September 2023 – Wozzers Journey with Cancer

47 – Reaction to Immunotherapy

A couple of weeks ago – 12^th September, to be precise, Samros and I were back in London for another round of treatment. Samros was with me, because a few days earlier – I had another unexplained collapse. Legs just went from under me – and I went down like a sack of spuds.

I decided, for the first time ever – I couldn’t trust myself to be unaccompanied for 3 days around London, in case of any other mishap. And I’m ever so glad we both went.

The day started off at hospital as any other. I had a scheduled CT scan first, followed by the blood sampling and finally the review meeting / consultation with the research / trial doctors.

And that’s when everything changed.

“Warren. We’ve just examined the CT scan you had an hour ago and I have to inform you, that your left (non cancerous) lung appears to be highly inflamed. We need to do more tests but the strong suspicion is you have Immune-Related Pheunomitis.”

Samros and I continued listening. “This can be life-threatening and potentially life-ending condition”

“We have to pause the trial immediately and begin oral high dose steroid and antibiotic treatments, to try and control this”.

Well of course the medics had our complete attention, although we were also in a daze, trying to believe the unbelievable.

Assessed as Grade 3 – adverse event Common Terminology Criteria for Adverse Events (CTCAE)

Pneumonitis is an ‘itis’ or inflammation. The pneumo bit is of course, related to the lungs. Other similar itis’ include hepatitis, colitis, meningitis or even dermatitis.

All can be triggered by Immunotherapy treatment actually over-stimulating our body’s own immune system, in such a way that the body begins to ‘attack’ itself. It’s a known, but fairly rare side effect of treat.

I felt like saying ‘so, it might be a bit serious huh?’ But no one was smiling.

And it’s about as serious as it gets. The next 4-6 weeks will range between ‘crucial and critical'. It all depends on whether the drugs treatment can overcome the inflation’ in which I’ll prevail, or – and let’s not beat around the bush – this condition could very well take me down.

Which is pretty ironic that a man that’s survived over three years of Stage 4 cancer without too many dramas, could succumb in such a highly regulated and closely observed clinical trial, to something probably immediately worse than my cancer.

Medically, when something like this happens, it’s called an Adverse Event and are graded 1-5. I’m currently graded 3. So, I’m being treated as an outpatient, but with close observations at home and taking oral drugs. Any regress, however slight - and I'll be hospitalised.

I’m also now hooked up to oxygen at home for most of the day. I have cylinders to take with me for any outside journeys, including for my now one or two trips to London for assessment each week.

My lovey Samros has had to reduce her working hours to weekends only, so she can be my carer during the week. At weekends, Nisa takes over that role, brilliantly! This agreement (taken with the medics) is about the only thing keeping me from being taken as an inpatient into the Royal Marsden in London.

Hospitalisation needs to be a last resort for me. If I get worse, it will become a Grade 4 Adverse Event, which is being treated by IV and strong immunosuppressive drugs, which all have their own complications.

That’s about the highest grade .

Well, there is a Grade 5, but patients never know. Because that is death.

So currently, it’s fair to say we’re getting by day by day. I don’t feel so bad, but mainly that’s the high does of steroids masking my ills.

Wozzer with the must (not) have accessory. Shown here with a plug-in oxygen condenser

Breathlessness is a serious problem though and if I try and do almost anything without my medical oxygen connected, I’m feeling poorly within seconds.

This is because I've very little lung capacity to make oxygen, which is then trnsferred, via my blood cells to muscles, throughout my body. So the reason for the falling has been explained, that my brain senses a lack of oxygen and immediately prioritises oxygen to the heart.

In order to do this, the brain will cut oxygen supply to limbs etc that don't need it at that precice moment. Therefore my collapses were caused by low oxygen to the brain, whice cut supply to my leg muscles - and down went Wozzer!

47 – On Trials at Chelsea

9^th September 2023

Yes, beating the transfer deadline by just a few hours, Wozzer can reveal that he’s on a free transfer from Cheltenham Town to Chelsea. As a lifelong Manchester United fan, this took some serious thinking about 😉

Well, actually it’s really that I’ve transferred from Cheltenham Oncology Centre, to the Royal Marsden Hospital, which is just along the Fulham Road from Chelsea FC, but that sounded better!

Even though I’m one of the few people Chelsea haven’t signed recently, I can reveal there were some preliminary discussions with my agents about playing on the Outside Right, but they insisted I was better positioned Right Outside.

Anyways, back to reality. Here we are some 7 weeks into the clinical trial and so far, so good. The whole experience at The Royal Marsden has been outstanding – everyone is very organised; treatment appointment times are met and information flow from medics to patient is always up to date.

After the issue with the canula and leaking of contrast dye for the CT scan (described in my previous post) and the amount of blood sampling required going forward, I’ve been fitted with another PICC line.

While it has its inconveniences (weekly flushing and dressing changes) and keeping it dry with a special sleeve when showering, it’s so much better than stabbing my poor old veins, that have had over 3 years of needles and cause quite a few problems.

In terms of treatments – currently I have two drugs. They are both known as Immunotherapy drugs and intended to train my body to better recognise and attack the cancerous tumours, without too many harsh side effects, as in generally the case with say, chemotherapy.

Sampling blood is so easy and painless, with a PICC line

That’s not to say I get off scot-free. One of the drugs is a powerful vaccine given by injection into either upper arms (one jab in each) or thighs (again one in each). I have to say it hurts like hell for a few minutes, then subsides over 1-2 weeks- but with inflammation and pain around the injection sites.

This is definitely grown-up stuff, much more painful as any normal flu or covid jab! The other drug is intravenous, so that goes through my PICC line and thankfully painless.

The reason for using two drugs is - to my understanding – that neither is particularly strong enough to deal with the tumours individually – and the trial is to determine if the combination of two give a better result than the individual parts. Kind of 1+1=3

Currently, it’s too early to say if the trial drugs are working – this will mostly be determined by CT scans. One is due on 12^th September, which MAY give an initial indication – but my guess is the following one around mid-November will have more meaningful results.

I find it best not to speculate on possible results and scenarios– just take it as comes!

Ongoing monitoring of my general wellbeing is done each visit by way of blood-sampling (a lot of blood) and also vital signs checking and interview with the trial doctors.

All of these tubes are filled. That must be almost an armful 😉

This (and any scans etc) usually take place on the first day of hospital visit and then drug treatments are on the next day. This is now settling into a pattern of every 3 weeks. I stay overnight in a local hotel near the hospital. The drugs companies cover my reasonable hotel costs and other expenses.

So, for now – even though it’s near Chelsea, I’m pretty happy with how things are going.
More in a few weeks – or when I have updated news.

Until then, stay safe and well 🙂

Month: September 2023