09/07/2025 Confused? I am...

One thing I didn't mention about Monday's Zometa is what happened immediately afterwards. The nurse asked me to book the next one in four weeks time. No, I said, should be three weeks, that's what my consultant has said time and again. So she got all the paperwork out and yes, here's a referral for three-weekly Zometa. But she also found a later referral for four-weekly. So I made the appointment for four weeks time and when I got home I phoned Haematology to clarify. Had to leave a message, of course, no Clinical Nurse Specialists available...

On to this afternoon's chemo appointment. To my considerable surprise, no Dara this time (or next), just the Velcade. And no pills to take and then wait for an hour. That nurse checked her paperwork and yes, that's right. Even though according to last consultant conversation I should be staying on weekly Dara for weeks yet.

I can only assume that she must have looked at the most recent bloods results and decided to change the plan. Without telling me, of course, or asking me whether I'd be happy about that. After all, I'm just the patient with the incurable cancer here, how much do I count? I'm starting to wonder.

Anyway, I got a message back from the Haematology  Clinical Specialist Nurses. As far as I could understand a very crackly line, they want me to 'phone again tomorrow. So much, by the way, for digital phone "lines" improving call quality. Can't say I've noticed.

Got home from chemo and took my Wednesday dex, rather later in the day than usual. Don't know if or how that will affect my sleep tonight...

No recurrence of the "flu-like" shivering and etc.. Told the chemo nurse about it and agreed might be a reaction to the Zometa, or might just have been waking up after getting a bit cold. But no problem unless it happens again.

08/07/25 Zometa and Sandford Lock

   

Had my first Zometa infusion - all done in 20 mins or so, no problems. Very fast and efficient. Was warned about the possibility of flu-like symptoms in the first few days, and yesterday evening I fell asleep in my study chair while the window was still wide open. Woke up feeling cold and shaking. Temperature OK (36.7 rather than the usual 36.6) and feeling warmer and better and less shaky after a hot shower. Will add a couple of paracetamol to the mix later, just in case.

In the afternoon I went out to Sandford Lock, a bit of the Chelmer and Blackwater Navigation that I've avoided before, mainly because the roads are a bit tricky and I never seem to end up in the same place twice. There's some good towpath walking and lots of dragonflies to watch...

03/07/2025 Dex night

I thought last night was going to be a bit better, as I went to bed and turned off the light at about 03:30 feeling that sleep was at least a possibility. But I was wide awake again an hour and a quarter later with that absolute dex certainty of not going back to sleep again. It's now 05:50, I'm in front of the computer (again) and that'll be that for the night.

I hate dexamethasone. Can't wait to get the dose down to 10mg.

02/07/2025 Good consultation

'Phone consultation with consultant today after chemo #10 earlier. She was only two hours late...

Here's the news. Paraproteins down to 2, which is very encouraging. Free Light Chain ratio is 1.8, kappa 6.23 and Lambda 3.3 - that's all very good as well. All other blood numbers are fine except platelets a bit low but that's to be expected. Haven't got the full results through yet, they'll come by post. Eventually...

So we continue with six more 3-week cycles of treatment as at present, and she has agreed to cut the dex dose from 20mg to 10, which should help with the sleeplessness and the weekend crash. That will start with the next cycle in three weeks time. I'm reading lots of studies suggesting that lower dex doses are just as effective as higher ones, so that's in line with current thinking. After those six cycles are done she plans to reduce the Daratumumab to "maintenance" i.e. monthly rather than weekly.

All very good. I couldn't be more pleased.

26/06/25 More fatigue, and statins.

Everything is going well - now finished Cycle 3 (nine treatments altogether) and the only real problem is the fatigue that hits at the weekends. But I know it's coming so to some extent I can plan around it. But in the last couple of weeks it's been complicated by my GP surgery. I got a phone call saying they wanted to increase my statins from the very low dose 10mg daily that I've been on for years up to 20mg daily. No obvious reason, and my lipid numbers are all good so my guess is just that my age has put me into a different risk level. Needless to say the pharmacist who called couldn't give me any better explanation. So, reluctantly, I agreed. Don't want to get an "awkward patient" black mark from the doctors.

Within a few days of the increased dose the fatigue got worse. Longer, deeper, and clear muscle weakness. Walking distances I did easily a few weeks ago, like into town, round a few shops and back again (between 4,000 and 6,000 steps) started feeling like climbing mountains, like they did before I started losing the weight. Slow, terribly slow, and too much effort to keep putting one foot in front of the other, needing to sit down two or three times. My daily average dropped from 6,500 or so (and sometimes a lot more) to having trouble getting to 4,000 and sometimes settling for just 2,000. Couldn't motivate myself to do enough Nordic walking in the corridors to make much difference.

So yesterday I sent a message to the doctors (you have to do an online message form these days, I believe it's called progress) asking for the dose to go back down to 10. To my complete surprise a doctor (one I've had nothing to do with before) 'phoned a couple of hours later. He seemed to want to talk about amitriptyline and once I'd convinced him that the current dose is fine and doing its job and we played around with different doses years ago, we moved on to statins. I explained, and he agreed straightaway. So a 20mg pill on alternate days until the next prescription, and back to 10mg daily after that. Now, of course, the test will be whether that puts me back to where I was, or whether I've wrongly blamed the statins and it's all more to do with the chemo....

That's a bit of a mixed bag from the NHS. Some bits good, some less so. I still don't think they had an adequate reason to change the dose in the first place, but if the computer says to do it they don't seem to have the initiative to add a bit of human interpretation and avoid making a change which isn't justified by any more than another click of the calendar?

14/06/2025 Fatigue!

Bad case of "dex crash" fatigue today. We went to Maldon for lunch (half a cheese & tomato toastie each) and a walk in Promenade Park. As agreeable as ever with a warm breeze, sunshine, and the tide right in for once. But the fatigue hit on the drive home (I wasn't driving, fortunately) and has continued all afternoon and evening. Worst case I've had yet by some distance - it's a common enough reaction a couple of days after dexamethasone, curious that it's regularly worse this time around than it was during 1st line and maintenance.

Going to try for an early night (by my standards); boules at Ogar in the morning if I'm up to it. Which I hope I will be, missed the last two Sundays for bad weather. Too cold, in June...

Some good news from NICE - bispecific antibody treatment has been NHS-approved after successful trials with remission times up by x3. That should be another big step forward in the war against the beast. 

28/05/2025 Chemo #5

Had my fifth Dara & Velcade injections today without problems except that everything was running late at the Chemo Unit so what should have taken an hour and a quarter was actually close to two hours. Annoying, but that's hospitals for you.

One more to go to complete Cycle 2 - just three weeks to a cycle. I'm expecting several more cycles before we drop the Dara frequency down from weekly to fortnightly. Must now go and get some corridor walking done - fish&chips night at Walter House so I won't do much later.

Think I'll allow myself a glass or two of something red this evening.