertise. Of course Oxford also specialise in Leukaemias and they all have pretty good labs (for PCR tests etc).
Maybe Cardiff would be easier to travel to... or maybe it would just as easy for you to travel to B/ham or Oxford. I am not sure of the transport links from where you will be based.
I have met all three doctors (been treated by Prof. Craddock when first diagnosed when he was still at Hammersmith) and they are all very impressive and patient friendly.
I think you might want to talk with your present consultant regarding registering for DESTINY. As you will need to attend a trial centre more often if you enrol, maybe it would be best to consider ease of travel as a priority? All the trial centres will be sending the samples to the central lab at HH- both Liverpool and Glasgow are the other trial testing labs - but HH lab is the central hub for this particular trial.
Hope this makes sense....
Sandy
Hi Steve, my husband has been receiving excellent treatment and support from Dr Chris Fegan of the University Hospital Cardiff (known locally as the Heath Hospital). We actually see him at another outlying hospital although he's based in the Heath.
The Heath was the first hospital to receive the Centre of Excellence Award from Leukaemia and Lymphoma Research and there is a whole team of researchers there. Speaking to them I know there are a number of top people based there committed to this work - gave us confidence at the beginning of this journey when we needed it most.
There is also an active branch of LLR in Cardiff which act as my support. Very kind people.
The Heath will be easy to get to - straight down the A470 from Brecon (about 50 minutes on a good road) and then into the Heath on the north/west side of Cardiff with good road links.
Good concert next Saturday in St David's Hall Cardiff in aid of Leukaemia Research - this will be about it's 45th year !
Best wishes
Theresa.
Hi Theresa, Thanks for responding to my posting. My haematologist consultant tells me that the procedure is that I have to register with a GP when I arrive in wales who will then refer me to a specialist, most probably in The Heath Hospital in Cardiff, so it's good to hear of your positive experience there.
I hope you have a good concert at St David's Hall
Best wishes Steve