Had my pelvis MRI, no problems. But when I came out and checked my phone, there was the inevitable Gmail message about my email to Basildon Haematology HQ: "The recipient server did not accept our requests to connect".
In other words, the email address on the Dental Review form is just as useless as the telephone number. What a surprise!
Of course it couldn't possibly have gone smoothly...
This morning I had an appointment with my dentist to fit a new crown after root canal treatment last week. I took my Pre-Bisphosphonate Therapy Dental Review Form with me and gave it to him. Being the thorough and efficient dentist that he is (and far and away the best time-keeper ever, I rarely have to wait even a minute beyond the appointment time) he took a couple of new X-rays and compared them with my last ones before announcing that I have two teeth "requiring investigation" - one will need an old filling replacing and a possible crown, the other will be a new crown and probably a root canal job. So I went to reception to make an appointment. First one available was in June, meaning a delay of at least a month and probably more before being in a position to start my 2nd line treatment.In the immortal words of Etta James - At Last....
From today's post in the Facebook Myeloma UK Support group:
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"It looks as if the long and frustrating watch'n'wait is over. Today's blood numbers (five weeks after the last set) show PPs up from 10 to 18 and the FLC ratio up from 17 to 31. Not quite the doubling that my haematologist was looking for, but close enough. I was also able to offer her two possible symptoms - bone pain in the back rib cage on the right (where I had a previous lesion) and a left hip issue affecting proper movement - very similar to the problems caused by an "extra-medullary mass" i.e plasmacytoma five years ago.
...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.
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.
'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.
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...
