Saturday, 31 October 2015

QBW251 - when is publicity too much?

This isn't an attack on anybody, nor should this be used as an attack.

Someone made a comment about whether or not I should quiet things down on the publishing front about the trial of QBW251 in case it turns out I've created all this hype when it could be I'm on the placebo.

Although I can see where they are coming from, what I highlighted was I made it clear from the beginning nobody knows if I'm on the drug or placebo.

All I can do is guess merely by the effects the drug is having that I could possibly well be on the actual drug.

Although there is a 50% chance I'm wrong, I have felt subtle changes since I started this trial, which could indicate I am not on the placebo.

Whether I am correct or this is by chance is another matter.

The fact the trial is ongoing to me is the main thing.

Whether or not I'm on the placebo doesn't matter. It's an unknown journey for me and I love sharing this journey with you all.

We all know there are drugs out there already for other genotypes doing the same work.

What we need to do is raise awareness about Cystic Fibrosis, its effects on the CF community and the importance this trial will have on our lives.

It's about time CF got exposed as it seems to be something not enough people know about.

QBW251 - Breathing easy in Whitby

It's been a week since I last put fingers to keyboard for updating people with the goings on in the QBW251 trial. So what has been happening? I hear you all say.

Here is a lowdown of events from day 6 to today (day 12)...

DAY 6 (Sunday, 25 Oct 2015)
Earlier this week I reported I had a sensation in my lungs and sinuses as though they were clearing themselves more.

Today at around 2:30pm whilst doing a workout at the gym, I noticed I was breathing easier than normal as I pushed the weights.

Could this be further evidence of me being on the drug and not the placebo or coincidence?

Although the only people to confirm this are those in charge of the trial, the effects I'm experiencing do bring me hope it's not a coincidence and the drug is doing as it should.

Again time will tell. In the mean time, one can't help but be excited by all this. It's about time the Cystic Fibrosis community had some form of hope of a better life thanks to modern medicine.

DAY 7 (Monday, 26 Oct 2015)
Today I had an appointment at Wythenshawe Hospital in regards to the drug trial. Basically to see how things are ticking.

Weight: 67.1kg (up by 1.3kg since trial started).

FEV1: 2.06; FVC: 4.52 (normal readings - question is, should this have gone up as result of drug working?).

The best part of today is the nurse was able to take blood samples first time. Yay!

DAY 12 (Friday, 30 Oct 2015)
Last day of holiday in Whitby.

Today I went to Whitby town centre and climbed 199 steps up to Whitby Abbey.

Guess what?

No breathless feeling.

Could this be another sign of drug working?

Or has doing fitness for the last couple of years paid off?

Again only time will tell.

Saturday, 24 October 2015

QBW251 - Warrington Guardian article from Saturday, 24 October 2015

Adam Everett, Reporter / Saturday, 24 October 2015 / News

Cystic fibrosis sufferer holds back tears as he tries breakthrough drug for the first time

Peter Trengove is taking part in the trial
of a new drug called QBW251

QBW251 could help reverse the effects of Cystic Fibrosis

A CYSTIC fibrosis suffered held back tears of happiness as he tried a new breakthrough drug for the first time.

Peter Trengrove suffers from the life-shortening inherited disease which is caused by a faulty gene, but the 36-year-old has become one of the first people to try QBW251 – a drug which could help reverse the effects caused by cystic fibrosis.

The Woolston resident has reported no side effects thus far, with people in the USA and Australia watching on via Peter’s live blogging of the trial.

On the blog Peter describes how he held back the tears as he tried the drug for the first time and described it as a new dawn.

Cystic fibrosis causes respiratory and digestive problems and the disease claimed Peter’s older brother’s life at the age of six, while Peter himself nearly died when he was just three days old because of it.

He said: “There’s a real excitement in the cystic fibrosis community about this drug.

“Since I started telling people on Facebook about this trial I've had people from the UK, USA and Australia contacting me asking about the trial drug and wishing me the best of luck.

“No one knows what’s going to happen so all eyes are on me for answers of this historic breakthrough - I feel I’ve become a celebrity.”

To keep up to date with Peter’s trial go to

QBW251 - Day 5: scent sense

I had an interesting morning today.
I woke up at 8:30am with a headache slightly worse than yesterday.

Holly (my Cocker Spaniel) was lay beside me sniffing at my face.  It was as though she could smell something new about me.  As though she was detecting the drug working.

I once read about dogs and cats being able to sense things.  Whether a coincidence or she is picking up changes to my body as a result of this drug...this gets more interesting by the day.

At 8:45am I had a yogurt and then took the drug with water.

By 9:00am the headache subsided, which shows the importance of the water intake as instructed.

Friday, 23 October 2015

QBW251 - Placebo or not Placebo?...that is the question

DAY 2 (Wednesday, 21 October 2015)
Well, so far I've had no side effects or any other effects from the drug...though there's still time.

This was the first thought of today. However as the day passed, things started to happen. Whether a coincidence was another question.

At 11:20am I had a sensation in my lungs and sinuses as though they were clearing themselves more. I could feel what felt like thick mucus making its way up and out. However I chose to remain skeptical, though thought it was worth noting as feedback for my next study trail visit.

I was in CF clinic at 2:00pm. All is looking good. Effect of drug hasn't shown in lung function. Though its early days yet. The drug will probably take approx 4 days before effects, if any, are noticed. Whether I will notice them without tests or not is yet to be known.

I talked with the Doctor about the Kalydeco video I shared in an earlier post. I mentioned to him that over the years of being asked what CF is, I found it hard to put into words what it's all about. However having watched the video, this made CF so easy to understand and for me to describe the basic function that I'm surprised a drug like this hasn't been found much much sooner. This made the Doctor laugh.

Obviously had the human body been mechanical, switching on the faulty gene would be a lot easier.

DAY 3 (Thursday, 22 October 2015)
At 9:10am felt a little sick, which lasted approximately 3 hours...maybe a coincidence, but this is one of the side effects of taking QBW251.

No other side effects were experienced.

DAY 4 (Friday, 23 October 2015)
Weight 65.7kg.

The staff found it astonishing that I was able to take 6 tablets in 1 go.

When I said I'm use to swallowing a good mouthful, they started laughing. People have such filthy minds when they're around me! LOL

At 11:50am whilst at work, I started to feel a little sick again like yesterday.

At 1:50pm I started with a mild headache - another known side effect. Followed 5 minutes later with slight dizzy feelings.

Again maybe coincidence, but today I've had 3 different known side effects to the drug.

Whether signs this is THE drug or is the placebo and a coincidence is another matter.

Tuesday, 20 October 2015

QBW251 - Day1: The First Dose

Here is an account for what happened today:
7:30am Arrived at the hospital.
7:50am Oximeter check done.
8:00am Paperwork check done.

Took 2 attempts to get cannula in.

Cannula put in and bloods taken.
9:10am Ate toast prior to first dose.

I never thought how much this trial would affect me mentally.

 So many thoughts and emotions to deal with.

 It's lovely to have so many supporters.

What's more is, the support is worldwide.

I'm overwhelmed.
9:25am I'm staring at the new drug! Holding back tears here.
9:30am Final checks are being made prior to first dose.
9:35am I've seen the tablet. It's a capsule. Looks like the blood red capsules similar to Rifampicin, but probably same size as creon.

The nurses are counting the capsules to make sure all is present and correct.
9:45am First dose taken. I'm cured...or am I?

Placebo or not placebo, that is the question.
10:00am First blood sample taken.
10:15am Second blood sample taken.
10:30am Blood pressure and pulse rate taken.
10:40am ECG done.
10:45am Blood sample taken.
11:10am I've lost count to how many people are following me today.

This has gone viral in USA and Australia as well as UK.
11:30am Blood pressure, and pulse rate taken.
11:40am ECG and blood sample taken.

Mmmm yummy...this didn't last long!
Lunch time...chicken roast.  Mmmm!
12:45pm Blood sample taken.
1:30pm Blood pressure and pulse rate taken.
1:40pm Blood sample taken.
1:45pm Urine sample taken and physical examination done.
3:30pm Blood pressure and pulse taken.
3:40pm ECG done.
3:45pm Urine sample taken.
4:00pm Tuna salad baguette "snack". Yummy!
6:00pm Allowed home.
This concludes the first day of my trial.

How do I feel?

On top of the world!!!

Monday, 19 October 2015

QBW251 - Day -1: Baseline

Checking myself out - wit woo!
I woke up at 5:40am to the alarm of a clock coming from within a dream I was having. Typical. 20 minutes before my real alarm clock was due.

Ah well, at least I was up early and not late...that would've been another story.

I quickly showered and freshened myself up ready for the big day.

Clothes were laid out ready and a quick look in the mirror at me, as I am now, before I set off to a new life.

I left the house to a dark neighbourhood. Everyone still sleeping as I got in my car and silently left the area to the Medical Research Unit at Wythenshawe.

As I joined the network of traffic on the M6, I compared the motorway to an artery, it's travellers as the blood cells giving life to the island on which we live, which ironically is shaped like a begging dog.

I listened to an assortment of TV themes I downloaded. All of which I found symbolic to this day.

As I drove to Wythenshawe, I watched the sky turn from black to purple to blue. A new dawn, a new day, a new life (must write a song about that).

I parked outside the centre and entered the building which would help set a new life for the CF world.

As the staff were setting up to start today's tests, I was informed I'm the only CF person in the world on this drug trial at present.

I was told the recruiting for this trial is ongoing for taking on more CF volunteers, so WATCH THIS SPACE!

Here is an account of what happened today:

7:30am Completed "Quality of Life" questionnaire.
7:50am Weight 66.7kg (gained 0.9kg since last visit).

Temperature and blood pressure done.
8:15am ECG done.
8:30am Urine sample done - they're always taking the piss! LOL
9:00am I did the breathing tests again.

On this occasion towards the end of the first test, my mouth opened slightly after being told not to release my lips from the mouthpiece. Had to repeat the test. Oops!

Though I passed the test - I can breath! LOL
10:20am Lung function FEV1 2.08; FVC 4.51
10:30am Sweat chloride test. Sensation feels like pins and needles.
11:30am Sweat test complete.
11:45am Bloods taken...took 4 attempts. Ouch!
12:54pm All done for the day. Having lunch and then going home.

Sunday, 18 October 2015

QBW251 - Warrington Guardian artcle from Thursday, 8 October 2015

QBW251 - last thoughts before Day -1

Since the announcement was made that I'd be taking part in this drug trial, I've had many interest from many people.

It's strange really. I expected there to be interest from other people in regards to this trial, but I suppose I didn't realise how big the interest would be.

I was asked the other day how do you feel about taking part in this drug? An answer to which came about whilst I was at work having a quiet moment as I went about my duties.

I'm going through all sorts of emotions.

There's so much to take in and accept at present.

Since birth I've been used to my condition and over the years I've heard in the media of many breakthroughs towards a cure to CF. Most of which were, well, not utter rubbish, but signs of a better understanding of what makes CF tick, which would benefit progression of finding better treatments.

I didn't really know this type of treatment would become a reality in my lifetime. I thought I'd be dead well before something like this would come to life.

How wrong was I?

I said before there are eyes watching my every move on Facebook waiting for a new blog to be written.

There are CF people out there who are on the edge of their seats as they wait for me to write the blog longed to be seen...what effects am I feeling from taking this miracle drug?

Even I feel teased by this question. I don't even know if I will have the actual drug or a placebo. No one will know if I've had the drug until the trial is complete.

The only answer I will be able to give is, basically, let's see what happens.

Will I feel any effects?

Will I be on the placebo and any the effects would be by sheer cruel coincidence and all psychologyical?

Will the effects be due to me being on the actual drug?

What if nothing happens at all?

Many questions...all of which I'm having to keep myself busy so not to think about any of this.

With people at work when I've finished my shift at 2pm, if my best mate is available, I'd give him a call or Facetime and talk about anything just so my mind is focused on something other than wondering the answers to the questions above.

Don't get me wrong, I am excited about this life long wait of a drug that will make living with CF a lot easier.

I simply want everything to go really well and for this trial to result in many, who like me, have waited since they were born for a drug lke this to be available on the market so we can all breath easy.

In the mean time, all I can leave you with for now is in 36 hours time, I will probably be taking the first dose of QBW251.

Monday, 5 October 2015

QBW251 - 2 weeks to go...

2 weeks to go before I take the first dose of what could be a "history in the making" drug.  I'm rather excited about this.  Mind open and faith in medical science strong as I'm confident all will go the way it should.

The attraction the news article has brought on Facebook has seen people from Warrington, Manchester, Birmingham, and even Melbourne, Australia. Mainly friends and relatives, but also a few people I've never seen before wishing me all the best with this trial.

I sort of feel like a celebrity. I'm even tempted (as a joke) to put on Facebook "signed photos £5 each". Perhaps lick the stamp for the envelope and mark it as "almost cured DNA"...oh hang on, stamps are self-adhesive nowadays aren't they? Hey ho...another money making idea out the window.

I truly do hope the blogs I've been doing plus the article will encourage other CF people who fit the criteria to come forward and volunteer too. I feel this is an opportunity not to be missed.

Anyone interested and thinking about doing this trial, but have concerns, please don't hesitate to either ask me or your CF consultant. I've found the staff very supportive.

Well? What are you waiting for?

Friday, 2 October 2015

QBW251 - Warrington Guardian article from Friday, 2 October 2015

You've all probably seen this article by now. Though in case you haven't:

Adam Everett, Reporter / Friday, 2 October 2015 / News
Cystic fibrosis sufferer trials breakthrough drug

Peter Trengove will trial a new drug called QBW251,
which he says he has been waiting for all his life.
A CYSTIC fibrosis sufferer will trial a new breakthrough drug that he says he has been waiting for all his life.

Peter Trengove from Woolston suffers from the life-shortening inherited disease which is caused by a faulty gene.

This faulty gene controls the movement of salt and water in and out of cells, meaning that the lungs and digestive system of cystic fibrosis sufferers become clogged with mucus – making it hard to breathe and digest food.

Peter’s older brother Paul died of cystic fibrosis aged six, and Peter himself nearly died at three days old because of the disease.

But now the 36-year-old will trial a new drug called QBW251, which could help reverse the effects cause by the faulty gene and become the closest thing to a cure for cystic fibrosis yet.

Peter, who has a prescription of 15 medications to battle the disease, said: “The condition can cause life-threatening lung infections and serious digestive problems where reduced absorption of fats and proteins results in vitamin deficiency and malnutrition.

“It is one of the most commonly inherited chronic lung diseases in children and young adults."

“The affect cystic fibrosis can have on a person’s life depends on the strain – in my case I have a mild strain on both lungs and digestive system whereby you can’t tell I have cystic fibrosis."

“Although I lead as normal a life as possible there have been occasions in my life whereby even I nearly passed way from severe illness."

“The earliest age was at three days old following a major operation to remove black sticky stools from my bowel – this left me seriously ill whereby it was touch and go."

“Luckily I’ve lived to tell the tale."

“Other cystic fibrosis people with a more severe strain could spend what feels like most of their life in hospital."

“They could find it hard to secure a job due to how ill they are, find it hard to keep their weight up, be on intravenous antibiotics, be on oxygen or sadly die at a young age."

“Whilst I was attending a health check I was approached by a nurse who told me a trial study of a new drug was taking place whereby the drug worked with cystic fibrosis of my genotype."

“I was later given further information once I showed interest in taking part whereby I was delighted to find out it was a breakthrough I had waited a lifetime to see happen."

“In my parents case they’ve been waiting 44 years as they lost their first son Paul to cystic fibrosis in 1977 at six years old."

“Cystic fibrosis doesn’t only affect me, but my parents will have suffered sleepless night worrying about my health in times when I was ill.”

“Should this drug work this will have a huge impact on over 10,000 cystic fibrosis sufferers who regularly face the risk of chronic lung infections and spend a lot of time in hospital as a result.”

If you have Cystic Fibrosis or know of someone with Cystic Fibrosis and interested in taking part in this study, contact 0800 655 6553 for more information.