A Diary of a Mesowarrior Living With Mesothelioma -No Keytruda today And a Personal Letter from Lord Saatchi


rocks

Feel Im on the rocks again But just a Blip I hope.

After a great day in London meetings attended and a skype conference all in  the new building at ST Pancras

 People and plants on a sunny lunchtime in Pancras Square, King's Cross

I thought when I saw this being built it was the New Crick Hospital site and I was wrong That is just around the corner. 

View across the Brill Place-Midland Road junction.

This part of London is really being developed and with the fast trains it is so much easier to get here now.

I had a great meeting with MSD (Merk) and a big discus ion about  Keytruda and the future and of coarse they are very proud of my good results. I more scan and if still the same result then we are talking of remission. So unheard of in Mesothelioma.

We had to have an early start to the Marsden and my ankles just had not gone down overnight. So swollen I knew I had to report this and get the problem solved. So I sort of knew I wouldn’t be having the drug but I hoped I was wrong. We are so near they end of the trial and yet I’m really playing around. I knew the problem was listed in the trials report alongside Diabetes and blood sugar drops which I have also suffered with.my blood sugar drops to 2 sometimes.  All reported in the trials result Sheet that has been published.

This is something that when you pay for the drug cant be recorded for the trial but of coarse when you are at that stage you done care what the results are you just want a chance at the drug. Which is what I told MSD. Give us the drug we know what the risks are but we just want as many drugs as possible we want to get away from the dreadful word of Palliative Care. I was told what our drug was made of. Hamsters Ovaries are the basis and they even throw in a bit of rat. I thought well its gone past April 1st and here it is in black and white– Pembrolizumab is a humanised monoclonal anti-programmed cell death-1 (PD-1) antibody (IgG4/kappa isotype with a stabilising sequence alteration in the Fc region) produced in Chinese hamster ovary cells by recombinant DNA technolo https://www.medicines.org.uk/emc/medicine/30602

So if you see me doing this ha ha !! https://youtu.be/fu7D0KKmZGM 

The traffic was light and we arrived early. I was called in for bloods and my very astute nurse saw my shiny skin on my feet and so I showed my swollen ankles and shiny unreal skin on my legs.

She weighed me but I was the same as she was worried the fluid would make me weigh heavier.

I wanted for the Doctor who was very worried about what was going on. My blood results showed good Kidney function My heart sounded good and my breathing was passing so she wants another Echo Scan of my heart. That meant coming ho,me and waiting for the appointment. I thought this would be sent to me but no! the phone rang and I have an appointment for Thursday at St Anthony’s in Cheam. I have to arrive at the Marsden tomorrow early so  that at 8.30 I travel by Taxi have the scan. If everything is OK. I can have my drug. So that is what we will do. The plan is made.

I have started a coarse of Diuretics and this morning I have awoken to little ankles again and my legs are more comfortable. Another Blip seems to be overcome. Oh dear my life is so medical at times which does wear you down but I keep thing that June the first I will be free to live my life as I want to Wrong!! so much has happened to me and so much publicity my life  will never be the same again. It is amazing the people Im meeting and the wonderful new friendships.

I think coming home to a personal letter from Lord Saatchi just about topped things for me.

saatchie

Another very proud moment that we have made it happen and I was able to tell MSD to use this new Act and lets get Keytruda through quicker…. They are really going to look at it. 

 

 

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