UK CLL Forum, UKCLLFORUM

CLL Specialist

Topic Made On: Jan 22, 2013 04:35pm
kestrel

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Hi,My name is Lee and I have CLL.I"m post chemotherapy !8,months on FCR via Basildon Hospital.I have had a recent CT scan for kidney stones and was informed that the scan showed that the lymph glands in my chest and stomach are enlarged.The haematology department has been informed.I was contacted by the haematology department to wait until my next haematology appointment next month?
I would like to know if anyone knows of a CLL specialist anywhere close to me at Grays Essex.
The problem is that I almost never see the same Haematologist twice!so therefore never build up a relationship with one to get the answers I would like.When I finished my chemotherapy they forgot for over two months to put me on antibiotics,and three months for antiviral tablets.I don't what the next step is going to be,but I do know I'd like a specialist to guide me.I welcome any info.




Replied On: Jan 23, 2013 08:50am
Zeno

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Hi Lee

Your plight is one the most frustrating aspects of medical attention, that is the inconsistency of seeing a familiar face each time for this disease. It does mean a breakdown in communication and a consistent view of medical on going treatment.

What to do? To give a little information on my own experience, I was diagnosed with CLL in 2001. I am treated at the UCLH McMillan Centre and have been for that period. In addition, I have been seen each clinic by the same consultant except on two occasions over that period. This has been fortunate and, if a Registrar has called my name, I politely say that I will only see me consultant. This has always been accepted. This is a patient right and choice (I also have a senior position in another London NHS hospital and a little bit familiar with the ropes!)

In your case, you have options. You can ask only to see the consultant in charge, assuming they do not change all the time. Or you can ask for a second opinion and choose your hospital. You are not that far from London - I live 40 odd miles away from the Centre. Therefore your choices are UCLH, Kings College (Joint cancer centres headed by Professor Lynch), St Bartís Ė Professor Gribben, and Chelsea & Westminster. The above Professors are at the top of their game with leukaemia.

In terms of the enlargements, you have the right to ask for an earlier appointment if you are concerned. If you are told by the appointment department to wait until clinic, this is worrying, they are not medically qualified to understand your concerns. Demand to speak to someone who will process you request without delay. Perhaps your GP can help you process this. Donít delay although internal organ enlargement is reasonably common with CLL. Having said that, I had no such issues even with my spleen.

Good luck and donít delay if you are worried





Replied On: Jan 23, 2013 11:44am
lesleyandrea

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Hi Lee
I can sympathise with your problem. I was first diagnosed with CLL four years ago and so far I'm only at Watch & Wait stage. Originally I used to go to a consultant at Ashford hospital who was extremely nice but I always felt it was a bit 'wham bam, thank you Mam' and within less that a few minutes I was out of the door. I was asked if I would participate in the CLEAR drugs trial last year and for this I had to go to Kings College Hospital and saw Dr Devereux who is heading up the trial and has a particular interest in CLL also as Zeno mentioned Kings is a centre of excellence for CLL. Previously I had also seen Dr Devereux's name on a list of specialist consultants for CLL. I asked if I could be transfered permanently to Dr Devereux and with a little bit of reluctance because of the protocols involved they have agreed. My thoughts are that when the time comes, which it will,for me to have some form of treatment I will be in the right place at the right time with people who are at the cutting edge of the medication available.

It is a pain travelling to South East London every three months and it is definitely a day out of my life for a 15 minute appointment as the parking at the hospital is so limited the only way is by public transport with fairly lengthy changes but my peace of mind out weighs that.

I so hope that everything goes well for you and I realise how lucky I am to be hanging on to this stage so far.




Replied On: Jan 23, 2013 12:15pm
Admin

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Posted on behalf of a member.

My dad has cll and we have this problem to, each time you go different consultant who says different things. Once they nearly infused him with wrong medication, it was only cause I was there and knew what he should be having that I told them. We are in the West Midlands area.

Robert



Replied On: Jan 23, 2013 12:15pm
Admin

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Posted on behalf of a member.

My dad has cll and we have this problem to, each time you go different consultant who says different things. Once they nearly infused him with wrong medication, it was only cause I was there and knew what he should be having that I told them. We are in the West Midlands area.

Robert



Replied On: Jan 23, 2013 04:47pm
Zeno

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Lesleyandrea

I am sure you know this, but for Kings College Hospital Ė Ashford to London Bridge, London Bridge (Platform 15/16) to Demark Hill, almost opposite Kings. From Tonbridge takes 1hour 20mins max with the right timing! A bit longer form Ashford I guess.



Replied On: Jan 23, 2013 05:00pm
sassy1261

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Hi Lee, if you have a look on the CCL Support forum they list all the specialists in the UK. Think I am right that the nearest to you is London or Cambridge. I also live in Essex and will be going to the Cambridge one if I need to. At the moment on watch and wait, but last test WBC went up by 50% and lymphocytes shot up. As I have not long had an op for endometrial cancer I am hoping they settle down again. If not, I'm off the Cambridge.



Replied On: Jan 25, 2013 06:19pm
kestrel

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Hi.I would like to say thank you to all of you that replied to my question.I have taken on board all that has been said,and I like to say how useful it was.I have implemented some of the suggestions and the first one was to make sure that my next appointment around three weeks time is with a consultant.Depending on how that go's will determine what my next step will be.At least now I have some options.Regards Lee



Replied On: Feb 05, 2014 05:03pm
Nicky73

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Hi
I too am looking for a specialist. I see from this strand to look in the forum for CCCL Support forum, but I can't find it on here!! Please help.
I'm looking for a CCL specialist either at Royal Berkshire, Reading, or John Radcliffe, Oxford.....should anyone be able to advise.
Thank you
Nicky



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