Clinical trial – Page 2 – Wozzers Journey with Cancer

44 – Tribulations before the Trial

10th July 2023

Well, from not having much to write about over the past few months – the past couple of weeks or so have given me a fair bit of material for updates.

In my last post, I mentioned the possibility of joining a clinical trial in London. It took a couple of months from Dr Grant’s referral to the appointment being made for me on 22 June at The Royal Marsden Hospital in London. This is for a pre-screening consultation, so see if I fit the strict parameters for inclusion in a particular trial.

The Royal Marsden https://www.royalmarsden.nhs.uk/about-royal-marsden/who-we-are is a specialist hospital dealing with solely with cancer treatment and cancer research. It’s in the top 5 cancer centres in the world.

Good enough for Wozzer to at least check it out. 😉

I was to see a Professor Kevin Harrington, who is in charge of this trial and also considered one of the top Head and Neck Cancer specialists in the country – if not worldwide. https://www.icr.ac.uk/our-research/researchers-and-teams/professor-kevin-harrington

And what should have been an easy day in London and find out all about the trial, became anything but.

I’d booked a train from Gloucester to London and then planned a cab ride to the hospital. I’d given myself an extra hour leeway, just in case of any delays – not knowing that I’d be the cause of the delay!

I parked my car in the station carpark and it’s just a simple 20 or so metre walk to the station hall. I felt a bit lightheaded and unsteady. As I got to the ticket barrier, bang – down I went.

Completely collapsed right there in the ticket hall.

And of course, I went down pretty heavily – back of head hit first on the stone floor. I was awake, but bleeding and with a very sore head.

The paramedics arrived, assessed me in the station – hooked me up to a saline IV drip, ECG and all the works – before taking me to hospital in Gloucester where more checks and a CT scan were done, finally letting me home late that night.

The medics concluded it was a combination of low blood pressure (down to 80/50), lower than normal oxygen in blood (around 92%) a bit of dehydration and general malaise because of my overall condition.

I reckon I just need to be a bit more liberal with the tonic water in my gin 😉

Anyway, now I know – I know. So, I’m better prepared when I go out and watch for the warning signs.
Finally, after three years, I've had to admit to myself, there might just be something up with me!

I'm placing on record huge thanks to the Great Western Railway staff – Naomi, Sarah and Daniel, who went beyond the normal call of duty to help me!

The appointment at The Royal Marsden was rearranged to the following week and that’ll be the subject of one of my next posts – due very soon...

43 – Trials or Tribulations

20th June 2023

Oh my word – I didn’t realise how long it’s been since I last wrote a blog post. A few kind people have contacted me separately to see if I’m still er, around.

And yep, I sure am around. Although the going has not been easy these past few months and I've found it a bit difficult in what to write.

To catch up – I’ve now been through 8 cycles of immunotherapy and unfortunately CT scans are indicating that the treatment isn’t having any real effect on the tumours. In actual fact, the latest CT scan is showing that my tumours Tom, Dick and Harry are now coalescing together into one mass (or bulk soft tissue) as they like to call it.

Which isn’t particularly good news – although not all bad right now because still not showing any further spread, it’s seems I’m entering a new phase, entitled ‘Disease Progression’.

Well, to a simpleton like me, it’s all been progressing for the last 3 years. But to the medics it’s all expected, when the first two lines of treatment (Chemotherapy and then Immunotherapy), haven’t been successful.

So right now, we’re at a bit of a crossroads in terms of what’s next.

There is the possibility of joining a clinical trial of some new treatments under test conditions. I’ll be finding out more about this over the next 2 or 3 weeks. From prior experience looking at trials, there are a number of known unknowns and indeed unknown unknowns. So quite a lot to consider before leaving the care of my dear Dr Grant and entrusting others, most likely at a hospital in London.

The other – and seemingly only choice, is a 3rd line chemotherapy with Docetaxel, which is a pretty aggressive chemo drug. Scraping the bottom of the test-tube, kind of thing I reckon😉
But at least this would be with Dr Grant and his superb team here in Gloucestershire

Anyway, I hope to find out more soon about both and then will have to decide on a route.

In the meantime, now that Tom, Dick and Harry and joining together into one mass (so to speak), I’ve been giving thought to a new name for it.

After just a few nanoseconds of brain strain, I’ve decided on Big Dick as the new name for my right-lung soft tissue thingy.

Absolutely not to be confused with any other soft-tissue thingies.

Make a note people 😊

Until next time…
Stay safe
Woz

33 – Testing, testing…

31^st March 2022

Wow, how time flies.

Looking back through my blog – it’s exactly 2 years to the day that I went to my local hospital with a bit of a sore throat. Mind you – it’s not a date I’d ever forget anyway!

I find it interesting to look back at the phases – from the shock of initial diagnosis in 2020, through the aggressive radiotherapy and recovery, to the ‘living with cancer’ phase of 2021 and now the palliative treatment phase due in 2022.

I have to say that right now, the issues are far more mental than physical.

Outwardly I look fine and generally feel okay – well, apart from breathlessness and a nagging back pain. Both are the result of the Tom, Dick and Harry tumours. They were stunted in growth when given a good zapping of radiotherapy a few months ago, but the little bastards are telling me that they’re finding a way to recover and annoy me further.

Inwardly though, it’s becoming more of a constant daily, hourly reminder that all is not well with me. While I try and only worry about things I can control, rather than things I can’t – this is for sure becoming more difficult with a poor prognosis and a generally uncertain future.

Still – as we all seem to say these days, it is what it is 😉

On the diagnostic front, there’s been a fair bit happening in these past couple of months or, but no firm decisions right now on the best way forward.

What we do know is that 2022 will see more treatments, just to relieve and hopefully slow the development of the current lung tumours and of course, any further spread to other organs.

And I’ve been a bit overwhelmed with the choices that might be coming my way.

It could be chemotherapy or immunotherapy or a combination of both or indeed, experimental trials.

I’ve started the pre-screening for a clinical trial involving a new type of vaccine combined with an immunotherapy drug. It sounds quite exciting, but of course there’s a few ‘buts’

It’s quite experimental, known as a ‘phase 2’ trial.
This means it’s got past a small sample of patients (generally with very advanced cancer) in a Phase 1 trial.

Phase 2 trials generally aim to find out:

if the new treatment works well enough to be tested in a larger phase 3 trial
which types of cancer the treatment works for
more about side effects and how to manage them
more about the best dose to give

This particular trial is being tested on around 190 volunteer patients in 10 countries.

It’s known as a ‘double-blind, randomised’ trial to test this new type of vaccine treatment combined with an immunotherapy drug that’s been used in the past for a similar type of cancer to mine.

The randomised bit is that 50% of the patients get the real vaccine and 50% get a placebo vaccine. All patients do get the immunotherapy drug though.

The double-blind bit is that neither the patient or the people delivering the treatment, know (or certainly won’t say) who is receiving the vaccine and who is receiving the placebo.

So all in all, this is really about the drug companies testing product combinations for possible future wide-scale treatments, using the latest ideas around. For the patient, it’s a gamble as to whether there’s any additional benefits – and by this, I mean survival time against more shall we say, the more conventional types of chemotherapy or immunotherapy.

Although, this trial might just be the ‘miracle cure’ that the world has been waiting for!

I’ll be discussing all my options during April with both the clinical trial team in Somerset and my own Dr Wozzer here in Gloucestershire. Pretty sure one way or the other, I’ll be having treatment before the summer.

Immunotherapy is definitely the hot subject in the oncology world right now. I’ll research and then write up some more on this, hopefully next week.

Until then – take care x