Watch & Wait

Wrapping Up R-Maint

Well, that’s been a bit of a break since the last post (again)… and a few things have happened.

Health-wise, I’ve now wrapped up my three years of Rituximab Maintenance (R-maint). And with that comes the upside of no more scheduled visits to the Centre for Shite Hair.

I say scheduled because, well… who actually knows, right?

The prospect of more visits poked its head up ever so slightly, but mostly, that noise has faded, and I intend for it to stay that way.

The Cough Saga

I went in to see Greenwood and, after the usual “How are you doing?” I told him about a nagging, hacking, mostly-dry cough I’d had for about ten weeks — dating back to just before my penultimate R-maint visit (thats .how i could tell it was 10 weeks). He looked a bit surprised, which is never the expression you want from your haematologist.

So he ordered a chest X-ray and a CT scan. “We might as well do a scan to check everything’s fine,” he said. Just casually.

For once in my life — being the master procrastinator — I just said, “Oh, fuck it,” and walked straight across the road to the radiology place. And would you believe it? They could fit me in for a CT with contrast on the spot. Small miracles. A few hours later the images appeared on my phone, never ceases to amaze me. Now, I’ve learned enough to think I can read a PET scan, but a CT? Might as well have been ancient cave drawings. And of course, the report isn’t released to patients — only to people who actually know what they’re doing.

The GP and the Snot Sample

I finally went to the GP — partly because the cough was annoying again, finally because, well, the cost alone is enough to make your eyes water. Rightly or wrongly, he pulled up the report and showed it to me without even glancing at it himself. And there it was in bold:

“No lymphoma above or below the diaphragm.” “Spleen continues to show signs of decreasing in size.”

Two genuinely brilliant pieces of news. And no issues with the lungs either, go f'ing figure.

He gave me more antibiotics, did another swab, and sent me off with a sample jar to produce a… well, a snotty sample first thing in the morning. “From as deep as you can muster,” or words to that effect. The antibiotics seemed to help, and Kerry and I were up walking at 5:00 a.m. most mornings during September thanks to bloody Steptember. The cough was just a wee hurdle to navigate each day. ALthough i did manage over 210kms walking that month.

About ten days later, the cough came back. But this time, I managed to produce a sample of my own snot — which, frankly, I was a little impressed with — and sent it off to the lab. Next day, a call from the GP: “Come in immediately.”

Apparently, snot can be impressive if you bottle it correctly. Who knew?

Pneumonia Surprise

Turns out I had pneumonia from Haemophilus influenzae. Sounds dramatic, and, well, it felt it. But my penchant for melodrama was promptly crushed when the GP explained that most people carry this bug asymptomatically. It only caused a problem because, well, my immune system is a bit shall we say buggered.

A different antibiotic — Ciprofloxacin, something I’d had during chemo — was prescribed. And literally within 48 hours, I could feel a difference. A few days later, I bumped into the GP and was elated to tell him the cough had gone. He was chuffed. As was I.

Alas, the cough quietly returned — tightness in the chest, a wee bit of snot in the mornings — so back I went for a second, stronger course of Cipro. Things seem to be on the mend, though I’m only on day three at time of typing. But I took a day off work to avoid well....nothing, not avoid anything....I just couldnt be arsed with the commute to be frank and turning over in bed seemed better.

Lungs and I are now on a tentative “truce,” subject to revision.

Greenwood and the Scan

Amid all this, I had a recall with Greenwood to discuss the scan. He confirmed the great news — no lymphoma. He seemed genuinely surprised when I told him it was H. influenzae, though his surprise was short-lived as he quickly got back into his usual, efficient groove.

"I’ll see you in four months, Innes," he said. Not the six-month recall I’d been quietly hoping for. He went on to discuss what happens when I relapse — note, not if — and, curiously, CAR-T was mentioned again.

“When, not if.” Cheeky way to keep me on my toes.

A Shifting Treatment Landscape

You see… in the relatively short time since my diagnosis — about three and a half years, give or take — things have changed, well to me it seems anyway. CAR-T used to feel like a last-resort treatment, reserved for the worst cases (at least, I think; I hope I’m not misrepresenting it). And there seems to be a growing sense that maybe my treatment plan (NORDIC/BEAM/AutoSCT/ 3y R-maint) wouldn’t even be offered to cases like mine in the first instance.

It seems “better” treatments are being favoured — probably because the toxicity profile is more manageable. After all, NORDIC is a sledgehammer. I’m not phased by that. Science decides what it decides. But if the sledgehammer isn’t the first approach anymore, that’s good news for the newbies. NORDIC is a f'ing PUNISH of epic proportions.

Greenwood sent me off with my four-month recall. Just like that, I settle into a new routine: no more blood tests, no scheduled hospital visits, no scans — just seeing him in March. “Just get a blood test a couple of days before you come in, Innes,” he said. And that’s it. The noise of R-maint, the regular blood tests, the trips to the Centre for Shite Hair — all of it has quietened down. I suppose this is what’s known as watch-and-wait. I hear of others on watch and wait, which is what happens to some if they are diagnosed early enough when the disease burden perhaps doesn’t warrant immediate intervention (my words). But this is just the same, right? Waiting for it to progress to the point where its needs more treatment or more intervention.

“Watch-and-wait” sounds boring. It’s really just quietly plotting to ignore the bogeyman.

Quiet Time

If chest problems persist, I may have to have six infusions of IVIg — Intravenous Immunoglobulins, thats the prospect of 6 infusions I mentioned. I’ve had them before and, honestly, I’d prefer not to. More visits to the CfSH is… less than ideal. But if they’re needed, they’re needed.

So, it’s some quiet time. Sealing the box (or envelope) in which my Cancer Bogeyman lives, shoving it somewhere on a shelf in my mind, and trading it for as much forgetting as I can manage. Maybe even trading that mind space for some optimism. I find myself thinking, that i moght be one of those with a long, durable remission. All of it as we race toward the festive period.

Bogeyman lives rent-free. I’m just subletting the space.

Looking Ahead

Even though Mantle Cell Lymphoma is considered rare, there’s still research afoot and developments aplenty. CAR-T just wasn’t discussed with me before, and now it’s been mentioned twice. Maybe that’s because, were I to relapse, it’s the next step anyway. But I can’t shake the feeling that the treatment landscape has changed a lot in the past few years.

It seems that, while there are recurring remission–relapse cycles, MCL is now quite treatable for many people and can be managed well. Of course, for others, the outcomes are far more dire — and that’s what makes it so hard. Am I someone who’ll get a second, third, or even fourth chance? Or will my next relapse be the one?

Until that day, it’s watch-and-wait for me.

And so ends the latest chapter — quiet, cautious, optimistic