[susannahParticipant]

Hi Tom and Eve I feel the same as you both. I dont blame the consultant, her hands are tied , but as far as the drug companies go its all down to the root of all evil, money, im sure they will say it isnt, its all to do with the safety etc of the patient, but I say if the patient is well enough to recieve the drug then it should be there choice to have it or not.

No Eve there is nothing, apart from high dose dex and chemo, thing is Michael never complains about being ill, he takes everything thats thrown at him , but when his consultant mentioned high dose dex he just looked at me and shook his head, I just dont think he would cope with it, its something, when he feels like it we need to talk about. It may be sooner than we think as she will be ringing us with his up to date PP results next week so we will take it from there

Sue

[tomParticipant]

Hi Sue

Yes am sure it is all down to the cost :'-( and that makes me angry.

Good Luck for the bloods next week

Tom xxx

[TinaParticipant]

Hi Sue,

I find it hard to believe that it's the drug company who is witholding the Pomalidomide. If it's a matter of cost that will be down to the Health Trust covering your area – and not fitting the criteria? what is that all about? – have they explained this to you?
Patrick recieved Pomalidomide on compassionate grounds, as you would expect, as there was nothing else to treat him with at the time and yes it could have made him worse but that was his call to make.
If you have the energy and Sue, I know you do, try getting in touch with your local MP, make a noise.
Best Wishes to you both

Tina XX

[Author]

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