Archive | September 2012

Last treatment day of cycle #3 and a bit of a 5 mile struggle

Yesterday was the last treatment day (Friday #4) of my 3rd cycle of induction chemo, with a dose of IV Velcade being administered up at Southampton General.  All very straightforward, and this time there were no paperwork or pharmacy delays, so I was in and out nice and promptly.

Back at work I went for a run in my lunch break with two colleagues.  I’ve been a bit slack of late with keeping up the running, and I was suffering over the first mile of the nearly 5 mile run, which went out from the office, over the Northam Bridge, down the other side of the Itchen River and back over the Itchen Bridge.  I can clearly feel that my cardio-vascular system is not doing its stuff like it used to, though it’s hard to tell how much of the effect I’m feeling is a) because I’ve not been running much lately and may have let my overall fitness slip, b) because I’m currently being treated (though in fairness on a Friday the steroid should give me an unfair advantage) or c) because of the effect that the existing amyloid deposits in my heart are having on its ability to pump oxygen round my system.  However I’m pleased to say that the initial difficulties on the run eased off somewhat, and the latter part was better (though not particularly easy).

I’ve also sent off the extra blood sample to London this week, for the lambda light chain result that was missing from the last set of results to be repeated.  Would be good to start seeing a reduction in these particular light chain levels, so fingers crossed for the results, which might be back next week some time I think…


Blooming marvellous!

Last weekend we nipped over to Kent to see some of my most faithful blog readers.  OK, so that makes it sound like you follow my blog, you end up getting visited.  Fear not / don’t try it [delete as applicable], the reason for the visit was to go along to the latest open day being held at Blooming Green, a fabulous bespoke eco-friendly florist and flower farm based on Loddington Farm, near Maidstone, Kent.  If it rings a bell, you may have seen them on Monty Don’s “My Dream Farm” on Channel 4 about a year and a half ago – as reported in the Daily Mail article here.

Despite the atrocious weather, we hunkered down in their shed (sorry, should that be reception area and bouquet preparation studio?) and enjoyed coffee/cake and a demonstration of how you turn a varied mix of flowers into a bouquet from Jen.  It was also great to catch up with some of my oldest friends.  Even better there was a large plastic digger for Felix to play with, and to turn a few heads as he charged round saying “Bagger! Bagger! Bagger!” (the German for digger, which of course sounds more like the Queen swearing to an English-speaking ear).

Here’s the bouquet we got to take home with us.  Now I have to confess it’s not like the finer points of flower arranging are much of a strong point, but I hope you will also see straight away that this is not the kind of bunch you see stuffed in a bucket outside your local supermarket just ready to be handed over with a box of Milk Tray (and an apology / hidden request [delete as applicable]).  And a week later it’s still going strong in our kitchen.

And for those of you wondering if I’ve gone a bit soft, singing the praises of flower arranging, don’t forget that I’m officially a chemo patient at the moment, so I can do what I like and being unsupportive of me would be nasty and mean 😉

Explanation for missing lambda light chain results from London. WARNING – highly technical

Wow, what happened to September?  It seems to have shot past and with it my third cycle of chemo.  Yesterday (Friday 21 September) was treatment day #3 of 4 of the third cycle up at Southampton General.  The treatment itself was very quick as usual when it finally happened – there was a some kind of confusion behind the scenes about the right authorization paperwork being in the right folder before they could dose me up, so I was waiting for about an hour on the pitch before kick off.  As it were.  Actually I was sitting in a fat armchair reading a book and fiddling with my phone, so it went pretty quickly.

Yesterday also brought the explanation about the missing lambda light chain value in the latest results from the NAC in London.  It turns out, brace yourself for some science here folks, that there wasn’t enough blood in the little tube I sent them to do both the kappa and the lambda tests.  Ha! Doh!  I don’t recall the tube being underfull, but frankly I wasn’t taking much notice.  So the plan is for me to get another blood sample done and in the post to London.  It’s a mild pain to have to make yet another visit to the hospital, but I’m mainly just pleased that there isn’t some scary medical reason for the missing value.

So, time to get another blood sample done to pop in the post.  And make sure that the tube is brim full.

Lambda light chain results back from London – blank (not zero, blank)

I received the results from the blood sample sent to London at the end of my second cycle / start of my third cycle of chemo by email today and was rather surprised to see that the main light chain result was blank.  Not zero, mind you – that would be too much to hope for at this stage anyway, but simply blank where a value should have been listed.  I actually get two values back from each blood sample that I pop in the post to the National Amyloidosis Centre in London – kappa (κ) light chains and lambda (λ) light chains.  It’s the latter that’s the more significant value for me, a central aim of the current chemo being to reduce the level of the lambda light chains as far as possible.  In this latest set of results a kappa value was given, but no lambda value was there.

It’s been mentioned to me before that the light chain assay that is done to measure these levels gets tricky to perform at the relatively high levels of the lambda light chains, so I hope that the absence of the lambda value isn’t indicative of anything unwanted – like the lambda values heading up rather than down as they should be.  I’ve been in touch with my ever helpful and friendly clinical research nurse at the NAC and he’s looking into what’s going on.

Sod the science training, this is personal (Clinic appointment to end cycle #2)

Next haematology clinic appointment today to round off my second cycle of “induction” chemotherapy (on “CVD” – Cyclophosphamide / Velcade / Dexamethasone in case you’re just catching up / have forgotten).  Also a good opportunity to discuss my recent few days spent in the care of Southampton General with the Registrar.

One item of good news was that my general blood counts have picked up from the values that I had when I was admitted a couple of weeks ago.  Whereas my WBC / Platelets / neutrophils were into a slightly lower range back then (2.7 / 129 / 1.4), today they were all back into more normal ranges (4.6 / 193 / 2.9).

The other particularly interesting blood result was that the light chain results that Southampton got from the end of my first cycle (independently of those that I reported here from the Royal Free in London) actually showed a noticeable drop (to something below 10,000 mg / l if I recall what the Registrar said correctly).  Now I know that I’ve been told that the light chain assay doesn’t give particularly accurate results at this higher end of the scale, but if I’m faced with two independent values one of which is stuck at around 13k and the other is below 10k, then I think I’ll go with believing the below 10k value thank you very much.  Yes I may have spent a good portion of my young adulthood training as a scientist, but sod that, this is personal… 😉