Tuesday, 1 December 2009

Don't buy me golf lessons yet

I've just started in a drug trial with Kings College Hospital. I just scraped through the screening process with a FVC of 72% and started the drugs last Friday. I say "started the drugs " but as with all trials there is a 50/50 chance you'll be in the control group getting a bloody placebo! Mind you, the people talking the real drug in a trial a couple of years back probably wished they'd been getting the placebo as the drugs ended up accelerating there progression. Five days in and nothing to report. I'd entered into a progression 'spurt' a couple of weeks back which has weakened my legs and arms further (my arms are now at the point where if something is not mouse or remote controlled I can't do much with it ) Hopefully I'll stabilise for a bit.

Here are some of the details

Trial participants
In total, 470 patients with ALS will be included in the trial in 5 different countries (France, Germany, the United Kingdom, Belgium and Spain).

Benefit of the trial

You were invited to participate in this trial because you have been diagnosed with ALS. It is possible that you may benefit from this new drug because presumably (as was demonstrated in animal experiments) it can exert protective and regenerative (restoring) effects on the nerve cells and so contribute to reducing your discomfort and symptoms, and slowing disease progression. In the case of your random assignment to the group of patients receiving  placebo-capsules (without active substance) you will not have the potential benefits of this new medication. You may decide to withdraw from this trial at any time, without giving a reason, and without penalty or loss of any rights or benefits to which you are otherwise entitled. In addition, as part of your participation in the trial your health will be closely monitored. Your participation in the study may help patients in the future by giving important information about TRO19622 and the treatment of ALS.

Alternative Treatment

Currently, the only medicine shown to be beneficial in MND is the medicine called riluzole, which you’re already taking. This alters the rate at which MND progresses and in a study of people with MND treated with riluzole or placebo over a period of 18 months, those taking riluzole survived on average 3 months longer than those on placebo.


Anonymous said...

Hi Steve, Dave F passed on your blogsite to me. i know it has been a long time since we last saw each other but i do often think and wonder how you are getting on. My daughter loved your son's Rabbit story (she's 11)- your son's got quite an imagination.
i hope the drug trial helps you in some way. i can only imagine the frustration you must be going through. i'll log on to your blog every now and then to see how you are getting on.
Best wishes buddy- from Raj B(football at Tiffins Raj).

Anonymous said...

Hi Stephen

Just got details of your blog from your Xmas card. It is great. Good to see what you are all up to. I shall visit it regularly to keep up with all the things you are doing.

See you soon Christine

graham said...

Good luck with the trial
Hope to catch up soon
Take Care

Anonymous said...

Thanks for making the tremendous effort to write this remarkable blog and keep in touch. I feel truly humbled...

I tune in often and love to hear all the family news too. The trumpet recital was just classic!

Love to you all.

Anna P