Nivolumab

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

42 – End of the Line

21 February 2023

Fortunately, the title refers to the end of my PICCadilly line, and not to me personally!

Because I’m now on one immunotherapy infusion every 4 weeks, I had to balance the nicety of no needles for bloodwork and infusion, against the requirements of keeping a PICC line in place.

In-place means weekly visits to my local nurse clinic to have the line flushed and dressing changed. Also of course, keeping it secure and dry all the time – especially when showering etc.

Removing it, means I don’t have to do all of the above, but now have conventional needles for blood sampling and a canula fitted each time I have an infusion.

It was a decision that on balance I went with the line removal and for now, just a monthly jab or two. In many respects I had grown quite attached to my line – or indeed how it was attached to me!

Here’s a couple of photos; of my line from a few months ago when in-place, and another of its approximate route when it was in me.

I’m still really quite amazed how that 55cm tube was inside a vein for so many months and never caused any pain or problem.

55cm long PICC line

So now I’m back to ‘old skool’ – having a canula inserted for each infusion. For those of us like me, who have difficult veins – I rely on nurses that are also good darts players, because their aim is normally so much better 😉

But actually, the good ol’ NHS has a more scientific solution that helps the nurses – the Air Glove.

This is a hot-air blower, which attaches to my arm and provides three minutes of hot air (as if I need any more), to make my veins more prominent and therfore easier to jab with a canula.

Here’s a video for those interested in seeing how this works in practice.

So that’s about all for now.

Oh – just a quick update on treatments. So, I’m still on monthly infusions, but it’s too early to say if the treatment is working, or not.

The plan right now is to have two more immunotherapy infusions – one in March and then again in April. These will be followed by a CT scan, to determine if the treatments look like being successful, or back to the drawing board…

More from me, most likely in April.

Until then – wherever you are in the world, stay safe and well x

 

 

41 – So what’s this Immunotherapy all about?

23 December 2022

They say one shouldn’t spend too much time on the internet trying to find out about cancer treatments. And on the whole, I’d say that’s pretty good advice.

Unless you’re Wozzer that is!

Unfortunately, I have too much time on my hands these days, so checking stuff on the web is right up my street.

And when Dr Grant discussed my new immunotherapy treatment, with a drug named Nivolumab (brand name Opdivo), of course I had to check it out on Wikipedia: https://en.wikipedia.org/wiki/Nivolumab

I’ll admit to not understanding most of what’s written, but one line certainly grabbed my attention:

‘It is made using Chinese hamster ovary cells’.  Blimey!   Really?

Of course, I’ll roll with it – if Dr Grant says it’s fine, that’s good enough for me.

Immunotherapy is completely different to the more well-known Chemotherapy. The key difference is in the way that they ‘target’ cancer cells.

Here’s my simple understanding:
Our bodies are comprised of literally billions of cells, that provide the complete structure of how we are and how we live eg, nerve cells, blood cells, muscle cells and more. They’re all working 24/7 and can repair themselves if things are going wrong (viruses etc). They can die and duplicate so that new cells replace the dead ones.

Sometimes though, in some people – cell structures can become damaged inside and they start to duplicate uncontrollably, growing as cancerous tumours.

And even worse, they can spread to other parts of the body and begin to grow and develop in or on other organs, known as ‘metastasis’.

And if those two statements are not bad enough, the ‘metastatic’ cancer cells can send signals to our body’s own immune system (antibodies) to stop trying to fight or ‘cure’ them. Which is what makes cancer so scary, because by this step – the cancer is usually incurable.

So, Chemotherapy attempts to reduce the uncontrollable cell-splitting duplications, but unfortunately can and does stop healthy cells from duplicating too. This is why there are generally such severe side-effects associated with this type of treatment.

Image credit: https://www.opdivo.com

Immunotherapy takes a more subtle and technical approach. It trains / stimulates (or boosts) our own immune system to ignore the ‘I’m friendly’ signals from cancer cells and to attack those cells in any case.

To date, I’ve just finished my 3rd infusion of Nivolumab and now have one just one treatment per month by IV. It takes around one hour to infuse.

So far so good. I’ve haven’t had any obvious side-effects and hopefully will have another CT scan in January, so that we can get some kind of indication as to whether it’s working, or not.

But I can’t seem to get the thought of the Chinese hamster out of my mind – and how much of it is now inside me!

Image credit: Milrajas https://gifer.com/en/user/368113

 

So if anyone sees me nibbling on cheese – or even worse running on a wheel – for goodness sake, please contact Cheltenham Oncology Centre on my behalf 😉

More from me in a month or so, but until then Wozzer wishes you all – wherever you are in the world, a very merry Xmas and a happy, prosperous and healthy New Year!

40 – Cancer Scan Anxiety and Scanxiety

10 November 2022

I’d touched on the scan and especially reporting delays in my last post. And it appears to becoming an issue countrywide. One cancer patient I’m in touch with, was still waiting for his scan report, almost 3 months after the scan – and almost in time for his next scan!

So, what on earth is going on?

The system seems to be that once a patient has a scan, the images are interpreted by a Radiologist who then writes a report and forwards said report to the specialist doctor. The doctor then considers the report and decides on the best treatment for the patient.

All good and the system worked pretty well, until what appears to be a backlog due to a combination of Covid delays and lack of trained personnel.

I did a bit of delving, but didn’t get very far with my local NHS Trust. Certainly not without making a ‘Freedom of Information’ request. And I don’t have the energy or inclination, for all of that.

But, talking to a doctor recently, it’s clear that scan reporting is likely to be an ongoing issue for the foreseeable future.

As he put it to me ‘They can keep producing scanning units every day, but it takes around 10 years to fully train a Radiologist to interpret scans professionally’.

In a way then, my 3.5 weeks wait for the results wasn’t a long time in the big scheme of things, but an eternity in terms of anxiety, not knowing how things are.

And unfortunately, it wasn’t the news I was hoping for. The 18 weeks of chemotherapy didn’t shrink any of the tumours, and in fact the largest (Tom) had increased in size by some 50% from 40mm to almost 60mm. Dr Grant was also very disappointed by the results.

If there are any positives to take from this, no further spread has been detected. Whether that’s due to the chemo or just natural, is impossible to tell right now, but suffice to say that because the first-line (chemo) treatment was unsuccessful, then some careful consideration had to be given to the next steps.

These ranged from pause treatment for a few months and then scan again; use a different type of chemo or start with a course of Immunotherapy. We discussed the options and agreed to run with the latter. So later this month, I’ll be back for bi-weekly infusions of a drug named Nivolumab.

I begin next week 16th November – with preliminary checks and tests and then my first infusion is scheduled for 21st November and then every 2 weeks after that. I guess quite a bit depends on how I react to the treatment.

Dr Grant tells me that I have to be aware of anything ending in ‘itis’ (inflammation) i.e. dermatitis, colitis, hepatitis etc. This is because the drug alters the body’s own immune system and while generally well tolerated, it can have quite unpredictable and serious effects

Anyway, I’m sure I’ll learn a lot more in the next few weeks – if nothing else I’ll have lots more material for my blog 😊

So, all being well, I’ll write an update after my second cycle in December. Until then, wherever in the world you are – take care x