Posted by: rayandmave | June 4, 2014

Living With Mesothelioma -My Diary- Marsden today on our 54th Wedding Anniversary. What a present a Phase 1 Trial


I must tell you about a little Local boy who was so brave here in Whitstable.

CAPTAIN Jack Sparrow welcomed mourners to the funeral of one of his biggest fans today as schoolboy Reece Puddington was laid to rest.

Hundreds packed Seasalter Christian Centre for the 11 year old’s service, which included the theme music to the Pirates of the Caribbean film and a special pirate ‘tattoo’ for each person from the captain, a professional lookalike.

Many more lined the town centre to pay their respects as his coffin – emblazoned with images from the films including Johnny Depp’s character Captain Jack – passed by.

Two white horses pulled Reece’s coffin in a white carriage, pausing outside the Peter Cushing Wetherspoon where the waiting crowds broke into applause as it set off again.

The funeral took place exactly two weeks after Reece, of Freeman’s Close, finally lost his six-year battle with childhood cancer neuroblastoma.

Read more: http://www.canterburytimes.co.uk/Crowds-turn-Reece-Puddington-s-pirate-funeral/story-21181191-detail/story.html#ixzz33geQfWLp
Read more at http://www.canterburytimes.co.uk/Crowds-turn-Reece-Puddington-s-pirate-funeral/story-21181191-detail/story.html#lzVKJeVdyKbR2skp.99

Sleep tight little angel

mavisand ray

 

 

 

 

 

 

Well it was our 54th Wedding  Anniversary today and 5 years when I found out I had Mesothelioma so it was an excited couple that got up today and set off for The Royal Marsden.

We have to leave so early even though my appointment was 10.45 we left at 7.30 am as we never know what the M26 or M25 will be like and it was pouring with rain,

We sailed alone and then down A249 to Maidstone we met the traffic. Praying this long line wasnt all the way to the M25 we creep along. But wonderful the M20 was clear and from then on the journey was great. Called in at the service station for a wee (thank Goodness we did ) Took the turning for Sutton and Ray went round the round about and back onto the M25 again Grrrrr we went down to the next turning but thank goodness the Sat/Nav got us back through roads we have never been before.

I didnt have to wait long and I went for a blood test. Waited while that was processed. The Clinic was running 45mins late.

We were moved to outside the clinic door and sat there. OMG I was called in and a lovely young Doctor was there to shake my hand and take me through all the paper signing. I have to say the NHS is giving me some good looking young Doctors proper eye candy. he he !!!

Doctor Smith is a Canadian. I signed my Consent form for the Phase 1 Trial and also one to carry out a extra study, a sub study that Merck Sharp and Dohme LTD is the Sponsor.

It is to find out the cause s of a disease and the differences in the way that people respond to drugs that work and relate to human disease and health.

Many differences in the way people respond to drugs can be learned by studying differences in Genes which are found in DNA and Patterns of those genes by studying RNA.

The more we learn about the differences the more it will help and improve the understanding and treatment of patients.

And they use my samples to look for biomarkers. These are found in our blood and other body fluids or tissues that can be used to measure the progress of disease or the effects of drugs.

Example they can be used to look for fat levels of your blood to predict your risk of heart disease.

So they will collect samples from me  as of course I agreed.

So next week I have to go for my scan and a full medical and then if I pass all this I go for the first DRug session on the 16th June.

Then I do go every week for 2 years or as long as my body stands up to it all.

There are side effects which seem common for these new drugs. Rash (they will give me a cream for. Maybe sickness  in fact there is a long long list  but he said the drug has been used on other cancers including Skin and the side effects have been mild. They have to warn you don’t they to cover themselves.

I must tell them if I want more children –bless him he had to ask didn’t he.

Something he did say that was of interest was that if you are on a Placebo trial and so the trial fails you you are entitled to the real drug when the trial is finished if it is passed as a good drug.

I dont have a placebo  on this trial but I did on the maidstone trial i had.

The trial is inviting  375 Cancer patients around the world and Im the first Mesothelioma patient.  I can talk about it if I use all the published info so My Talk in Manchester will be more interesting for the Oncology Forum.

So thats all I can think to tell.

I will report each week after my appointments and each day of how I feel. Promise.

We stopped at Clacket Lane on the way home and had a crappy meal. Goodness I didn’t know food was served like that. What a waste of money as we neither ate it. Im usually in the Motor Home and cook something or have a Milk Shake and a Bag of chips.

I owe Ray a better meal to celebrate 54 years of marriage bless him

 

 

 

 

 

 

 

About these ads

Responses

  1. Given the dishy doctor I think you should have taken him up on the offer of children, Mavis ;-) xx

  2. Mavis, you sound really positive and confident, and as always, Rita and I wish you well, especially over the next two years. We hope you and Ray had a nice anniversary, despite most of it being taken up by the appointment and travelling. J & R. xx


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

Follow

Get every new post delivered to your Inbox.

Join 830 other followers

%d bloggers like this: