06/03/25 Another consultation...

 ...with my haematologist this morning, face-to-face this time.

Paraproteins up from 6 to 10, light chain ratio up from 6 to 17, but that's still not enough to start another round of treatment. I had nothing in the way of new symptoms to offer, just the usual collection of more-or-less transient aches and pains, all of which might possibly be myeloma-related but none of them convincing enough. She thinks most can be explained by arthritis here and there, which is likely enough at my age...

We had a good and lengthy conversation about the current position. I am now "relapsing" but not yet relapsed - not until I can present some new lesions and associated bone pain, or signs of kidney damage, or other things I'd rather not get to. I'd like to get straight on with treatment but there are complications with NICE guidelines and NHS funding. One of the problems is with the dexamethasone and lenalidomide "consolidation" that I had privately after the stem cell transplant that never was back in 2020. My consultant then refused to call it "maintenance" (which, arguably, it was) and the reason is now obvious. If it had been maintenance it would have counted as second line (even though I hadn't relapsed, and as far as I've been aware new lines only begin with a relapse). And that would have meant that we would have lost the option to go back on either of those two drugs at a later stage. Such as now, or before too much longer. And if we can't do that it might mean going on to drugs not normally used until a stage or two further down the line, meaning that I might lose access to them when I really need them. Complicated.

She's working on ways to present my case to the funding authorities in a way that gets around these difficulties. So at the moment I'm in another sort of limbo, poised halfway between first line and second line, and I have to rely on her ability to find a good way through these tangles. I could help by developing a few good unarguable symptoms, so in essence I'm hoping for it get worse so that it can get better.

I hope that's clear. Or clearish, which is all it is to me. The alternative lies in those blood numbers. If the PPs get to 30, that could be grounds for starting a new line. Might be there in six months? Anyway, increasing the frequency of monitoring to six or eight weeks.

Bloods also show (corrected) calcium slightly above normal range. She thinks this is a hydration issue and I should drink more water (I freely admit I don't drink as much as perhaps I should) but I pointed out that it could also be a consequence of bone breakdown if new lesions are forming. But she doesn't want to do a scan to look for them without evidence of bone pain...

Ah well. It's back to watch'n'wait again.

On other things my walking is now back to normal after a few weeks of trouble with either my right foot or my right shoulder, And a beautiful sunny spring day in Chelmsford - 17C this afternoon after a 1C start this morning. Had a good walk into town and back through the park, with spring springing up all around. 9379 paces as I write, and will get that a long way beyond 10000 with Nordic corridor-walking later. And weight loss is also back on track after too many days of enforced reduced activity - now 13.8kg below my worst (2 stone and 2.4lbs). Over halfway to my ultimate goal.

19/01/2025 Results update

Slightly annoyed with my consultant. Reading my copy of the clinic letter sent to GP after the last consultation, not only are my paraproteins up to 6 but my free light chain ratio is also at 6. Normal range is 0.26 - 1.65. That's another strong indicator of myeloma activity starting up again in my plasma cells. She just told me about the PPs and said "Everything else is OK."

Well, sorry, but it isn't.

07/01/25 More Results

 'Phone consultation with my haematologist today. Paraproteins up to 6, everything else normal. So the pattern over recent months has been ...0..0..0..0..2..3..6. That, she agrees, is a definite trend and can't be dismissed as a blip, wobble, testng error, or similar. The Beast Is Back after five years of remission, three of them off all treatment.

She doesn't want to start treatment yet as I have no new symptoms to offer and therefore she thinks too early for another scan as risk of x-ray exposure outweighs chance of finding any new lesions. Not sure I agree but PPs at 6 is still very low and I can see the case for waiting. I do, of course, have the selection of aches and pains that can be expected in the second half of my 70s but they can be explained by degenerative changes (right wrist/thumb), return of old problem (right Achilles tendon getting troublesome again) or doing something stupid leading to muscle strains. I think I know how to recognise "bone pain" now, and I don't have any.

So it's back to watch'n'wait for another few months but if the PPs continue to increase at same rate or above (virtually certain, I think) she will order a CT next time. 

So there we are. Remission is over, even if relapse hasn't (arguably) quite started, and 2nd line is coming. Can't complain, I've had five years and general health is still good. Speaking of which, weight loss continues - now 11.7kg lighter than my worst, or 1st 8lbs if you prefer. 

18/11/2024 Much much betterer

 Not the myeloma, or not as far as I know. Next haematology consultation is in early January, and I've booked the blood draw for 18th December because of Christmas and New Year getting in the way. Instinct says the PPs will be up over 5 but who knows?

Other things, however, are improving. My HbA1c (diabetes) number is down to 43, and my watch has just reminded me that today is - at long long last - the final session. Or would be, if I hadn't pulled out of the ridiculous waste of time a couple of months ago. Weight is also going in the right direction, now down a trifle over a stone but aiming for a lot more. Or less, depending on how you look at it.

Yesterday week five of us from Walter House played some boules at the Falcon Bowling Club, and I was the worst I've been probably ever. Couldn't control my right wrist and fingers at all, and couldn't get a ball anywhere near where I wanted it to go. And then you start changing your mind about the shot you want to play halfway through the swing and it goes totally wrong...

Been bugging me all week. But we went again yesterday and I was back to normal - some good balls, some not so good, but very few hopeless. And my side won the doubles 13 - 12, so much happier now! Nevertheless, it's getting colder and I don't think my season will last much longer, which means less exercise and (even) more Nordic walking up and down the corridors...

22/10/2024 Results

Spoke to my consultant on the 'phone earlier.

The CT scan showed no new disease. Good.

The bloods showed everything (liver, kidneys, etc. etc.) all good but paraproteins up from 2 in August to 3 this time. Not really one thing or the other, so it's another two months of wait'n'see..

But..

My consultant said that the hospital had switched to a new and more sensitive paraprotein test method in July. So we have the possibility that all those zero/undetectables with the old test method might have been small positives if they had been done with the new improved one, and the recent "increases" might not be real increases at all.

I tried to ask some of the questions which spring to mind, but it was over the 'phone and she rather obviously didn't want to say any more. I'll be better prepared with some good questions next time.

Asking if anyone in the Myeloma UK world has heard of changes in the PP testing methods. A quick search hasn't turned up anything.

Just over a week ago I was getting my exercise and daily steps with the Nordic walking poles up and down the corridor here and I somehow tripped over the carpet and had quite a heavy fall. The top of the left pole hit my nose (but luckily missed my eye) - photo taken a few days later when it had started to heal but still very tender. I think I was a bit dazed by that for a few seconds and I have no memory of what happened to my right hand. It was OK for a day or two and then I got serious pain in the right wrist and could barely use that hand for anything. Suspecting a scaphoid fracture (common result of falling on an outstretched hand) I went to A&E on Friday. They took X-rays which the tech said were "inconclusive", and they gave me a Velcro-operated splint to wear. I hate Velcro...

Anyway, it's got better and I was called back to the Fracture Clinic at the hospital and told definitely no fracture, just inflammation and bruising but "a lot of degenerative damage" around the base of the right thumb. Entirely normal for my age, I believe. Just an exceptionally (and excruciatingly) bad case of the "flare-ups" that I get in that area every couple of months or so. And proof, as I've always believed, that exercise is a dangerous habit and really bad for you.

Nevertheless, did 7,000 paces in the park this afternoon and have lost about 7kg over the last two or three months, which I'm pleased about. More still to go! Have I mentioned pre-diabetes? That's for another time.

The wrist experience also involved a long story, yet again, of NHS low-level admin incompetence (and, I have to admit, some of mine mixed in). Basically I was sent to the wrong place and the wrong room at the wrong time. So next time you hear about patients missing appointments, take a moment to wonder whether they actually got the right details of where to be and when. In my experience, quite possibly not.

Oh well, another couple of months of not knowing. That's myeloma for you, always a new twist to deal with.

16/10/2024 Tense, nervous, twitchy...

 Had my latest haematology blood taken last Friday 11th, results due next 'phone appointment with my consultant on the 22nd so it's slightly scary time again. I'd almost forgotten what that's like.

I think the problem is that before the first relapse you can at some level kid yourself that it's never going to happen, that you're the first ever myeloma patient to remain in remission indefinitely...

But when it comes, as you know rationally that it inevitably will, you can't pretend any more that you're any different from everybody else. Relapse, remission, relapse, remission, relapse, remission... repeat ad lib... death.

Well, years ago we said that each remission gets shorter, each relapse is more difficult to treat, side-effects get worse. That may not be quite as true as it was now we have new treatments with new-fangled bi-specific and even tri-specific monoclonal antibodies, and effective, reliable and cost-effective gene therapies get closer and closer. Slowly. 

On the other hand, the dreaded dexamethasone is still hovering in my future...

We shall see. With luck the PPs will be back down to undetectable and the remission will continue, the evil day will be pushed a bit further back. But it's still a tense, nervous and twitchy time waiting for the 22nd.

20/08/2024 Here we go again...

Slightly less good news today.  Had a face-to-face with my NHS haematologist.  All bloods are good except that, after two and a half years of "undetectable", paraproteins are up.  But only to 2. Might be just a blip. Might be a measurement error. Equally, might be the start of a trend and my first relapse. Increasing the monitoring to two monthly rather than three. Can only wait and see...