NHS !!!

Well I got a letter offering me an appointment for the scan on my head. But it clashed with the marsden. So I had to change it. Great, best date  was 3 sept. Only  problem is  thats 3 days after my appointment  to get the results of that scan. So If they  have a system  to get results of a scan 3 days before  you have it I am all for it. So I am going to  cancel that and get it changed. Its a  pigging nightmare juggling the marsden  with  traveling all over and fitting in mine in Ashford,Canterbury and at  whitstable.

But good bit today is  we collected Louis from kennels.

Home again

WEll  what a smashing  trip to ESS Safeforce, Daniel treats us like Royalty. colected at the door  to door  fed and watered  . Nice hotel good food. And Richard  worked so hard on the almost 300 mile trip. Magor  jams  coming home but he took shortcut alley runs and what  would have been  over hal hr sitting  still  we  came out  in front of the jam in 5 mins. Well done.

We met old faces again and made new friends. Only downside wat leaving Louis but we can  get him tomorrow bless him.

Poor ole Louis

Well  the rotten part is done Louis is now in  kennells. He was excited and seems keen to go right up to the point where we enter. Then all the dogs start barking. Thats it, arse down legs locked and he aint moving. I dont blame him it is intimidating.Like walking the plank bless him. He is booked till thursday but we will  pick him up early wednesday morning. So we are off  to ESS to give a talk. Its a lovely day again hot already. Its just an overnight stay. I am sure the seagulls wait till Ive cleaned the car then they target it. There is an enormous pile of  crap all down one side again. If you leave it you need a sandblaster to shift it.

Lazy Day

Some days  its hard to remember what day it is. Today Sunday. Not a  nice day a bit fresh.  We have packed a few bits  as we are off to ESS tomorrow to give a presentation to some new members. Ive been tidying up  our presentations. I usually spend hours  amending  changing updating adding, I am never satisfied. I try to do the best I can for Mavis. So Louis goes into Kennels for a couple of nights. Thats the part I hate. I  hate leaving him.

Mesowarriors Anual Meet

Because the forecast was  highest ever temperatures maybe reaching 100 d in London we were hesitant should we go  and suffer the underground. But yes it was hot but the  trains were empty. we arived in london around 11 am and  got on underground. No problems. We were first to reach covent garden we were soon joined by Jill we got  cold drinks and waited for the  rest of the group. We had all  met by 12.30 and slowly we made our way to the venue to eat. very nice.. Not overly impressed with my  lunch. I think it  was one that had been previously cooked and reheated in oven. But  it wasnt for the food it was the company. Good to see old faces again shame  some couldnt make it.

A Dairy Of A Mesowarrior Living With #Mesothelioma #asbestos — On a new trial and in the heatwave we went to a London meet up with #Mesowarrors

 

 

 

 

 

 

 

 

 

So much has happened both medical and personal I dont know where to start.

So lets start at the beginning

On Monday 22nd July saw us going to the Marsden for a scan but I knew the Mr Nasty Junior was growing as pains in that shoulder blade on the left hand side was back, my voice was changing and the ribs hurting.

I had a sore mouth as well so so much was going wrong.

Wednesday again to the Marsden for results and I was right more growth was seen so Im officially off the MK3475-28 trial.

BUT

I signed all the papers for the HyPeR Phase 1 trial, Dose study of Eascalation of Guadecitabine (SG1-110) A second generation Hypo-Methylating Agent in combination woth Pmbro (MK3475) in patients with refractory solid tumours

I have a list of dates which is —Week 1 everyday a injection of the new drug for 5 days and an infusion of pembro on Day 1 phew!! now you know why we bought a new car we had to have reliability.

This all starts on August the 12th

On that day I will have a Bi-Op and just the injection in my tummy of the new drug.

This doesnt mess up any dates I have booked as I can go to the Marsden at 8.30 have the injection then get the train into London my only worry will be if i do get side effects but in these trials they list all the side effects possible its not to say your going to get any.

My only problem was a nurse talking about Macmillan, equipment I need at home and palliative care as running out of options now. I have been running out of options for 10 years its not the way to talk to me. It played on my mind and made me feel so sad. I have had to shake that feeling off and lets get on with it.

So I was so happy to be able to go to London yesterday even though they were saying dont travel because of the heat.

The journey was lovely as the car park at Whitstable and then the trains were all empty as so many people listened to that advice.

The Mesowarriors all met at Coven Garden.

These are a group of warriors that I call the senior ones, the Carers that have lost their loved ones in the 10 years I have known them and they Know Linda Thomas from Australia – as she visits her daughter.

 

 

 

 

 

 

 

We had a lovely meal and a great chat so I feel so much better now and we all said our goodbyes and travelled in the heat back to Whitstable and just as we got out the train there was lightening and rain and we got soaked –well at least it cooled us down.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A Diary Of A Mesowarrior Living with #Mesothelioma #Asbestos — At the crossroads as Im going on the Hyper Trial ?

 

 

 

 

 

 

Well today Im at the cross roads again.

I dont know what path way is marked for me.

I knew my Mesothelioma had regrowth so Im prepared for a scan and the a bi-op and then a new drug but what I wasn’t prepared for was a phone call at 4pm with my Marsden Doctor asking me how Iam.

He told me they have decided not to wait for the scan result they have taken me off the MK3475-28 rechallange and he would send over by email the new trial.

I have received that and ray printed it off for me while I cooked dinner.

So we have a new plan now.

It made me laugh as I was wondering if I could blog but its written in the print off to talk to my friends. I think they realise just how many friends I have. So here you are world and all my friends.

Im going on the Hyper Phase 1 trial.

Hyper trial guadecitabine dose escalation With Pembrolizumab Mk3475 https://www.centerwatch.com/clinical-trials/listings/214463/castration-resistant-prostatic-cancer-combination-study-guadecitabine-pembrolizumab/?&radius=50

Brief description of study

HyPeR is a multi-centre Phase 1 Dose Escalation Study of Guadecitabine (SGI-110) a Second Generation Hypo-Methylating Agent in Combination with Pembrolizumab (MK3475) in Patients with Refractory Solid Tumours. The investigators will be investigating the safety and toxicity of the combination.

Detailed Study Description

This is a phase I trial of the combination of the hypo-methylating agent guadecitabine and an anti-PD1 antibody (anti- programmed cell death protein 1) pembrolizumab. Patients will receive subcutaneous guadecitabine daily on Days 1-4 of each 21-day cycle. Patients will receive pembrolizumab intravenously once per 21-day cycle: on Day 8 of Cycle 2 and on Day 1 of each cycle from Cycle 3 onwards.

The rational for this design is that this pre-loading with Guadecitabine will sensitise the tumour to Pembrolizumab through the re-expression of genes that enhance tumour recognition, the increase in density of tumour infiltrating T-cells and stimulation of the adaptive immune response.

In Part A (Dose Escalation) the investigators will investigate escalating doses of Guadecitabine in combination with Pembrolizumab. Patients with advanced solid tumours will be recruited in cohorts of 3 to 6 patients to investigate the combination of 200 mg of pembrolizumab, administered as an intravenous injection, with escalating doses of guadecitabine, administered via a subcutaneous injection, once a day for 4 days (Days 1-4). Guadecitabine dosing will start at 45mg/m2 but can be decreased to 30mg/m2 in the event of toxicities or increased to 60mg/m2 in the absence of toxicities. Once the maximum tolerated dose is reached (or under the advice from the Safety Review Committee) patients will be enrolled to the dose expansion phase (Part B).

Part B (Dose Expansion): 20 patients will be recruited to Part B to further explore the safety and activity of the combination of guadecitabine and pembrolizumab. This cohort will include, but not be limited to patients with: castration resistant prostate cancer (CRPC), non-small cell lung cancer (NSCLC) and possibly other solid tumours based on emerging anti-tumour activity data from Part A and any other relevant preclinical or clinical published data.

Approximately 30 to 35 patients will be entered into this trial, 6 to 12 patients in Part A and 20 patients in Part B.

The anticipated accrual rate of the dose escalation phase will involve approximately 3 patients per month across 2 centres. Accrual rates could be higher or lower but this estimate takes into consideration that the first patient on an escalation cohort should complete Cycle 2 Day 15 prior to accrual of further patients in the cohort. Accrual in the expansion phase is estimated at 2-4 patients per month across 2 centres. It is expected that the duration of recruitment will be 12-24 months.

Clinical Study Identifier: NCT02998567

The side effects are simile to Chemo except one glaring thing that stands out to me ALOPCIA So I could lose my hair. Well I already knew that and I have 2 wigs so I will begin to use them so that I get used to wearing them.

So that is it I have to wait for the email with dates and try and work my speeches and conferences around them.

I just know Im going to get muddled with what is on what day. Take one day at a time

I have a inflated ball at the moment I dont know whether I dare to hope everything is going to be Ok as Im just not thinking at the moment. I cant get my brain around all this as I thought I would always be in remission.

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – Guy’s and St Thomas’ NHS Trust and LASAG host a memorial and thanksgiving service.

 

 

 

 

 

 

 

 

 

I have just realised that I haven’t done a blog for our day at Guys Hospital.

We travelled early in the rush hour to arrive on time. You cant miss where you are going as guys is now in the shadow of the Shard.

The chapel is so pretty with a ceiling like a wedding cake.

 

 

 

 

 

 

 

It was a day of reflection on Mesowarriors past. Candles were lit and placed on the alter.

Harry Steinberg QC read a very moving poem.

I spoke about

Hope

I realized that it might be compared to a beach ball that someone is hanging onto in the water. When fully inflated with hope, the beach ball provides the buoyancy many patients and their families need to stay afloat through serious and chronic illness. However, when patients and their families learn that treatments are no longer effective or that their disease has progressed and their time is short, the beach ball filled with hope often begins to deflate.

4 years of Chemo the ball inflated

Then growth and told no more treatment

The Ball deflated

2 Years of a trial Inflated

2 years free

New Growth Deflated

Rechallange the drug inflated

We sang hymns and prayed. Then out into the sunshine and walked over to the cafe

 

A very thought provoking day as we travelled back to Whitstable.

LASAG wrote

What a lovely Action Mesothelioma Day service at Guy’s Chapel this morning to remember those past and present who have been affected by Mesothelioma. Thanks to all who attended and supported the event. — at Guy’s Chapel.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos —Ray and I are Doctors (Hon)

What a day yesterday was it has totally blown my mind away.

We were collected by taxi and as we came into Rochester high st the roads were full of young graduates all robed up walking to the cathedral with the parents and friends.

We were met by some wonderful people who seemed to now who we were straight away and ushered to a the gowning room.

We had the instructions :-

When you arrive at the North Door of the Cathedral, you will be met by Simone Kraemer who
will be your steward for the day. Simone will look after you throughout the day to ensure you
are included in all of the day’s celebrations.
There will be official photographs taken prior to the ceremony and Simone will assist you
throughout these. Following the official photographs Simone will escort you to your reserved
seat in the Cathedral in time for the processions.
There will be approximately 280 students graduating from the School of Music & Fine Art,
School of Journalism, Kent Law School and Kent Business School along with yourself and
an audience of approximately 500 who will consist of student guests, VIPs and academics.
You will see that Mavis and Ray will be awarded the degree and deliver their address
approximately half way through the ceremony.
So we had many photos taken in the Garden of the cathedral and then came in put our robes on.

Joanne and her Mother Maureen had to leave us  along with all our guests .

 

Paul and Lee were there

Our Orator Louis Naylor who we had met previously at Canterbury Uni and Lorna Parrot (who has been emailing us from the start before Christmas and had sworn us to secrecy) kept us calm.
Then every one lined up at the door and we had to a into the Cathedral.
We walked around to the main door where with the Mayor we proceeded in line down the aisle. It was like something out of a movie as we lead the procession through the Cathedral. then the fanfare had me in tears. This is UK pageantry at its best in a wonderful Cathedral that I know so well as we used to live in Rochester Kent.
So many people all turned to watch us just like our wedding day 59 years ago.
I had huge smiles for my friends that were there and Brendan Tulley A US Lawyer waved his arms at me so I just waved back. After all I had been told that Harry Hill had skipped down the Isle so I knew I wouldn’t get told off If I waved with both hands bank to to Brendan. He had already written on my Face Book — I’m on my way to celebrate and honor some of the world’s best people, Mavis Nye and her husband Ray. They are being honored for all of their incredible work standing up and fighting for asbestos victims and cancer survivors! I’m continually impressed with all they do for Meso warriors and so happy to call them my friends!
My own brother Martin was beaming away with pride.
I can not put into words what I was feeling. Its impossible.
Please just watch the video now as this is what happened.
Ray was in tears as we finished he just broke. but I was so proud of him and so thrilled he had been given the Honour it is great that a Carer has been aknowledge in such a way as they are usually the unsung heroes and have to take back seats.
They had never had a Couple before and they had never had a standing Ovation before –you know me First at everything in this 10 year old journey of mine.
When it was all over we walked back up the aisle with the wonderful Mayor who beamed through the whole day with me. As did the Chancellor and all the University.
I now have freedom of the Uni which I intend to use to the full and attend many functions but above all Im going to be given the chance to do our presentation to the Students so Asbestos and Mesothelioma has really been given so much awareness. Im so very pleased about that.
Lunch was served to us in the Crypt and we had our guests chatting away with the Uni Professors.
That was it all over. we said our goodbyes but then off to the Dockyard where Hugh James. Field Fisher and 12 Kings Bench Walk had sponsored our Swaray We had a lovely harpist playing a lovely touch from Harry Steinberg QC
So many presents were given to us Flowers from IOSH I just havent had time to open the resents as I want to make sure i have everyones names to send thankyou notes. I will do that as we relax today.
Everyone knows how happy we are they were there to share the day but there is one man I would like to thank. He is the man that nominated us as he is such a fan our ours. he is a quiet shy man who has popped up at so many conferences and Meetings through this 10 year journey
Dr Mckenna obtained his PhD from the University of Kent in 2005, and in 2011 completed the Postgraduate Certificate in Higher Education. He has previously been a visiting lecturer at City University London, Middlesex University, the University of Surrey, and Canterbury Christchurch University.
So Thank you again to everyone who helped to make the day run so smoothly and it was lovely to have mesowarriors join in the with us as well. Good luck to you as I know you are all on trials  A huge thank you to Lisa Goldsworthy Partner and Mother and Father for the donations from her funeral. That makes me feel so humble. She was a wonderful School Teacher in my local school here in Whitstable and I will make sure one of the Research Grants are in her name and I will fight the cause of Asbestos in Schools. She was so young and leaves a 2 very young children. That is criminal.
Joanne’s Photos