My husband has been treated here in north London by a team of haematologists/oncologists and last year participated in the Rialto Trial (Ofatumabub /bendamustin + - Idealisib ). He is now back on w & w with blood tests every 3 months after being told he is in partial remission. After reading all the posts on this site, I notice that many of you mention how important it is to consult and be treated by a doctor who specialises in cll. We are now wondering that when it is time for the next round of treatment to start, should we find a specialist in London/Home Counties , and if so, (1) would it be ethical to change doctors ?(2) where could we find that specialist ? (3) would we have more chance of getting access to the latest treatment than staying put ?
Hopefully, my husbands remission will last for years and not months, but because of his poor prognosis, we want to be well prepared and know that we've researched every avenue.
Thank you in advance for reading this and we would be so grateful for any advice that anyone can give.
Written by
TrishaG
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Macmillan Cancer Centre UCH London specialise in blood disorders including CLL and seem to be up to date in terms of new trials etc. I don't have an overview of London specialists but I think it is probably the best place. Not perfect but I think I can recommend!
Dr John Gribben at the London Clinic. He is part of the CLL Research Consortium.
020 7535 5503. I wish you all the best!
There will be a new cancer centre opening at Guy's hospital (this spring!?) in Bermondsey south London. 1 minute away from London Bridge train/tube station's.
The Royal Marsden has a number of CLL specialists, Dr. Claire Dearden comes to mind... there are probably only a dozen or so, true CLL specialists in the U.K.
There are many good and very knowledgable doctors don't get me wrong...
Thanks everyone. When the time comes, we'll ask our GP to request a transfer to the Royal Marsden as that is probably the nearest to us. Failing that, it will,be good to know that there are also other cll care centres as a backup.
Visit this link to the CLLSA web site and check the reference in the report to Dr. Samir Agrawal. What he was presenting felt very positive to me and, if I understood correctly, anybody can apply to join without the need for GP referral, the criteria are basically related to the state of your condition. I've got it tucked away in my mind, don't need it yet, but in time (?). I'm sure he said they had one client in Hong Kong!
By the way, as t states in the report, Dr. Agrawar handled the Q&A session and, boy, was their good information passing there - he knows what he's talking about.
I've just spotted this thread. I'm attending Kings College Hospital in South London for treatment. I noticed the reference above to the new Cancer Centre at Guys/St Thomas' Hospital. I went on their site and found this:
'We offer a specialist clinic for patients with chronic lymphatic leukaemia run by Professor Stephen Devereux from King's College Hospital, who is an international expert in this field.'
As I suspected, the three hospitals work closely together. This reassures me. Kings told me that they treat a large number of CLL patients from its local area and from far and wide.
So, if anyone wants a second opinion or to move to an expert treating them, these three hospitals are a good choice.
I am seeing Dr Saad Rassam at Blackheath Hospital. He is a CLL expert. I have Bupa insurance though but he does work at NHS hospitals too. Not sure which ones. Let us know who you end up going with. Good luck.
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