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.

17/05/2025 Fatigue

It's hit a day early this time. I've done just about nothing today apart from slump in a chair in front of the computer and write a few Quora answers. Made a huge effort and pushed myself out to Tesco to get a sandwich for lunch, and that's about it. Should go to Ongar for boules in the morning, hope I feel up to it. And that it will be warm enough.

It's not just feeling tired, it's worse than that. Hard to explain. Both body and mind so occupied with the battle going on inside between the disease and the drugs that there isn't any energy left for anything else. Sleep - although I need some topping up after two dex nights - doesn't really touch it. Just time. Wait it out...

UPDATE: Did manage to get my 6000 paces for the day by Nordic walking the corridors here. Didn't think I would do it today but pleased that I did in the end.

15/05/2025 Chemo #3, Consultation, blood numbers

Chemo #3 yesterday, and the end of the rather short 3-week cycle 1. Just an hour and a quarter now, as I don't have any immediate reaction to the Dara. The only noticeable effect is some fatigue hitting on the second day of the weekend and into Monday. Consultant said that fitted with the treatment levels falling off at that stage.  Also reported a couple of minor nosebleeds - advised to go to A&E if I get a bad one that won't stop.

The forward plan for the chemo is that we continue as at present until there is clear sign of improvement not just in the numbers but in a scan, probably in 6 months time, to look at any bone changes. If that's good, then reduce Dara to 2-weekly and then to 3-weekly and finally monthly, continuing for as long as it's working i.e. blood numbers start going up again and/or new bone lesions appear. Velcade to continue weekly for the rest of the year, so I shall still have to go in to hospital once a week. Also Zometa starting early July, 3-weekly. That's on a drip in hospital.

Speaking of the numbers:

Paraproteins 23, down from peak in low 40s just before treatment started. FLC ratio 46.36 with kappa down from the 400s to 297. So the treatment is working, long may it continue!

Everything else is good, unless I'm going to worry about my red cells being minutely below the normal range at 4.49 (bottom end of normal is 4.5). I'm not worrying. Corrected calcium, which has been a tiny bit high recently, now back to inside the normal range.

That's it for today. This is a Chemotherapy image, I'm sorry to say that it isn't entirely accurate... I just get two stomach injections, and this time it was a male nurse. At least, I think so. Can't be too careful these days.

13/05/2025 Broomfield again

Back to the Cardio Unit today, Chemo tomorrow, consultant appointment Thursday... Good thing I've got a bus pass!

The story about the contrast echo cardiogram is that they didn't get very clear images last time and wanted "more definition of the heart wall". No suggestion of any right-left leakage. Anyway that was easy enough, and tomorrow's chemo should be just an hour or so which means I won't have to take as much stuff with me to pass the time. But will probably miss out on the free sandwiches.

Beautiful weather again today, it's as good a spring as I can remember. But some rain badly needed, although everything is still lush and green.

Still getting that bone pain in my back and ribs. I'm sure there's more there than the scans have shown.

07/05/25 Chemo #2

All went well today, no unpleasant reaction to either injection (Daratumumab and Velcade/Bortezomib) and no side-effects so far. Delighted to say no repeat of the hay fever like nasal problem of last week so now reasonably confident of putting that down to the high evening pollen count rather than the treatment. First of the week's two dex nights tonight, so not anticipating a lot of sleep (have to be up by 8:0 am no matter what...)

Bortezomib: