23/04/2025 Another Surprise!!

Well that's a surprise! Just had a 'phone call from Broomfield Chemo saying pre-assessment appointment tomorrow afternoon, first Dara (Daratumumab / Darzalex) injection on the 30th. First I've heard of it, I've had nothing from my consultant. I'm assuming that she must have seen at least one of the scan reports to make things move this fast (next consultation is on May 15). She's not waiting for next bloods results. Can't help wondering what's on those scans....

At least no more vacillating about "relapsing". It's relapsed. Wouldn't be starting treatment otherwise.

17/04/2025 Timescale frustrated

I had an email about a new imaging report on Patients Know Best. 

Full of anticipation I logged in and found this about my MRI scan:

The report will be available on 17 May 2025 at 16:07

Remarkably precise! But two days after the next consultant meeting.

Oh well. Perhaps the email and the blood numbers will be enough.

UPDATE: Someone on the Facebook Myeloma group that I used to admin has pointed out that the appearance of test and scan results on PKB may be delayed so as to give consultants the opportunity to deliver bad news to the patient in person before they read it online. Fair point. So I'm abandoning my idea of 'phoning Haematology Central Command at Basildon to put the appointment back a week, and crossing my fingers that she will have all the evidence she needs by the 15th.

16/04/2025 Timescale

 Now both scans are done (MRI last week, CT this afternoon), here's the timescale:

Approx 2 weeks for the scan reports to come in (although the CT tech told me that the scan would go direct to Haematology). That takes us to the end of April.

2nd May: Dentistry. After which I should be clear to start treatment including bisphosphonates.

6th May: Get bloods taken.

15th May: Face to face Haematologist consultation.

And then, I hope, some long-awaited action!

12/04/25 Surprise...

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!

11/04/25 The saga continues...

 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.

I was not pleased, but nothing to be done.

So I tried to contact Haematology at Broomfield Hospital to talk about this. Every 'phone number I have - reception, Clinical Nurse Specialists, Secretaries - didn't work. Either cut off immediately or "This number is no longer available". I tried the hospital's main reception and they gave me a new number. "No-one is available to answer this call".

I found some contact details on the Dental Review form for the centralised Haematology service in Basildon. I 'phoned the number. "This number is no longer in use. Goodbye".
So I wrote an email and sent it off. At least that hasn't bounced back as "Undeliverable, address not recognised" yet, but I won't be surprised if it does.

Then it was time for my regular online backgammon game. And while we were on our second game I was interrupted by a 'phone call from the dentist. He's had a cancellation and can fit me in at the start of May, just a week before my next haematologist consultation when I hope to fix the details of the new treatment. And I'll have had an MRI (tomorrow) and a CT (next Wednesday) by then as well. So, after after something of a roller-coaster day when I have several times felt like throwing my phone across the room or out of the window, all the pieces have fallen neatly into place. Sent an email to cancel the first one. But why do we have to through all this frustration?

10/04/25 Good news (sort of)

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.

I now have an MRI pelvic scan booked in two days time, and a CT skeletal survey in the middle of next week. Once the results are in we expect to start second line Dara, Velcade and good old Dex. She now seems confident that she can present that to the funding people (meaning that my years of Len&Dex "consolidation" don't count as a separate line of treatment). That's good news.

After five years of remission I suppose it's inevitable that a stupid part of the mind thinks "it'll never happen to me" and "maybe I'll be the first myeloma patient who never has a relapse" even though the rational part knows that's not the way the world works. But now there's the hard reality that I'm just like everyone else and the future will be filled with more repetitions of relapse/remission. Nothing there that I haven't known for years but today it's a bit more real. I expect those reading this and further along the road will know just what I mean; those who have never been diagnosed with a remission/relapse cancer will never really see the same view of their future.

Enough of the philosophy. I'm just glad the nine months or so of feeling helpless while watching the PPs drift slowly upwards then accelerate are over. We're going to do something, and my aim is to blast all those mutant plasma cells into oblivion just as quick as we can.

Have a good day, what's left of it. Keep positive!

Finally, my haematologist plans to start me on a new course of bisphosphonates (Zometa). I queried this, as my understanding is that once you've had 24 treatments or two years of it, that's it for life. But she says "new line, new Zometa". Have others had that?"

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After that, tea, coffe&walnut cake, and a walk in Galleywood Country Park on a most beautiful spring afternoon:

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.