06/05/2025 Round Two tomorrow

The story so far...

The "hay fever" attack last Wednesday evening was followed by a smaller one the day after. There is some circumstantial evidence that it was the result of very high evening pollen counts and therefore nothing to do with the Daratumumab but obviously can't be sure. We'll see what happens this week.

Also some mild fatigue over the last two or three days, difficult to motivate myself to a decent exercise level or do anything much. That's not unexpected with any form of chemotherapy. And a nosebleed last night followed by another this morning - both dried up quite quickly. Also a recognised side-effect of Dara. Will talk to the nurses about these things tomorrow.

A small delay in the dental work needed to clear me to start on bisphosphonates - my dentist has replaced one big filling with some decay showing underneath and has done the preparatory work for the root canal job on the adjacent tooth. That will be finished (and should be signed off Friday morning - an 8am appointment!). That week's delay isn't a significant problem but will mean another trip to Broomfield to deliver the report to Haematology. Starting to live there again...

Broomfield Cardio called me in for a repeat of the cardiac echogram with added contrast medium "for clearer images". What I only discovered from the appointment letter that arrived a couple of days later is that they're going to do a "bubble echogram". There's only one reason for that, which is that they suspect some leakage between the right and left atria - basically that's a leftover from the "hole in the heart" that we all have in the womb and which normally heals up a few days after birth. Except that sometimes it doesn't, or not fully. That's not uncommon and usually trivial - if I've got it I've got along ok for 76 years so I'm not exactly worried, and no way they're going to attempt a surgical repair so I'm struggling a bit to see the value of investigating further. Just the NHS dotting the i's and crossing the t's, perhaps. But I shall ask some questions next Tuesday.

01/05/2025 Second Line #1

Day One of 2nd line treatment yesterday. All very good and civilised at Broomfield and as I'd taken my phone, my Surface notebook, two Kindles and an old-fashioned paper book I had plenty to occupy myself through the six hours. I spent most of the time with the paper book!

No side effects or reactions from the Dara as yet unless I count a particularly bad attack of runny / blocked nose at about 7pm. I'm not too sure how it can be both at the same time, but it does. I think this is just my usual combination of rhinitis, solar sneeze, and hay fever but even worse than usual. If it's still bad in the morning I'll have to report it.

Back again next week, and just very happy to be on the attack again!

UPDATE 01/05/25

Pleased to report that things are back to normal this morning so I think it was just the usual rather than the Dara. But I'm not up to 48 hours yet! OTOH I didn't get to bed until after 2am and was wide awake at 4:20. Yes. Dex nights are back. Almost like an old friend...

26/04/2025 Scan reports

 Here they are, in  .jpg form. NB I haven't had a chance to look up lots of things yet...

24/04/2025 The Saga Continues...

More NHS confusion. Day before yesterday I got a phone call with an appointment in the cardiac unit on Monday for a heart scan and ECG. OK, just routine, I hope. Then yesterday morning I had an email from Patients Know Best. Assuming it was just a confirmation of these other appointments, I got on with some other things before I opened it at 12:20.

Notification of a Haematology appointment at 12:00 - twenty minutes earlier. My Tardis being temporarily unavailable, I hit the phone for Broomfield and for Appointments Central Command in Basildon. Twenty-something in the queue for both. So as I'm due in Broomfield Chemo anyway at 14:00 for pre-assessment, I got in the car and headed for the hospital. Got to Haematology at 13:00, only to be told that they have no record of an appointment for me today, and I was given the firm impression that they don't have a high opinion of Patients Know Best...

Nor do I.

Anyway, secretary told me that Dr.Elshazly would see me either before the 14:00 appointment or after. The pre-assessment came first, nothing new there, just going through my history and etc.. And after another hour in the waiting room, I got to see Doc E, whose voice had just about given up after a long day consulting. I could barely hear her some of the time.

We looked at both the CT and MRI scans. Small lesions pretty much everywhere, one "extra-medullary mass" in the low spine but not threatening any nerve roots, and two big "fleshy areas" in the bone marrow halfway along each femur. So plenty of evidence of active myeloma. I gather that the radiologist for the CT scan was thoroughly confused by the big blob of bone cement in my left hip...

I should be getting the scan reports emailed to me later today. On past performance, I'll have to ask at least another three times.

Treatment starts in the Chemo unit on the 30th, continuing weekly at present. Daratumumab (injection into abdomen), Velcade (injection again), and Dex (2 days of 20mg per week, as before. Sleepless nights coming! Not to mention constipation, but I'm better prepared this time and should be able to manage it OK. Blood tests weekly, and I've just spent a happy half hour online booking lots of them at the Chelmsford Health Hub a few minutes walk away. Couldn't fit the first two in so will have to phone Haematology (Don't make me laugh, in the words of Mr. Ring-a-Ding) to arrange for the Clinical Nurse Specialists to do them.

The long watch'n'wait is over and at last things are starting to happen. That's a Very Good Thing.

If only I could say the same for Patients Know Best.

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!