Royal Marsden Hospital Sutton - anyone else being treated there?

[Gipsy123]

Hi

I have primary myelofibrosis, still on rux 15 mg twice a day. Don’t seem to qualify for any of the other meds, 🙁 and I’m getting by with blood transfusions every month or so. Intervals irregular. . I’m living back in Surrey now ( had been treated at Guys, then Oxford, then local hosp at Redhill) now being treated at the RMH Sutton - is there anyone else on the forum being treated there ? Would love to get in touch and maybe meet there for a coffee some time.

RMH switched to electronic patient records and a patient portal on March 17 th this year, and I’m finding it a nightmare to get meds dispensed and access to my blood counts. Nearly got that sorted, I hope. However, thereare no MPN related materials in waitng areas, so its also an oppotunity to put some info out there. There’s a good senior nurse who’s been trying to get my electronic records accurate and make sure that my rux continues to be dispensed as 2 x 15 mg , not 6 x5 mg. tablets.

Feeling very tired and grim. Would welcome meeting some other local MPN folk.

Rachel

[Aldebaran25]

hi Rachel, I am not at Royal Marsden but at Guy's, sorry to hear of the difficulties with the new electronic system , I imagine it will take time to get over the teething problems! Nurses are the best at sorting out problems, I know the ones at the haem unit at Guy's are briliant. Anyway, just a quick note to say that I hope it works out for you eventually at the RMH and all the best!