Retuximab as second line treatment in the UK

Hi all,

Does anybody from the UK have experience of getting Retuximab as a second line treatment in the NHS. MY doctor has told me that it is unlikely to be funded because its not licensed for ITP use. And will only usually be funded as a third line treatment. Instead he recommends Spleenoctomy as a second line treatment. I'm currently on a second cycle of prednisone. Count is 60 and dropping. I'm also having the indium scan this week.

Thanks.

Abuisa

Abuisa:

You might want to watch this video. It is given by one of the top ITP Specialists in the UK:

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

It's all part of the postcode lottery I'm afraid. You do need permission from the PCT to get Rituximab but most nowadays will give it. I got permission but never did have it as my haematologist of the time didn't think it would work. She hadn't had much success with it. Splenectomy has gone way out of fashion and rituximab is fast following it as romiplostim (Nplate) takes over in the popularity stakes. You don't need permission for romiplostim if your haematologist prescribes it.

There's a network of centres of excellence springing up around the UK where you should get the most up to date opinions and treatment. There's a list at .. oops the link doesn't work any more. I'll ask about it and see if I can get it reinstated. But anyway there's a number of hospitals and consultants who are becoming experts in treating ITP. Where are you in the country?

Oh I see that I gave you that list of centres before so you will have seen it already, so I can't add anything else to my suggestions then.

Hi, I think Ann is right about the postcode lottery thing. My son's doctor (Manchester) has said that there would be no problem in getting Rituximab. He's had two weeks of prednisolone and a try at IVIg to date. I really hope you get something sorted soon.

Many thanks for your responses.
Unfortunately, the platelet survival scan didn't work. My platelet count was 34 (& dropping) and this apparently is on the borderline with regards to this scan. Most likely, I will need to go back on a third cycle of prednisone to drive up the count profile for the scan. Got an appointment with the consultant on Tuesday: so will raise the issue of retuximab.
Many thanks
Abu Isa

Hi Ann - do you have a list of the centers in the UK please or could you tell me the closest one to Portsmouth as my local hospital is of no help and the watch & wait is really not working for me.

Sharon

List of Centres is here.. itpsupport.org.uk/itpforum/centres.htm

Your nearest would be University Hospital Southampton but no details given so it must be a new addition. They have a big haemophilia unit there run by Dr Rashid Kazmi and they probably deal with ITP there. It's good to get a doctor whose primary interest isn't the blood cancers.