It was wonderful meeting up with Liz again after such a long period of not seeing her. I had meant to take a snap shot and post it on the blog but I have a memory like a sieve. The drive down to Leicester took just under 3 hours and we made excellent time allowing us a good 40 minutes with Liz before we met the Professor.
Professor Fennell has a passion for Mesothelioma and wants to help us find a cure and stop the needless dying from this terrible cancer. I also didn't realise that Mesothelioma UK was born out of Leicester Hospital so that came as a shock to me also.
I came away from the consultation more confused but more positive for the future, there are several trials going on for meso which I may or may not qualify for, but the most important thing I found out yesterday that if I jump on any trial now it can exclude me from a trial that is directed for meso later, not what I was told beforehand. I must admit I was lost off and pleased that hubby has a better memory than I, but also the fact that Liz will kindly send me the current information of what is on where so that I can apply.
We discussed again the ADAMs trial, which on all accounts is having good results, the only problem is that 2 out of 3 actually get the drug, so if I were to try that one its better doing it now than later, just in case I had the placebo to start with.
Then there is an immune therapy and chemo trial going, on this you still get chemo and a 50/50 chance you get the stimulant as well.
It seems they still put an average of 4 - 6 months on remission after taking chemo so in the light of finding that out yesterday it seems I and everyone I know who has taken Alimta has done better than expected and we far exceeded the standard. He did mention me having another go with Alimta and I saw hubby's face hit the floor. He is really scared that I take that route, to me I know that my insides seriously suffered and that the toxicity level for my body was too high but I am willing to give something a go if I can buy that extra time. Although if I did do alimta I would prefer to be hooked up to a fluid drip with painkillers mixed in. Therein lies another problem, when do we put ourselves through the chemo, 4 to 5 months of our lives could be (or in my case) ruined with the side effects.
It made me wonder, whilst travelling back yesterday, how do people cope when they know it has spread to other areas, or those with bone cancer, how do they a) deal with the pain and b) deal with the thought that their life will soon be over. I feel guilty about not making more out of what I do, but then what else more do we do with our lives than spend it with the ones we love.
I hope that Prof Fennell gets Leicester Hospital on the map for a No 1 Centre for Mesothelioma, with several trials running, each with good results (a mini USA all rolled up in one hospital) - although it would be nice if it was Bobby Robson up in Newcastle for the simple reason it is closer to home.
One thing I know for certain is that Liz is still passionate about helping those with Mesothelioma and will drive mountains apart to ensure we get the help/compassion/assistance and more importantly the straight answers that many of us want.
It is true that many do not want to hear that things aren't doing well and would prefer to hear stable rather than change, even if there is change - if my hubby had had meso he wouldn't want to know, whereas I need to know.
I am sure I will hear from Liz shortly and I will then pass on what options are currently available and where.
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