Archive | Uncategorized RSS for this section

But not from me!

Apologies to those who may have read the title of my earlier post with some alarm.  It never occurred to me that it might be read as a final valediction from me until that was pointed out to me just now!

Few niggles to report in my next post,  but rest assured folks, I’m not going anywhere just yet…  Thanks for your concern. 

OK now they’re just messing with me – I can go home today!

So as far as I can understand what happened, the consultant (Le Grand Fromage) overruled the Registrar and has said that I can go home today after all!  The blood counts are still a little low today (neutrophils 0.6 and platelets 34), but the plan is to give me another infusion of platelets and another of the bone marrow boosting GCSF injections to boost the counts a bit.  Apparently they are then confident enough that I’ll be up in, and stay in, the safe region.

Should be having the platelets in and my central line taken out this afternoon, and then I’m good to go!  Apologies for the yes, no, yes roll-out of announcements –  I’m just delighted to be going home today after all!

Physical activity after myeloma diagnosis

I was interested by this article I saw in the news feed of the Myeloma UK website, discussing a decline in physical activity after myeloma diagnosis.  There’s a couple of things I find slightly curious, in particular the statement that “the research surveyed 229 myeloma patients and found that participation in physical activity declined significantly from pre-diagnosis levels”.  From the way this is formulated, this suggests to me that rather than the decline in physical activity being solely a result of the physical effect of the myeloma, it seems to be as much a psychological reaction of the patient to hearing the diagnosis.

Beyond the article itself, I’m also interested to read the experiences of other myeloma patients who have commented on the article.  One thing that stands out is that the great majority of them are clearly a lot older than I am, and also were only diagnosed after they already had some significant physical problem, often bone-related such as a crushed vertebra or suspected osteoporosis.  I’m clearly fortunate in that (due to also having AL amyloidosis and the more visible symptoms [tongue/eyelids] which that brought) I’ve been diagnosed at what seems to be an unusually early stage.  The article emphasizes that regular physical exercise is beneficial for myeloma patients, so getting out for my lunchtime runs seems to be a particularly good idea.  Keep on plodding….

Start of cycle #4, my first shot at Clexane, and mixing uppers and downers (update)

I noticed that in the last post that the emailed version of the post only had a still shot of me giving myself the Clexane injection.  If you want to see the video, you’ll need to follow this link to watch the video.

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…

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… 😉