Esma's Journey

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I'm sharing my blog....

I felt alone battling this diagnosis but now I know I'm not alone.
I want to give people hope.
This is my story.

I got diagnosed with stage lV lung incurable cancer that spread to 19 places in my body in Jan 2014,
3 years ago at the age of 35.

My first symptom were chest pain after the birth of my 3rd child back in June 2013.

I went to see my family doctor the following day and he send me to for a scan that showed a shadow on my right lung. He said u have got pneumonia and prescribed antibiotics.
After taken them for 4 days the pain was getting worse not better.
I had a telephone appointment with my doctor and he prescribed me stronger antibiotics.
The pain did ease but it was still there after my 3rd visit to the doctors, he referred me to see a chest specialist in September 2013, I waited 9 wks to see him. I met with the specialist back end of November 2013 he was testing for all kinds. Didn't know what was wrong.
I Had 2 Bronchoscopies in the space of a week,
Then I had a CT scan,
PET scan,
MRI,
in Jan 2014 I got a call to go in that day for a second MRI.
It was my first day back at work after my maternity leave,
I left work earlier.
leaving my 7 month old and 2 yr old sons at nursery and my 15yr old at school.
After I had MRI the specialist wanted to see me.
I was alone my husband was at work. They put me In a room with a settee, free tea and coffee, A box of tissues in the middle of the coffee table, alarm bells were going off in my head as I realised it was a bad news room.

I got diagnosed with genetic lung cancer stage lV,EGFR+, Exon 19 deletion.
It had Spread to my brain, hip bones, 3 disks in spine, kidney, ovary (unbelievable)
I had NSCLC at the age of 35.

I'm on target therapy which kills only bad cells and leaves good cells alone so I can care for my children.
I take each day at a time
My children keep me going ✨

Surviving non small cell lung cancer.

I'm on a clinical trial in England. It had no name is just a number AZD9291.

I started on gyfitnib/ Irissa in January 2014
I stopped responding to the drug after 15 months

A clinal trial started on 20th may 2015.
I hit the national news paper back in oct 2016 as this drug worked its magic. Now having a name Osimertinib.
the Nhs (National health service) would fund this treatment.



❌ Latest update ❌

I had my MRI and CT scan results on Wednesday 12th April 2017....

My oncologist said he had good news and not so good news for me.

The good news is that my MRI of brain is nothing more that calcium... yipeee!!

Nothing was wrong with my brain ....

Not so good:
my right ovary seems to be swollen (which they can take out, not a problem)

Bad news:
I have a growth of 1cm in my lymph-node. my left side, next to my left kidney which they can't operate on.....

it's to close to my kidney, and blood supply. they can't do radiotherapy on it as it will damage my kidney and surrounding areas....

the good part is that I could have stereotactic tharapy on it, but the drug company won't fund it and neither will the Nhs
it costs thousands.....

My oncologists said we should wait six weeks to do another CT scan and go from there....

about Me:
I said to my husband that I'm starting to enjoy my life about 4 wks ago.

I am not the person I used to be. I've been on a journey to find my self.
Ive learnt so much about myself and I've never felt as good as I do now. I've changed my life completely and only but goodness in my body as I need to do the best thing for me....

I've found out lots of about myself.
I am never going bk to the life I had before and that breaks my heart

I've learnt that I CAN have a life with a cancer diagnosis and happy one too!! ✨

It helps me sharing my experiences with other cancer sufferers and of course EGFR+ people with same genetic mutation....

I'm staying strong and remaining positive....
Ps my oncologists mentioned that the best place to get it done is in London privately Royal Marsden .....
how money talks at times ....
I will update on here.

I'm in the process of setting up go fund me.
We will later link it to this page.
Thank you all for reading my story
Positive all the way ✨

I've attached my previous article that was on the daily mail on October 2016
lymph-node. my left side, next to my left kidney which they can't operate on.....

it's to close to my kidney, and blood supply. they can't do radiotherapy on it as it will damage my kidney and surrounding areas....

the good part is that I could have stereotactic tharapy on it, but the drug company won't fund it and neither will the Nhs
it costs thousands.....

My oncologists said we should wait six weeks to do another CT scan and go from there....

about Me:
I said to my husband that I'm starting to enjoy my life about 4 wks ago.

I am not the person I used to be. I've been on a journey to find my self.
Ive learnt so much about myself and I've never felt as good as I do now. I've changed my life completely and only but goodness in my body as I need to do the best thing for me....

I've found out lots of about myself.
I am never going bk to the life I had before and that breaks my heart

I've learnt that I CAN have a life with a cancer diagnosis and happy one too!! ✨

It helps me sharing my experiences with other cancer sufferers and of course EGFR+ people with same genetic mutation....

I'm staying strong and remaining positive....
Ps my oncologists mentioned that the best place to get it done is in London privately Royal Marsden .....
how money talks at times ....
I will update on here.



Thank you all for reading my story
Positive all the way ✨Thanks

http://www.dailymail.co.uk/health/article-3820649/NHS-pay-chance-lung-cancer-pill-Hundreds-set-benefit-tumour-busting-drug-uses-patient-s-genetics-target-illness.html