April 15, 2012

drug trials

Hi BW, I am not sure why it is called a millennium trial I must check and see how long the trial has been going. Yes we do have a dedicated nurse and we were given her direct number to use.  Mr Mog will be seen each month and have scans every 2 months while on this trial. A friend on Ravelry informed me that they can work round stuff such as the infection so it wouldn't necessarily preclude Mr Mog from going on the trial. My trouble now is that I've been googling(as you do) and some earlier trial results are in. It seems that of 26 on an earlier trial, 23 experienced side effects. I haven't told Mr M yet, I need to do more research and at this stage I don't want to be giving him possibly false information if for example they have altered dosage or something similar. He is worried enough over going into the trial. But as I wrote earlier they really haven't given us any feasible alternatives.

3 comments:

Freyalyn said...

It was lovely to see you both yesterday. I do hope that this works well, and Mr Mog is one of the ones with no side effects.

Blue Witch said...

So pleased that you ave a dedicated nurse. I know that has been hugely helpful to other people I know in this situation.

Googling any medical condition is a bad idea, as you know. And besides - if 23/26 had side effects, some of those were the placebo group presumably? With any medication we are all prone to put anything out of the ordinary down to the drug - doubly so with drug 'trials'. So who knows what these effects were due to - or how things might have been if one wasn't on the drug trial.

I think you're doing just the right thing, carrying on as near to normal as you can, and meeting up wtih your usual friends etc. I don't think it's helpful to get into forums on specific medical conditions as there are always very needy people who the rest feel they have to prop up, when they have the least resilience themselves. And I know that you're one of the world's helpers, which is a lovely quality, but - just for once put number one first!

Thinking of you both.

Ashling said...

Wishing you both the best possible outcome with the least possible ill-effects....