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:

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.