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Hi,
I wonder if you guys can help me. I have been searching the internet the last few days for information on a hospital within the UK that is widely regarded as a successful centre for treating Myeloma, but unfortunately all I have come across is recommendations in the USA. I live in the West Yorkshire area however travelling isn't an issue providing it is somewhere that is highly recommended and with the highest possible treatment success rate.
Any information you guys could provide would be invaluable.
Thankyou
Regards
Alastair
Hello alastair
I am under DR kwee Yong at UCH lONDON she is a recognised expert in the field of Myeloma you could try there if you are able to travel they have a very good team in the care of Myeloma
Regards Jo
Hi Alastair, how are you?
Have you just been diagnosed with MM? If so, then you'll have loads of questions flying round your head.
You may have already read through the posts here on the forum, in which case you'll see varying stories both about illness, side effects, treatment and ofcourse we're all in different areas/hospitals too. Its difficult to pinpoint a specific treatment area or hospital, if there was somewhere with a huge success rate then we'd all be moving house to be close to it. The truth is that everyones body reacts differently to treatment paths so its more a "suck it and see" type of illness.
I'm sorry I can't be more specific. All I can say is that my husband achieved remission for 3 1/2 years after taking CTD, we live in Stirling, Scotland. I have read reports of people who have had CTD followed by a SCT who haven't had such a long remission – so its very much an individual illness – it reacts differently body to body. His MM has now returned and he was put on Velcade (again by the same hospital team), however the Velcade caused an adverse reaction so it has been stopped. Velcade in others has been very successful … so again, its not so much about the hospital teams/care given but more how your body deals with the illness and all the drugs thrown at it.
I have also read about various treatments, the trials for instance that we have had no access too however I think down South there are hospitals that promote trials. John also has Amyloidosis so we fly to London every six months to the Royal Free for scans as there is only one scanner of its type in the country. I don't think its a case of "postcode lottery" with Myeloma, I think it depends more on how your own body copes.
Apologies again if I'm not quite answering your query, its not quite so cut and dry as it first appears.
Sending healing thoughts and love
Angelina xx
Hi Alastair,
I cannot speak for other hospitals and centres as I have limited experience… but what an experience, in my case Nottingham.
The City Hospital complex has a purpose built Haematology Unit with an excellent Day Case Centre and two floors of specialist wards above the shop. It is part of a teaching hospital with direct links to the Queen's Medical Centre a couple of miles away along the bypass and all the departments seem to link, learn and share both experiences and facilities… which are state of the art and second to none.
Our consultants are leaders in research and development and there are always many trials in existence… which certainly helps if your individual case is backed into a corner.
There may well be others just as good.. I certainly hope so. 🙂
Dai.
Hi Alastair
Well I can tell you its not in South East Kent,Read my previous post it will give the general idea.
If we could manage London I think we would go for that,health wise not advisable for my husband.
Its not so much about the treatment,I think its roughly the same.Myeloma X1 trials are you best hope,if you have not started treatment.
Dai specialist wards!!!! I was told the other day,canterbury has 1 ward between 700,thousand patients with cancer,use to have 2 but instigated chairs for treatment ,fit more in.but you do not realise this till things go wrong they told me septic pneumonia is not directly related to the mm,thats why after itu we had to go on a general ward,>:-(
I think the problem is it is such a complicated cancer,it is not just about cancer,its the related conditions,they work on the bloods,but its the bones that cause the pain,I think if Slim had been in a Specialised hospital his problems,would have been picked up,
Alastair I would say choose your hospital with care,best of luck eve
Thankyou for all your comments, they are hugely appreciated.
Badger, thankyou for the name, we are already in the process of drafting an initial email to Dr. Kwee Yong on the back of your advice, with a view to getting a 2nd opinion and on the best course of treatment.
Angelina, It's actually for my Dad who in the last 4 weeks has been through the shock of discovering this on the back of just a routine trip to the GP for a pain he had in his leg. The initial anger has turned into hope with a view to getting the best possible treatment going. My Mom has been doing some reading from a lady in America who suffers from Myeloma and has made it her personal goal since being diagnosed to find the best treatments possible. On the back of reading some of her information we have gathered the names of highly recommended trial treatments so we will at least have some counter questions to the ones that are initially offered.
Dai, thankyou for that, it's another hospital we will be looking into, along with the Newcastle Freeman Hospital which has also been recommended to us.
eve, that's a mistake we don't want to make up here, for something like this, at this stage of diagnosis, we want to use the time we have been given at this side of the treatment to find the absolute best place because no doubt at some stage, health will restrict where my Dad will be able to travel to.
Just also want to say I hope for all those who are suffering or are closely related to someone with Myeloma the absolute best, you never think you are going to be in such close proximity to such an awful disease but when you are, it quickly brings everything else into perspective.
Regards
Alastair
Hi Alistair
I can recommend the Freeman in Newcastle as it has a new purpose built cancer department and two wards and a day ward not to mention lots of absolutely wonderful and understanding staff. A hospital is only as good as the staff who run in and the commitment of the team in Haematology is amazing. We have met some lovely patients too who have had great results.
Warning….. surfing the net and American ones in particular is not helpful. They pay for what they get and can dictate how they are going to be treated and where. Similarly many many american people have no insurance and cannot afford the treatment they need.
Not quite the same here as, if for instance Velcade was the chosen option, traveling to a clinic twice a week some distance is,……. when not feeling too good is not the best option.
Drugs Trialed in America often haven't been approved here in the UK so it is a whole different ball game. The myeloma XI trial here is the current situation, otherwise 1st line treatment is CDT which allows the options of all the other layers of drugs to follow on to if needed.
Watch the videos on this site from Professor Jackson and make your mind up when you have all the facts.
Good luck in your search.
Min
This is a very difficult question to answer, if you look at the research papers some of the people at the fore front are in the London hospitals but that is not to negate some of the wonderful experiences that Dai and others have had in regional hospitals.
Prof Schey ( pronounced Sky) is Chair of UKMyloma Foundation, works at Kings. My husband has been treated by him and his team and we cannot fault them
Dr Gareth Morgan at the Royal Marsden in Surrey is also considered to be at the cutting edge of work on Myeloma and has a great team at this specialist hospital, I know some people on this forum are treated there.
You have already been told about Dr Kwee Yong at UCH. You might have a look at some of the research and see who is doing it, if you can stomach it.
We live in West Kent and my husband has had excellent treatment between our local hospital and King College Hospital. I know it is a very personal thing and I hope my comments have helped a little. I wish you good luck as you continue on your journey,
with love,
Mari
Hi.
I'm at the royal Marsden in Surrey and can't fault it. The only thing I would mention is distance. I travel a 90 minute journey to my hosp and it can be tiring. It's not so bad when you're only going once or twice a month but I come in twice a week now. I'm doing ok on the treatment so drive myself and find it manageable but if my side effects got worse it would be hard.
Just something to bear in mind…..
Debs
Just to add that Dr Schey also works at the London Bridge Hospital. He covers private patients there in case that is the way you want to go. I fully agree with Mari – he certainly knows what he is doing.
Good luck. It is a real shock to find that you have this disease, but it is treatable, although cannot be cured, as yet.
Scott
H i Alistair I am also under Dr Yongs team at UCH London and they are excellent Not only is Dr Yong good but the whole team are and they have regular meetings to discuss treatment plans , bringing in other professionals when needed , for example an orthopaedic surgeon to suggest a way to ease my back pain The hospital itself is very new and spotlessNext spring a brand new cancer centre is opening , all treatments ,scans, x-rays etc all under one roof It will also have a PET scanner , which will be the first in a uk nhs hospital Good luck with whatever you decide Bridget
Minnie tell Peter that I'm so sorry that things have turned out this way for him.
He was always my favourite brother and I will always love him deeply….
Andrew
Hi alister
my husband has had 2 sct transplants at Kings College hospital in london, not to keen on the trasplant unit but much better than the 1st time round in 2002. Ge is/was under Dr Schey and he is also under our local hospital on the south coast which is a god send!!
Godd luck and hope you make the choice to suit yuo all, I would advise you keep off the american web sites, they send me stir crazy!!
sarah xx
Hi Alistair
Like Dai, I also go to Nottingham City Hospital Centre for Haematology and have had nothing but a positive experience, supportive nurses who return calls usually within 24 hours and have time to answer even the most awkward or 'silly' questions at clinic or over the phone, prompt response to strange side effects and concern
I've not met the Prof, but both consultants seem to really know their stuff, in particular Dr Cathy Williams who, from what I've read, has done a lot of work in this area, both in the UK and USA.
Best of luck
Jet
Hi Angie
Stumbled onto your message. We live in Dunblane and my husbnad Ian has been diagnosed with MM on 24 October. He had to have a spinal operation as his spine started to crumble when the steroids started attacking the tumour. He has had to return for further surgery to the Western General in Edinburgh as his wound is infected. He is slowly healing but he is immobile at the moment. Ian started a course of CDT but the side effects were awful. He is now on Velcade but this has been delayed to let his wound heal.
The plan is for Ian to be transferred back to Forth Valley hospital and restart his chemo and then go to Falkirk Royal for physio and rehabilitation.
I would appreciated any information you can give me regarding your husband's treatment.
Maureen
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