Hi. I might be changing my local hospital to the Royal Surrey County Hospital in Guildford. I can see from their website that are involved in research on MPNs - but I can’t find the name of the consultant who has the interest in MPNs Does anyone know which of the three consultants it is? It will make the transfer much easier, I think, if I can name a consultant, and I’d rather be on the list of a consultant with an existing interest in MPNs. If anyone knows and can PM me with the name ( bearing in mind Maz’s recent request not to name specific doctors on this forum - if indeed that applies here) I’d be most grateful. I’ll stay with my super specialist London hospital.
Happy Easter, Passover or spring festival of your choice.
Soon I’ll reach the 18 month point of my MF diagnosis and the first year anniversary of my MF being treated with ruxolitinib. Hanging in there , making a few pots again and working on the 80% rule. This forum helps me a lot.
Love to all.
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Rachelthepotter
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I am under the Royal Surrey and very interested in your comments. Certainly I will make some enquiries when i go for my next check up in 2 weeks. I am very happy with the consultant I see at the moment. Will let you know what I can find out.
Hi Brenda. You may get a reply twice, as I tried to sent one a few minutes ago: not quite in control of the medium yet. Just wanted to say thanks, and I’d welcome any info. Friends have said that the Royal Surrey is well organised and user friendly ( but the parking is exoensive and can be scarce - but that’s true where I am now anyway. ). All the best
Thanks , Peter, and best wishes to your wife and Nigellastopit
I had friends who had two cats called Oedipus and Debussy. As a child we had three kittens called Freeman. Hardy and Willis, after a chain of shoe shops. Long gone. They used to have an x ray machine ( yes, really) in the shop that you could stand at and your feet woukd be x rayed to check the fit of the shoes. I remember being fascinated by seeing the green screen with the shadows of the bones in my toes moving as I wiggled them. Goodness knows what the x ray dose was.
Haha, I do love the "Oedipus and Debussy, and the "Freeman, Hardy and Willis". Cats are a real inspiration to their imaginative owners/slaves... or what ever we are! We have an addition to our feline family now Nigella Stopit has been joined by Smaug!
The xray machines, I have a very distant memory of seeing them when I was a child and wishing that I could have my feet looked at with one. I don't recall having it done though. It is amazing how enthusiastically xrays were embraced for so many things. We have some old gardening magazines here that go from the mid 1930s, and they advertise a product called "Radioliser" (I might have misspelt that?) which was a radioactive lawn tonic!
We live in Lincolnshire and my partner, an ex-dentist, gets his treatment for ET at Guys, London under Prof Claire Harrison. Her team are specialists and are at the forefront of MPN research.
(Sent too soon. ). I’m fortunate to have the Guys team as my tertiary level doctors but I do need a local haem team too, and that may end up as the Royal Surrey. Might see you st Guys some time!
I have been on run more than 5 years, we tweak the dosage from time to time but leading a full life. You may put on a little belly weight but small price to pay if it works! Write to me in California anytime, andrew@patientpower.info and be sure to follow our programs on patientpower.info. Have next bit town meeting on May 5th live worldwide broadcast.
Sounds very interesting: will make a note of the date and see if I can pick up the broadcast. I too have put on a bit of weight with ruxolitinib: about 3 kg ( call it 7 lb) which is annoying but copable with.
Ihave been on rux since Nov 2012 and apart from having to alter the dose have had few problems. Initially my consultant chased the latest blood results but there was no stability so he decided to leave the dose alone and things settled nicely. Have noticed itching returned after a while on it.
He told me he didn't know what to do with me the last time I saw him, which was very honest and gave me confidence that he would tell me that. Doesn't matter he is not an MPN specialist as he sees Claire Harrison regularly. This is true of most haematologists as there are not that many of them in the NHS. I am happy as I am and enjoying life which is the most important.
Hi Rachel, I have relaxed the rules about naming good hospital etc: Ok, taking into account the responses to the 'no names' rule, I can see the point that being able to name a good hospital and clinician does have its benefits to other people, so how about you all continue to name hospitals/consultants where you feel you have had very good care and advice, BUT, everyone must bear in mind that we all have different opinions and perspectives on what is good and bad treatment, so what one person says is good, another will find something bad about it, what I don't want to happen is that someone may transfer their care and find they still don't like the hospital/consultant/advice etc, and put the blame on this forum or the member who thinks a hospital is great. Whatever advice is given on this site is done with all good intentions, but we all have different perspectives on good and bad treatment. Maz
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Life expectancy with MF
