[PerkymiteParticipant]

An interesting post well worth a discussion I must say.

I go to my local hospital the specially built cancer centre at Musgrove Park Hospital, Taunton Somerset called the Beacon Centre. I am very, very pleased with my treatment and the staff could not be better, so of course I would recommend them.

However, unless you are going private I would suggest that all English NHS hospitals? basically follow a proscribed pathway, you might have heard of the Liverpool Pathway for the terminally ill, that has been in the news lately. There is also a pathway that lays out the treatment for a Myeloma Patent and I had a copy of it in 2009, when I was diagnosed, but changes of computer mean I cannot find it now. How you proceed down the ?Myeloma? pathway is dictated by the patients symptoms and how Myeloma presents itself, could be bone pain to kidney failure. There will also be some difference in patient?s treatment depending on their personal health, fitness and age but again this would be the same in any English NHS hospital you went to. Myeloma is an individual decease and overall survival rates for each hospital would possibly be the only way to tell one from another. I will be interested in your findings and the data to support them if you would like to share them with us.

When I first started on this site, 2009, I used to say to newcomers do not bother looking for the magic bullet on the Net because there isn?t one. If there was, rest assured, I would have been first in the queue. I did not do that to frustrate, deflate them or be negative but I believe there is more self destruction from believing some hype only to discover after you eaten a ton of Cumin, drunk 20 gallons of red wine and eaten Asdas stock of cucumbers (all of which have been "the latest thing" during the last 3 years) to find it does not work!

I wish your father well.

Kindest regards ? vasbyte

David

[FOXLEYParticipant]

Hi Alastair,
I have no information on which to recommend one clinic above another. I do know for certain however that you will be making many, many, many hospital visits so please do not underestimate the travelling. Both patient and carer are bound to be tired and emotional at times into the bargain and that will contribute to making travel even harder.
I also agree with the person who said that treatment (first stage at least) is pretty well standardised across the NHS.
For what it is worth I have been under Dr Watt for haematology at the University Hospital of South Manchester and for SCT under Dr Cavet at The Christie (specialist cancer hospital in Manchester). I have nothing but praise for both centres.
Good luck,
Chris

[MishaParticipant]

My husband has just been diagnosed with MM, currently we live in France and although the treatment here is first class inevitably language becomes and issue. We intend to return to the Uk and have the luxury of being able to move anywhere in the Uk, apart from London …too expensive. My question is recommendations please , outside of London and major cities where with your experience can you recommend? We had wondered about Devon, I believe Exeter has a unit there but can find no information on patients views on level of care and progressive initiatives.

We would welcome any information please, it is enormously difficult coping with such a condition in a foreign country and will look forward to a support network in our own language.

Many thanks for any replies.

Kathy

[tonyfParticipant]

I live in a small village in Leicestershire. Was diagnosed in March 2012 and have been treated at the Leicester Royal Infirmary. The treatment put me onto the myeloma XI drug trial and eventually a stem cell transplant. I have found everyone polite, professional, caring and very positive. I cannot fault the way that they work, I had a dedicated male nurse who could be contacted at any time.
For your interest I am 6 months post transplant, I am off all treatment except for a monthly penidronate infusion, no drugs, and appointments every 2 months with the haematology dept.
Best of luck with your move.
Regards
Tony F

[StuartParticipant]

Hi Kathy, welcome to the club! My wife Julia was diagnosed with MM in Nimes in 2008, and although by anyone's standard she speaks French fluently she still found it difficult being a patient and trying to explain her symptoms and how she felt. It was the small nuances of language that make all the difference. We also felt that the "approach" or attitude of French doctors to be less than patient friendly and so we set about finding an English hospital where she could continue to be treated. Since December 2008 she has been extremely well cared for by the Royal Marsden in Sutton and we couldn't speak highly enough of them. We didn't sell the house in the south to move to England, but moved further north (Burgundy)from where we make regular trips back.
Please contact me if you want further details.
Best Wishes
Stuart

[Anonymous]

Welcome to the forum.
I live in a place called Yarlington, Nr Wincanton, Somerset and am being treated in Yeovil hospital, Somerset, which has a very good oncology department. Chemo and Bisphosphonates ( for bone pain) are given there, but if you have to have radiotherapy that would be done in either Taunton or Bristol about an hour away, depending on where you live.. There are some lovely little villages near Taunton, and you could get all your treatment done there. I have had to go to Taunton about 4-5 times now, and I find them very helpful.
In a few months time I will have to have my SCT , I think I will have to go to Taunton for this, although I will know more in August when I see my consultant.
I was diagnosed in February this year, my pp level was 34.4 and is now only 4, I have managed to get it down to this level without Chemo and only taking Thalidomide and Sterioids.
Hope you find a suitable place very soon, all the very best to both of you, take care.
Ann
X

[jeapal23Participant]

I understand at mr mark cook at queen Elizabeth hospital Birmingham is a regular speaker for mm and is one of the best in this field, My husband is under his clinic. Mark is alo a specialist in stem cell treatment

[petesilverParticipant]

Hello Kathy
I live in Exeter and i cannot speak more highly of the treatment i have received, the RDE Hospital has a specialist heamotology unit for all blood disorders, I was diagnosed in 2003 and have received excellent treatment.
I can expand on all this if you want just let me know.
Regards
Peter
,

[JohnLParticipant]

Hi Tony,

Thanks for the info but I think that we have decided to move further south, either Devon or Somerset. Still a long way to go before we move though. It seems though that generally, Myeloma care seems to be good all over the UK.

John

[JohnLParticipant]

Hi Stuart,

I can totally agree with your statements about the French doctors. We will return to the UK because we were only here on a 10 year plan anyway. Interestingly though, we know a retired professor of haematology (from Nottingham)who believes that the French system is better than the UK because it is directed from the top.

regards

John

[JohnLParticipant]

Hi Peter,

I was only diagnosed in March this year although I have now managed to crack a rib. We are looking at the Devon/Somerset area so it is good to hear that the RDE has a good recommendation. I understand that there was a Myeloma Support Group at Exeter but I haven't been able to find much trace of it.

regards
John

[JohnLParticipant]

Hi Ann,

I was diagnosed with MGUS in November last year and with Stage 1 in March this year, my PP was 20.8. I have been under monitoring and am due for another set of tests at the end of this month. During this time however, I was diagnosed with a series of trapped nerves which has finally been revealed as a cracked rib. Not sure what is going to happen now. We are looking at moving (eventually) to the Devon/Somerset area and have heard good reports about the Beacon centre at Taunton.

Hope that your SCT goes well.

regards
John

[Gill20Participant]

Hi Bev,

It is a very worrying time and we all want to get the best possible treatment,if you read anyone's experience on this site though the majority have had excellent care from their local hospital. I attend The Christie in Manchester and cannot recommend it highly enough. Dr Jim Cavet and his team are very thorough and provide excellent care. The Haematology department has an outpatients and day ward for treatment there is also a specialist HTU ward where you go if you have an infection or for your transplant. A new building is in the process of being built to house the Haematology, outpatients, day unit and wards. I am not sure when this will be finished but I expect within a few months.

Good luck I hope this helps

Gill x

[StuartParticipant]

Hi John, I'm going to guess that the retired professor hasn't been a patient in a French hospital because if he had he might want to reconsider his opinion. In our experience the senior medical people were notable only for their almost permanent absence. The actual people in charge seemed to us to be the ward cleaners. Mind you since everyone in the hospital wore white it was pretty difficult to distinguish who was what. In addition most didn't wear name badges to give you a clue who they were or what they did ( if anything!)…. so perhaps Julia and I are wrong and we mistook the doctors for cleaners and trolley pushers.
Certainly our experience at the Marsden couldn't be further from our time in UCH Nimes. We wish you luck in your search in the UK.
Stuart

[petesilverParticipant]

Hello John
The RD&E in Exeter has a purpose built Haematology Department ( Yarty Ward)consisting of its own reception area, having a day clinic and mainly separate ward rooms, this was mainly (65%)by The "Exeter Leukaemia Fund"(ELF)who still do Stirling work funding many project's and equipment.
I can't speak more highly of the treatment I have received. As I go every six weeks the have my blood checked sometimes its like home from home all the nurses know you.
As for the Support Group I was in it from the start in the beginning it was very successful and we did all sorts of things is was really good, but it proved very difficult to recruit new members, the problems Yarty covers a very wide area and members were beginning to find it difficult to travel for various reasons, so last year we decided to suspend the group but we keep in contact by phone and invariably see each other in day case when we are on various treatments.
It was a great pity really because the meeting were very enjoyable and you got to make some good friends.
If there is any other things you would like to discuss please feel free to ask. if you feel it might be easier I could give you my email whatever suits you best.
Peter

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