Hi Katy
My wife was diagnosed in 2008 ( she was 53 )and went through an SCT in 2009. I wrote a blog at the time as a way of keeping her friends and family informed about her progress. If you’re interested Google “Jules in England” and it should take you there. It’s not very scientific but you might find it reassuring, as her experience was nowhere near as bad as we had expected. I stopped writing the blog once our lives had returned to a new normality.
Good luck and best wishes
Stuart
Hi Fiona
sorry for the delay in replying…. but anyway….
it’s good to know Kevin is keeping up his knowledge base with MM. We saw him for probably over two years every time we went to the Marsden and got to know and like him. He was always the one that attended the worldwide conferences and networked within the MM community and so was always completely “up to speed” with all things MM. My own thoughts in regard to the points you raise are as follows.
I don’t think my wife would consider an allo at all … unless she were in the last chance saloon. It’s just too risky, and the only people we know (or met) who had one are now no longer with us.
I’m not sure if Kevin is talking about an “average” performance for revlimid to be effective, you perhaps should question him more closely on why he thinks one year is all. My wife has now been taking it for four and a half years and it still remains effective….. maybe she is lucky… I don’t know.
We have’nt been down the Pomalidamide route so have no experience, but again I would ask him; I’m sure he will be able to explain why.
On a more general level the reason we liked seeing Kevin is he would never sell you false hope. He would say it exactly as he thought it based on all the knowledge and experience he had, and on the first few occasions we found it a little disappointing….. probably because it was never exactly what you wanted to hear…. but over time we realised that he was giving realistic advice that we could expect to exceed…. if we were lucky.
I’m not sure I understand your words about Philip and two years. Is this two year survival? Or two years on the Rev/Pom Combo? The latter I expect; and if so then I would expect that’s Kevin’s “worst case” scenario.
Since the Prof has departed the Marsden I would guess they are still trying to find someone suitable to replace him. In the short term ( I think) Martin Kaiser is in charge, and if you get to see him then you can have every confidence in him. We see him regularly and couldn’t speak highly enough of him.
PM me if there is anything specific you would like to know.
Best of luck
Stuart
Hi Debi
there is plenty of parking space at the Marsden in Sutton, although it’s not exactly cheap. If however your appointment is in central London then parking is almost non existent unless you have a blue badge. You can always take a chance, we did and were lucky; but I wouldn’t recommend it.
regards
Stuart
Please given Kevin our best wishes ( from the couple from France) as we always made a point of seeing him when we went to the Marsden. We had every confidence in him, and I’m sure he will do a good job of looking after your husband. Add to that the fact that he will be working in conjunction with the Marsden will mean he will get the very best care available. Treatment tailored to your individual requirements. Do you have an individual contact at the Marsden?
all the best
Stuart
Hi Fiona
my wife is a patient at the Marsden and has been on Revlimid now for four and a half years.
If one of your team in Brighton is Dr Kevin Boyd then you are in good hands. Kevin was part of the prof’s team at the Marsden and so has a lot of experience of MM.
Good luck
Stuart
Hi John
click on my name that you see in orange,it will show my profile, and to the right hand side you will see it says "send private message". I've just sent you one with my email address on.
regards
Stuart
Hi John
yep! that sounds like the sort of caring medical professionals we ran into regularly. Julia and I went to most of the best MM hospitals in France, and with only one exception we were treated with that same attitude. The only exception was from the team under Professor Phillipe Moreau at CHU Nantes who seemed to us to be very good. ( He also happens to speak English ).
The only reason we didn't turn to them was because we had in the meantime been to England and met with Prof Gareth Morgan and his team at the Marsden who ,for us; were quite outstanding. Julia has been a patient there since December 2008.
We found the process of accessing the healthcare system in the UK quite straightforward, and if you want details PM me.
regards
Stuart
Hi David
that's a really nice part of France to visit.
In the highly unlikely event you'll need it it just happens that you are very close to arguably the best MM hospital France can offer, that is CHU Nantes. We have met the head of department Prof Phillipe Moreau on one occasion and Jules has also been in email and telephone contact with him. He also happens to speak English perfectly and is also a friend of Prof Gareth Morgan at the Marsden. He is almost certainly the person Julia would turn to if she was planning to be treated in France. Some may remember that he also came to an MMUK infoday in London (2008) as a speaker.
Enjoy your holiday!
regards
Stuart
Hi David
I've been treated at a French hospital, and my contribution was 20% of the total bill. I'm not sure that being a pensioner makes any difference, but perhaps call The Centre des Liasons Europeennes et International de Securite Sociale (CLEISS) on 0033145263341 (from the UK). They offer advice in several languages including English. I'm going to guess however, that as with all things French it may be a bit of a bureaucratic nightmare.
Whereabouts are headed to in France? Julia and I have been to see several of the MM specialist hospitals, and we might be able to point you in the direction of one, in the unlikely event you need help or advice.
regards
Stuart
Hi David
we live in France, but my wife Jules is being treated at the Marsden. She has been taking her prescription morphine backwards and forwards across the channel for the last five years, and we've never had a problem at either side's customs. They seem far more concerned about illegal immigrants or cash to me. I wouldn't worry too much about it, as it's pretty obvious they're prescription drugs; rather than the other kind.
regards
Stuart
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
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
Hi David
I don't know if you're going by air or sea but I could offer the following advice.
My wife Jules and I travel to and from France quite often, and I have certainly travelled more than once with less than 6 months left on my passport. Our experience is that the French immigration people (certainly at Dover) are very relaxed about passports and often wave us through without even a look. I think in general they don't regard people who are clearly English as any kind of threat, or hardly likely to abuse their social security system.
Airports may be a different matter, but common sense would make it obvious you're just on holiday, and therefore unlikely to stay beyond Dec 2013.
I don't think they do the old style six months passport anymore, probably for security reasons as it was just to easy to abuse.
Enjoy your holiday and I hope it's a nice corner of France you are headed to.
regards
Stuart
Hi Sarah Jane
I wrote a daily blog for my wife's treatment, so that all her friends in France could see how she was getting on, and reduce the need for lots of phone calls. If you want to take a look at it the address is: http://julesatthemarsden.blogspot.fr
Go to November 2008 for the cell collection and Jan 2009 for the SCT.
It's only one persons experience but I would hope that you might find it reassuring.
All the best
Stuart
Hi Vicki and Colin
my memory of side effects following her SCT was principally her tiredness, but I think they appear in more detail in the blog follwing on from Jan 09. She did relapse, but over two years ago commenced Rev and Dex, which after 4 months her PP level was undetectable, and there it has remained for a shade over two years now. She has been lucky (if that is the right word to use for anyone with MM!) that the side effects of Revlimid have, for her, been almost non existent… and so for the moment our lives have assumed a closeness to normality… whatever that is?
best wishes
stuart
