Living With Mesothelioma -My Diary – The MK 3475 PDL trial at the Royal Marsden has given me such great news today

What a day —WHAT A DAY !!!
It was wonderful and light as we traveled at day break to the Marsden.
What a difference 2 weeks makes.
As usually we arrived early as the roads were good and the local traffic although heavy, kept moving.
We had to wait in the waiting room for a while as they did the change over.
My bloods were soon taken and we had a good chat about Panorama as I said it was a great program and they all came over well.
I waited back in the waiting room as others arrived. Some I had seen before and some I hadn’t and a really lovely lady and her husband that always comes when im there hasn’t turned up. I do hope she is Ok as she has been so brave with Ovarian Cancer that has spread. She is on a trial and was getting good results.
The Doctor called me in and this vision of wonder was shaking my hand. Gee I have been so lucky all through my 6 years of being involved with real dishy doctors. Its a wonder my blood pressure isn’t raised every week.
I now have an Australian Doctor, Sam Smith. He is so sweet with a lovely smile.
We had a long talk about Asbestos and Mesothelioma Bernie Bantom and Mr Fuffy Houses.
I told him about my pains appearing worse in my back and he knew I was having a scan at 11.5am that will tell why.
He said i will get the results next treatment. I was used to that wait so I shook his hand and off we went to get the scan.
Everything went well and I drank cups of water and my PICC Line was re-flushed. It had just been done when I had my bloods done.
The scan done we went to the Cafe for a coffee and a cake. Returning back to the waiting room we sat and read magazines and played on my tablet.
I couldn’t believe that at 1.15 pm as my drug was made up. Brill!!!
Then the PICC line played up. It wouldn’t draw blood and then be flushed again. The nurse put through 2 flushes so it was going in but no blood showed.
I could taste the flush so she knew the flush was going in, she felt no resistance so she went and got permission to carry on but told me next drug day if it happens she will have to use a drug through the PICC line to unblock it and get blood for my sample tests.
Anyway we were off with the drug going in.
Dr Smith walked into the room and came up to me. smiling away –no beaming away.
He sat down on the chair next to me.
So much was going through my mind when he said -We have had a scan meeting- Oh no I thought he was going to say Its all growing again. That would mean I would be off the drug and trial.
He said the opposite, as he held my hand and said they have just had a Scan result meeting. They havent measured but they will do that for my next visit in 2 weeks but he couldn’t wait to tell me. – I have had more shrinkage and in places they have shrunk right back to scaring’s.
So the pain must be coming from the roots of tumours.
This has happened in 1 month from my last scan.
We shook hands again and everyone was smiling but I burst into tears. So emotional
We came home so happy and I got through to my son and told him the good news. Everyone I have told has been thrilled
Dolcie my little friend who is at Uni training to be a Doctor has summed it up for me. “‘m so happy for you!!! This is such a massive step in science xxxxx
It is great news for the Medical world.
So Im home and so far 157 wonderful friends 129 likes so far I have a great bunch of friends that have backed me through all this and then the Mesowarriors. Im really blessed.
I know that the drug could stop working and turn on me, I know this is still only Palliative care and that there isn’t a cure yet but my goodness I feel we have all given it our best shot Thankyou The Royal Marsden.
Good Luck with the Verastem trial that is soon coming through I believe.
We have to support these trials as they do look after you so well.
You have more scans and blood tests so you know just how everything is going along.
A rail called  TRAP that is developed from our positive results in the ADAM trial (where we showed a doubling of the progression-free survival). Our hypothesis is that removing arginine will help improve current standard chemotherapy for mesothelioma in those patients whose mesotheliomas need arginine to survive.

In approximately eight hours’ time the summary will show up on a search. You will then be able to find it by selecting lung cancer from the drop down menu on the trials database search page (

A Study of ADI-PEG 20 with Pemetrexed and crisplatin for Lung Cancer and mesothelioma (Trap Study_

This study is looking at a drug called ADI-PEG 20 with pemetrexed and cisplatin to treat lung cancer and mesothelioma.

There are 2 parts to this study. The 1st part is for people with either

The 2nd part is only for people who have non small cell lung cancer or mesothelioma in the chest.

Doctors can use chemotherapy to treat non small cell lung cancer and mesothelioma. One combination they often use is pemetrexed and cisplatin. This works but researchers are always looking for ways to improve treatment.

Researchers have found a new way of destroying cancer cells in the laboratory, by removing an amino acid called arginine. Arginine helps with many different jobs in the body, including cell growth.

Our bodies can make arginine using a protein (an enzyme) that is often missing in mesothelioma and non small cell lung cancer cells. So if you remove arginine, these cells will not be able to replace it. And this may stop the cancer cells growing.

In this study, researchers are looking at a drug called ADI-PEG 20, which removes arginine.

In the 1st part of the study, the researchers want to find the highest safe dose of ADI-PEG 20 to give with pemetrexed and cisplatin. In the 2nd part, they will use this dose to find out how well it works for people who have non small cell lung cancer or mesothelioma in the chest. They also want to find out about the side effects of having ADI-PEG 20 with pemetrexed and cisplatin.


Start 14/07/2014
End 31/12/2015

Location of trial

  • Cambridge
  • London

Chief Investigator

Peter Szlosarek email <>;

Supported by

Experimental Cancer Medicine Centre (ECMC)
Polaris Group

2 thoughts on “Living With Mesothelioma -My Diary – The MK 3475 PDL trial at the Royal Marsden has given me such great news today

  1. Mavis my sweet, I am so pleased for you, (and Ray). You’ve been hard at it for six years now, and finally, you are reeping the rewards. Well done . I’ll let Rita know asap. See you both soon on a meet. xxx

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