Archive | July 2012

I assume this is allowed…

When I visited the National Amyloidosis Centre (NAC) I signed up as a participant in their ALCHEMY (AL amyloidosis CHEMotherapY) study (well, apparently everyone is).  ALCHEMY is a research study aiming to assess the outcomes of AL amyloidosis patients using a programme of intensive monitoring with a focus on quality of life before, during and after chemotherapy.

As part of my participation, other than filling in various questionnaires, I have to get an extra vial of blood sample done on my clinic days (like today) and send it off to the NAC at the Royal Free Hospital in London.  “How do I do that?” I asked the nurse who signed me up to the study.  “Oh, just pop it in the post to us”, he said and handed me a bunch of pre-addressed padded envelopes…

Now apparently this is an entirely legitimate thing to do.  So today I got my extra vial done (the phlebotomist [good word…] didn’t seem at all perturbed that I wanted to take some of the red stuff home with me) and bagged it up and popped it in the post.  Weird…

Membership has its privileges

Today was my haematology clinic appointment to conclude the first cycle of chemo.  For this I had to get my blood samples taken about an hour and a half before the appointment itself and then kill some time.  Fortunately Macmillan have an information and support centre in Southampton General, and being a member of “the club” I get to hang out there on the comfy sofas and drink their coffee.  Membership has its privileges.  And I managed to read through a work file whilst I was there so both comfortable and productive…

In the end the clinic appointment itself was relatively brief (by the standards of oncology appointments) and more importantly was all positive.  We talked through my lack of side effects from the treatment, other than the (generally expected) moderate ups and downs on the dexamethasone (steroid).  I was complemented on my blood values (ah, one does what one can…) – total white blood count, neutrophils and so on are holding up (i.e. I’m not particularly at risk of infection) and my haemoglobin count is good (i.e. I’m not anaemic).  The value I’m really interested to see, the lambda light chain protein level (a key indicator of AL amyloidosis), takes a while longer to come back as its a rather specialised test.

So, I was prescribed another big green bag of pills, and signed off for the 2nd cycle of chemo to begin on Friday.  Ding, ding – seconds away, round two…

Petechiae, purpura, or ecchymosis? Probably purpura

OK, so it’s not all glorious sunrises and humorous anecdotes.  As I mention in the “About my Diagnosis” page, one of the symptoms that lead me to keep following up with my GP and ultimately led to my diagnosis were what I describe there as “intermittent blotches” on my eyelids.  As it happens I haven’t had many of these in the last few months, but this morning some more appeared after I’d had a shower.  Not quite sure why, but that does often seem to be the time they come.  You could hypothesize that I rub my eyes in the shower and that triggers it, but I also rub my eyes at other times and nothing happens…

More medically correctly these are described as “peri-orbital” (i.e. around the eye) and either petechiae, purpura, or ecchymosis, depending on how extensive they are.  From the definition here, I would probably categorize them as “purpura”, since there is certainly some minor spreading of the bleed under the skin, but I wouldn’t quite call it a large bruised area.  They appear very quickly, and then take a few days to ebb away.

 

Steroid insomnia can have its advantages

We headed down to Newquay on Saturday to join some friends for a few days there.  Drove down quite late, and whilst Andrea and Felix slept I merrily kept on driving without a hint of tiredness…  Made <ahem> good time for the trip down there (no, I’m not going to post my Southampton-Newquay journey time in a public forum – I am a lawyer of sorts you know).

Despite the late drive down, on Sunday morning I was awake well before 5am.  In a different setting that might have been a bit annoying, but from the Velux window looking back towards the Fistral beach bay, I enjoyed this cracking sunrise…  Come on folks, you gotta try these early weekend mornings.  You snooze, you lose.

4th (final) treatment day of first cycle

Today was the last treatment day of my first cycle of chemo.  Each cycle is four Fridays of the chemo drugs, followed by a ‘rest’ Friday.  Much the same as the previous Fridays:  morning appointment in a comfy chair in the chemo ward, quick blood test, dose of IV Velcade, flush with saline for a few minutes and off.

Just got to wait and see how my various blood values are doing when I have my appointment at the consultant’s clinic a week on Tuesday (in the run up to starting cycle 2).  Hopefully the fact that I’m not really noticing any side effects doesn’t mean that internally all the right things aren’t happening…

Space cadet

Ach, maybe this chemo malarky is starting to catch up with me, or at least the effects of that pesky steroid are.

Had a good old rollercoaster ride of ups and downs over the weekend – late to bed, yet awake at around 4am and got up shortly after 5am on Saturday and Sunday.  Felix was good enough to join me on the Sunday morning.  Conversely I then properly wiped out on Sunday afternoon, and it was hard to stay awake on Monday at work.   Monday night wasn’t great either.  Took  Tuesday off to recover, and spent quite a lot of the day walking into one room, wondering why I’d gone in there, going back to where I’d come from, wondering what it was that I’d set off for in the first place <repeat to fade>…

Third treatment day of first cycle

Friday the 13th, what better day to hit some chemo?  Here’s my Friday breakfast time sequence of pills:

Cycled up to SGH for my Velcade appointment at 9.30, which was straightforward.  Cannula in, blood sample out, saline in, Velcade in, saline in, cannula out.  Felt sorry for some of the other people in the day ward who were clearly having a much rougher time than me on their drugs – one guy opposite me looked to be about my age and was obviously not enjoying himself.

Afterwards I had a regular afternoon in the office.  Still not really noticing any effects – I think I may have a slight balance issue or mild lightheadedness, but it’s so marginal that I’m having trouble describing what it is.