We have had a few days away which on the whole were a nice change for both of us and we did enjoy the time. My husband only had a couple of falls, thankfully neither were serious.
We were expecting to be away again tomorrow for our first visit to Haywards Heath and the possibility of being part of the drug trial. Unfortunately we received a phone call this afternoon saying the appointment has been cancelled because the worldwide numbers for this part of the drug trial have been reached. Just another blow. Is there anyone else who has been given this news recently.
Hoping something else will come along soon.
Best wishes to you all.
Peter2.
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Peter2
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Hi Peter
When my husband had PSP we were asked if he would like to take part in experimental trials at the hospital. He was very enthusiastic about it and they told us they would get in touch. Nine months (approx) passed and we heard nothing from them. My husband died and several months later they phoned to ask if he would like to take part in these experiments. You can well imagine my reaction to this.
Peter 2, how totally disappointing for you. One thought I had was have you asked if he is able to join if someone else drops out? It seems that there are a lot of people dropping out because they are not seeing any benefit. I'm sure the drop out rate must be higher than usual as people get worse and the journey becomes difficult. Also, it seems very likely that when this phase of the trial finishes another one will start. Usually the next phase involves giving the drug to the masses (with no limit on numbers) . As this drug has Orphan status this is likely to happen immediately after this phase ends, which is what, a year? Perhaps you will have to watch carefully as everyone becomes a lab rat and reap the rewards at the end if they are good?
One other thought was, that these companies will have periodic reviews of the trials as they take place. If they are having amazing results, I think there are laws that state that withholding drugs that are effective when no others exist is illegal and immoral! So perhaps keeping an eye on events on their website etc would be worth doing. In theory human rights laws are on our side?
We asked about getting on the Davunetide trial a very long time ago (maybe 18 months ago now) and also heard nothing, I don't think the person responsible for recruitment was well organised (Lina!) or a great communicator!!
Yes, I got my Dad all psyched up for the Dauventide trial. The website said STILL RECRUITING....maybe some whiz over there should update the website! I have spent hours upon hours upon hours looking. I think I will take a break this afternoon.
I am NEW to this site.....My Dad has PSP, he shuffles when he walks, falls, is hard to understand, we cut his food for him now to try and cut downon the choking. He can be cantankerous too! A host of other symptoms, that I am sure you have all seen.
My name is MJ (Mary Jayne)....we are all on a bumpy ride!
Hi there...my husband Frank went for assessment for the trial at the beginning of last month but his urine sample wasn't clear. We went back today as he is now clear....he only had to do some of the assessment again & they think he'll be OK. However, they had a phone call yesterday from the " powers that be " to say no more were to be accepted as they had enough worldwide. The Consultant ( at Salford Royal Hospital ) is ringing the team in USA tonight as he thinks this is scandalous....those who have started the assessment process,in his opinion, should be allowed to continue. He is a very persuasive man so our fingers are crossed.
Thank you so much for your very helpful reply. My husband was asked if he would like to stay on the data base in case anything came up. He agreed to having his name remain on the database.
Your other points about how trials may work as they move into the next stage is also helpful and I will certainly keep a check on the web site.
You know the feeling of disappointment regarding the trial. I hope your consultant does manage to persuade the powers that be to allow Frank onto the trial. Unfortunately my husband had the very first appointment cancelled, so he never even got started.
My heart goes out to you over the frustration created by trying to get things done for our relatives with this awful awful condition. At times it can make one feel so helpless. This is where the blogging has been good. I have never blogged before, but I find being able to write hear and ask questions is one of the most useful methods of support especially as my husband is in the relatively early stages of psp.
Bumpy ride is so true. Every day, hour and minute can produce a sudden change in what we are doing.
Hey Hazel, My Dad's name is Frank too! Weird. I am so tired of searching for ANY pill that will give him some sort of hope, but I will keep looking!! If I find ANYTHING, I will post it here....hope others will do the same. I would appreciate it.
Thanks for the welcome, I appreciate it. I was never one for blogging, or even talking out issues...but reading some of the things on this site have made me realize that there are others in the EXACT same boat and only those of us in these boats actually understand!!
Gosh - another Frank! My Frank has been in nursing care for ten weeks now, confined to a wheelchair, he concentrates so hard on getting his words out, like everyone else on the site, i do find it upsetting, but grateful he seems well in himself, but i am not going to tempt that awful fiend "fate" by adding any more! I hope the trials will be successful and that there will soon be a prescription drug that will benefit all the PSP patients, which will also benefit the carers!
I had a similar phone call the other afternoon - I was due to attend for initlal assessement this coming Thursday. I was really disappointed and felt rather rejected actually. I saw on a drug trials site the comment "This study is ongoing but no recruiting". My husband and I had booked two nights hotel accommodation just outside Brighton to enable us to make the early appointments (we live in the East Midlands) - we have decided to keep the hotel booking and have a couple of days at the seaside. I like to idea that we may all have a chance of taking the drug perhaps within a year! SueW xxxx
Thank you for your comment. So sorry to hear you too have been affected and disappointed by the cancellation of the initial appointment. Let's hope something else will come along shortly. We had booked a hotel for one night and therfore cancelled. However do enjoy your few days away.
Every cloud has a silver lining. Sometimes its hard to distinguish the silver lining with psp!
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