Those of you who also use bcpals will have been reading of my progression on this trial. But it occurred to me that it could be helpful to others here having pain control problems.
I had a spinal nerve block about 4mths ago which is wearing off, and of course the pain is returning. A short while ago I picked up a leaflet for SATIVEX at my hospital so came home and googled for a bit more information. I thought this could be a good thing to try before going for another nerveblock so I mentioned this to the pain consultant at the Marsden and he agreed that I should see if I could get accepted on the trial first, and he pencilled a date in for a nerveblock in case I needed it.
I was surprised when I googled SATIVEX to find this was a cannabis based drug that is currently prescribed for MS patients. It has been in use for about 2 years in Canada for MS and for breakthru pain in advanced cancer. Having missed out on the fun in the 60s I thought WOW another chance to recapture my youth.
The inclusion/exclusion criteria is very detailed. I had a full ECG, bloods, urine etc. checked out and a full medical history submitted. Then for a week I had to submit by phone a pain diary. After that I heard I met the criteria. I should explain there is a placebo element 1:4. The trial is divided into 3 cohorts. These are at differing strengths. The drug is an oral singledose spray. I was put on the lowest dosage cohort - and reminded that 1 in 4 would have a placebo. There were numerous questionnaires to complete. The pain diary continues every day for 3 weeks. I still have to work up the dose of 1 to 4 sprays slowly over the first week. The there is the 3rd visit where bloods, urine, BP etc. are checked, and there are no problems with sore mouth. You have a phone contact 24/7 if you are anxious about anything. Then I think there are another 2 weeks on the trial and a visit to follow which finishes the trial.
I did ask what were the options once the trial was finished.
a. If the trial was successful for me would I get the opportunity to have the drug prescribed for me for the future.
b. If I have been on the placebo will I have the opportunity to try the drug for real.
Fortunately there was a Monitor from the Drug Company in the hospital at the time so these questions were checked out with her. I was told yes in both cases. But you would start the titration process again to see how much you needed to control pain.
Happy to answer any questions. I don’t know which hospitals are trialling this drug but I do know there are 130 centres across the world including the UK. Approx 336 people will take part. I was the first one at the Marsden.
Although I am used to opioid drugs I was taken by surprise at how strongly I reacted to the first ‘squirt’. After almost an hour I came over very ‘woozy’ - like faint, dizzy and nauseus and this went on for about 90mins. I am hoping that is a fair indicator that I am not on the placebo. I haven’t noticed any benefit yet but it is very early days - I only started on Thursday.
Dawn