Monday, 16 November 2015

QBW251 - Day 28: second to last

Today was my second to last visit to the hospital in regards to the drug trial.

The visit consisted of:
  • Body weight/BMI
  • Vital signs
  • Body temperature
  • Urine collection
  • Blood sampling
  • Lung function
  • Sputum sampling
  • Sweat chloride assessment
  • Pulse oximetry
  • CFQ-R questionnaire
In 2 weeks time I will be attending my last visit to the hospital.

This has been what feels like a short journey for me. Simply because I'm a very busy man and time flies when you're busy.

Though as I said, I'm pretty sure there will be more to say on this trial in the months to come.

As an interesting last word to today's news, through making friends with many members of the CF community around the world, I've had many good conversations with people who ask how the trial is going.

One conversation lead to the interesting mention that for CF people with the F508del mutation, there is a drug on the market called Orkambi.

Information about this drug can be found on this website:

There is a video on the website that elaborates on what this drug does.

Sunday, 8 November 2015

QBW251 - Day 17: getting more interesting by the minute

Thursday, 5 November 2015
You may recall that on days 2, 3 and 4 of taking QBW251 I started to have some form of effect in one way or the other.

Whether this was side effects such as feeling sick or having headaches, or other effects such as having the feeling my sinuses were more clear and able to breath better whilst exercise, this gave me some form of indication the drug was doing its job...or maybe a coincidence? Who knows?

Now today (day 17 into the trial; day 3 of coming off QBW251), I've started to have effects as the drug is making its way out of my body.

I noticed a slight increase in coughing in particular first thing in the morning.

Day 20 (Sunday, 8 November 2015)
Today I've been to the gym to do a chest workout. Breathing is as normal as it was when on QBW251.

Is this an indication the drug is still active in my body?

Could it be that in the last month I've simply become stronger and the effect of the drug be a coincidence?

I have 2 more visits to the hospital in regards to the trial:
  • Day 28 (Monday, 16 November 2015)
  • Day 42 (Monday, 30 November 2015)
And then...drums rolling here...3-4 months after the final date, I will know whether or not I had the placebo and results of the various tests I've had during my 42 days.

Monday, 2 November 2015

Cystic Fibrosis & Fitness: Part 2

It's been over a year since I last wrote a blog about CF & Fitness.

What a year it has been too.

In October 2014 I was doing the following program:
Exercise Weight (kg) No of sets Reps per set
Workout 1
Incline dumbbell bench press 12 4 8-12
Chest press machine 25 4 8-12
Incline dumbbell fly 10 4 8-12
Overhead extension 12 3 10-12
Cable rope press down 12.5 3 10-12
Cable kickback 2.5 3 10-12
Workout 2
Leg press 50 6 8-12
Leg extension 30 2 8-12
Leg curl 30 2 8-12
Dumbbell shoulder press 10 3 8-12
4 3 8-12
Workout 3
Vertical traction 35 4 8-12
Dumbbell row 10 4 8-12
Underarm barbell row 25 4 8-12
Dumbbell row 8 3 8-12
Cable curls 12.5 3 8-12
Hammer curl 6 3 8-12

In addition to this I also did cardio choice of rowing, cycling, jogging or swimming.

In 2015 I started working in a retirement home, where my physical activity level rose considerably.

Physical activity has gone from:

37 hours low activity job and 3 hours workout in the gym per week


25 hours high activity job and 3 hours workout in the gym per week.

A BIG difference eh?

As a result of this, I've had to decrease the weights used in my workouts slightly and by October 2015 I noticed as I got use to my high physical activity job, I gained my strength in the gym back.

Family and friends have commented how bulky I've become as I gained strength over the last couple of years.

I've found it quite an achievement where I'm at now going from a life of no physical activity to not getting enough.

QBW251 - Day 14: bye bye QBW251

Today I had an appointment at Wythenshawe Hospital in regards to the drug trial.

The sad part of today is that it's the last day I'm on QBW251.

However this doesn't mean I'm at the end of the trial. I still have to return on day 28 and 42 for further tests...I'm guessing to see changes in the body as the drug leaves the system.

Weight: 68.3kg (up by 1.2kg since last Monday).

I've gained since 18 March 2015 6.1kg (1 stone)...amazing.

This morning a repeat of some screening tests as followed:
  • CFQ-R questionnaire
  • Body weight/BMI
  • Vital signs
  • Body temperature
  • ECG
  • Urine collection
  • Blood sampling
  • Sweat chloride assessment
  • Pulse oximetry
With the blood sampling, they had to take blood pre-dose and 2 hours post-dose.

Again they managed to take the first lot of bloods first time. Yay!

However I'm yet to wait if the second lot of bloods will be taken without a glitch.

An interesting comment made about the drug is although the tests will help see how my body reacts to the drug as it enters the system, no change in lung function doesn't necessarily mean the drug isn't doing its job. There could be a chance I've simply not been on the drug long enough for it to have an affect on lung function.

It will be strange not having the drug after my last dose tonight. However I am looking forward to "what happens next".

I would say this isn't the end of the story, but the beginning.