24 August - Disappointed

Back from another session of radiotherapy feeling rather disappointed.

After I first found out about Clomipramine I asked one of the radiologists if we could see the consultant oncologist to discuss the possibility of taking it. I even provided some information, in the form of a printout of what I had found on the internet, so they and the consultant knew what I was talking about.

I heard back from the radiologists that the consultant "could see no reason why I shouldn't take Clomipramine" and we were promised an appointment with him today to discuss it. This we had.

I had really expected to walk away from that appointment with a prescription for Clomipramine together with a recommended dose to take as a monitored part of my treatment programme. But I was told that, though he thought it would be beneficial for my treatment, he could not prescribe it as treatment for a brain tumour because it had not been approved for that purpose by NICE.

Instead, he told us I should go to my GP and get it prescribed as an antidepressant. This was rather disappointing, since first of all the GP may be unwilling to prescribe it either, and secondly because the dose of the medicine prescribed for depression may not be the correct dose for treatment of brain tumours. When we asked if he could provide a letter for the GP explaining why we wanted a prescription for this drug, he handed me a photocopy of the printout I had made from the internet to give to the radiologist!

When I asked about dosage, the consultant suggested that we used the internet to try to find out by contacting the various people at universities in the UK that had done research into using Clomipramine to treat brain tumours. But I am already feeling out of my depth. I may be able to find out solutions to computer or ham radio related problems but reading medical research papers - or even knowing where to find them in the first place - is outside my experience. Besides, I'm not sure that doctors or researchers will even be willing to provide that information to lay members of the public.

This is harder than I thought it was going to be. I really had expected more help from the medical profession. What with the tiredness caused by the radiotherapy, at the moment I don't even know where to start. I could do without having to deal with doctors passing the buck.