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Has anyone had experiences with clinical trials?

LeonieF

Registered User
Oct 16, 2013
10
0
Hi all,

Just a quick one.

Has anyone been involved in clinical trials for Alzheimer's? The doctor my Dad has been seeing suggested that he (and I as his carer) participate in Phase 3 of the clinical trials that restore the Taux protein in the brain (or something like that). It does seem to make sense to try - there is nothing else out there that will solve the underlying process but at the same time, I feel there is so much already to organise for my Dad and I am just getting to the stage where I feel I have a good routine with him and am on top of things, I am worried the trials will just add a whole load more pressure and take up the limited time I have to care for my Dad and work/live my life. Also there is only 50% chance he will actually get the real drugs and not the placebo but, if he does get the real drugs and they do something, I would be so happy we went for it. Dad has made up his mind he wants to go for it but I am a little hesitant. Any thoughts/experiences/advice?

Thanks!!
 

creativesarah

Registered User
Apr 22, 2010
9,635
0
East Hunsbury Northamptonshire
Hi all,

Just a quick one.

Has anyone been involved in clinical trials for Alzheimer's? The doctor my Dad has been seeing suggested that he (and I as his carer) participate in Phase 3 of the clinical trials that restore the Taux protein in the brain (or something like that). It does seem to make sense to try - there is nothing else out there that will solve the underlying process but at the same time, I feel there is so much already to organise for my Dad and I am just getting to the stage where I feel I have a good routine with him and am on top of things, I am worried the trials will just add a whole load more pressure and take up the limited time I have to care for my Dad and work/live my life. Also there is only 50% chance he will actually get the real drugs and not the placebo but, if he does get the real drugs and they do something, I would be so happy we went for it. Dad has made up his mind he wants to go for it but I am a little hesitant. Any thoughts/experiences/advice?

Thanks!!

My friend J has been involved in research projects (he has early onset Alzheimers he is 41) but recently has decided to stop but for a while he has been going to London and Cambridge and I have accompanied him a couple of times. I think partly it would depend on your dads keeness to help others. J has suddenly felt it has become a bit of a hassle but he may change his mind back again and I will gladly go with him.

I have taken part in the Breast Cancer Tamoxifen trial which I found interesting and felt glad that I had done it. My mum died of breast cancer at 51 and my sister had it at 38 but is cancer free 12 years later

dont know whether my ramblings have helped but just wanted you to know our support

Sarah
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,168
0
71
Dundee
My husband was involved in a clincal trial for a vaccine against Alzheimer's. He had a 50/50 chance if being on the live drug rather than the placebo. He took part for around a year. Every second visit he had to go for an MRI scan. Unfortunately the drugs company closed down the world wide trial because the results were not good enough. It was quite a few months later that we got a letter to say he was on the live drug and not the placebo.

It was time consuming as we had to go through to Glasgow. I was lucky that my employer gave me time off to take him through. I don't regret it though. I'm sure it will be through this kind of involvement that a cure will be found.
 

LeonieF

Registered User
Oct 16, 2013
10
0
To be honest I am so wrapped up in what we are going through that I didn't even think how we would be helping others and how these trials are necessary if there is ever to be a cure so, thanks for the positive spin! I just am a bit tired of hospitals - my mum was in and out battling cancer for 5 years before passing away a few years ago. But, I guess if something positive can come from all of this then we should at least give it a go
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,168
0
71
Dundee
I have to say we were very well looked after on the memory clinic where the trials took place. It is funded by the drugs companies so was quite plush. The MRI scans were done on a private hospital. We were picked up from my brother's house by taxi and taken home by taxi (£16 fare each way!). Obviously money is no object. The place was always very busy as they had lots of trials going on. We would have gone into another trial but my husband's MMSE score is now too low for joining any.


Sent from my iPhone using Talking Point mobile app
 

LeonieF

Registered User
Oct 16, 2013
10
0
Izzy, I am sorry to hear your husbands MMSE has become too low. I think my father and I will join the trial, it does sound like the patients are well looked after and if there is anything to be done to find a cure then it does make sense to try. The doctor said we could pull out at anytime if it becomes to stressful for Dad so that makes me feel better about it.