Clinical trials

[Janeystu14]

What is available as found out today that the 3 mixed chemo I have been taking hasn't worked

[cestrian]

Hi

I'm on a 50/50 blind trial on Merseyside which combines standard gemcetibine with a MEK inhibitor. The first cycle has stabilised the tumour in my pancreas and I generally feel pretty well. It may be worth checking if it's available in your area and if you're a suitable participant. I did have to go through a raft of tests before acceptance but feel it was well worth while for the care I receive.

[Janeystu14]

Hi

Thank you for that information, i am finding it all so confusing, I have been told I would only b suitable for phase 1 trials as I have lesions in the liver and something to do with the bloods not being low enough. I will however look into this and thank you again for your support.

Many thanks will let you know how I get on.

Jane.

[cestrian]

I've posted on your other thread but I also had lesions on liver and lungs but was still accepted on the trial. Hugely beneficial in my book and well worth pushing for as the extra testing etc is very reassuring and in my own case the care first class.

Good luck

Love and Peace

Mike

[cestrian]

Hi All

Pride comes before a fall as they say and today I have been told that a very small lesion on my right lung has increased in size from 1cm to 1.4cm. As this is over 20% and although all the other lesions and the main tumour in my pancreas have remained unchanged I am no longer allowed to continue on the commercial trial I have been participating in as the sponsoring pharmaceutical company operate a very strict protocol for continuation.

What this means is I will no longer receive the MEK inhibitor tablets but as I have been convinced by the lack of side effects that I am only getting the placebo this really doesn't bother me. I will continue with the Gemcitabine chemotherapy as at present and my real concern is that I will no longer receive the elevated level of monitoring that I have been subject to though I will continue to see the Professor or his assistant every four weeks and of course have the blood tests prior to weekly chemo. My lead trials nurse has also confirmed her availability if I need her help.

I continue to feel well and have gained a further half a pound this week so am ready for my break in Lanzarote next week and will see my GP on my return to discuss any additional checks he can offer. Time to dust off my Blood Pressure monitor at home and put new batteries in the bathroom scales to keep a check on my weight!! Unlike some of the poor souls on here who feel abandoned by the NHS I still have every confidence that even though I am no longer participating in the clinical trial I will have loads of support when the time comes that it is needed.

Love and Peace

Mike

[Cathy]

Hi Mike

Oh I am so sorry to hear this, you must feel very disappointed even though I think you must be one of the most positive people I know!

It is great that you have been so pleased with the level of care you have had and confident that you will continue to get a good level of care going forward. It certainly sounds so, and something must be working for you to feel so well.

It goes without saying that I hope you have a wonderful break, get a bit of sun, enjoy all the Canarian good food (and wine?) and relax!!

Love and peace to you too.

Cathy xx

[Slewis7313]

What a bummer Mike! I know you won't let it get you down (especially with the sun beckoning). Good to see you (like me) are seeing the NHS at it's best. Enjoy your hols.

Steve

X

[J_T]

I can't put it any better than Cathy and Steve without adding a variety of expletives but I'm too much of a lady so I'll refrain.

Disappointed for you Mike but on the plus side you are still going to get good treatment and care and you still feel well. Great to hear the Prof will still be seeing you regularly.

Love and Peace

Julia x

[cestrian]

Thanks all! I've no problem with this as fully confident that the Cancer Centre will continue to deliver excellent care. TBH some aspects of the trial, particularly the rigorous and time consuming eye examinations I can well do without and they were only necessary as a precautionary measure because retinal damage was a possible side effect of the trial drug.

I do welcome the possibilities that not being on the trial offers with regard to mixing up the chemo if necessary though I'm still happy to be guided by the Prof!!

Great day out in Chester today, visited office, met old friend for lunch, glass of red, ate far too much at the Albion, notorious for its WW I memorabilia and eccentric landlord with his "family hostile - dogs welcome" notices and opening hours "when we're shut we're shut" etc. He refused to sell lager until a few years ago but eventually relented but now has a notice on the bar "This month's guest lager - I can't believe it's not p*ss" always raises a smile!!

Well worth a visit if you're ever in the fair city of Chester.

Love and Peace

Mike