Archive | April 2013

Out, spun, back in, bagged and tagged

So, the stem cell harvest went well.  The stem cell count on the first morning showed that there were sufficient to make it worthwhile to hook up to the machine for the day.  The apheresis machine is a little like a dialysis machine in that blood is taken out by the machine, processed and then returned (literally out of one arm and back in the other).  The difference is that whilst a dialysis machine treats the blood (to support or replace the kidneys), an apheresis machine separates the different components of the blood.  This is done in a centrifuge (spinning drum), so that the red blood cells (heaviest), white blood cells (medium-weight) and plasma (lightest) separate from one another.  The white blood cell fraction (which includes the stem cells) can then be separated off for storage.

Here’s the set up quite close to the end of the day – the bag furthest right contains my collected stem cells:

Apheresis machineIt’s a fairly easy procedure from a patient’s point of view.  The main issue is that it takes quite a while – about 5 hours each day – and you have a tube attached to each arm so you are rather immobile.  In particular, the “out” tube requires a slightly larger needle and that arm has to be kept fairly still.  On the first day I was hooked up with my right arm as “out” (and I’m right handed), which made opening packets of food tricky and made writing the crossword answers next to impossible (if you’re as thoroughly right-handed as I am).  I very soon gave up on writing the crossword answers and let the nurse do that for me – it also helped that he was better at crosswords than I am.  Thanks, David 🙂

So that was that.  At the end of each day someone from the blood service turned up, the bag of cells was carefully labelled (I was reassured to see how carefully they treble checked who I was and that my details were getting put onto my bag) and taken off for storage.

It turned out that come the second day I was producing stem cells at a good old rate (aah, gosh, one does what one can), so by the end of day two plenty of cells had been bagged, and in fact enough had been gathered for three stem cell rescues (or “transplants”) so there are plenty of options for the future.

One final oddity is that the gathered stem cells are mixed with DMSO (Dimethyl sulphoxide) to protect them during the freezing process.  DMSO has a rather distinctive smell, which has been likened to various things though tinned sweetcorn seems to be the most common.  This means that when your stem cells are given back to you, which is as simple as a basic transfusion, the overriding thing you are aware of is the smell of sweetcorn…  So that’s something to look forward to 😉

Sweetcorn

Harvest festival

image

After a week of “priming” – boosting of my stem cell production – I’m back today for the “harvesting”.  In fact it remains to be seen if any harvesting will actually take place today, as this is the first day, so the first step was to take a small blood sample to send off to the lab to see if the cell count in my blood is already high enough to make some harvesting today worthwhile. So, some waiting around in the café (photo) before the potential waiting around hooked up to the machine happens.

I’ll be interested to see if the count is high enough, because since last Tuesday I’ve been dutifully injecting myself every evening with the magic stem cell boosting juice (technically known as GCSF, or Filigrastim).  Because the stem cell production (in the bone marrow) increases, which literally (Paul) causes some outward pressure, it’s common to experience some bone pain, especially in the larger bone spaces (e.g. pelvis).  Until yesterday I hadn’t felt a thing so I was oscillating between thinking “Go me! I’ve got rock hard bones that aren’t going to be bothered by a little extra activity” and “Aw crap, it’s not working”.  I was therefore 80% relieved / 20% disappointed to feel a dull ache in the top back of my pelvis when I went to bed last night. So it seems to be working, but enough yet? Time for a coffee and a look at the headlines…

Booked in at the Hotel Haematology

Saw the consultant last week and the plan is to move on to the next phase of treatment.

Some good news was that the latest blood results (samples taken towards the end of March) have shown a move downwards again in the “free light chain” level.  In fact they had dropped back to a very similar value to the previous minimum achieved in January.

FLC.April 2013

Here’s the graphic that illustrates that.  I’ve not overdone the statistical analysis this time – there had been comments 😉 – and anyway I think the overall picture is pretty clear.  Generally there has been substantial progress downwards in the “lambda free light chain” level, although note that the bottom of the vertical scale is 1000 – ideally an even lower value would have been reached.

Also, despite the latest step downwards, the consultant wasn’t convinced that another cycle of this style of treatment would necessarily continue the downwards trend.  Moreover, that latest dip downwards had been achieved by upping me to the maximum thalidomide dosage (200mg/day), which I’ve tolerated quite well (though mornings haven’t been that pleasant), the main issue being some mild neuropathy (numbness) in the fingertips of my right hand.  I’ve been fairly blasé about this as it’s not been very bad at all, but all the doctors I’ve spoken to are very wary about it and clearly don’t want to push it too hard. A final consideration is that 8 cycles of Velcade (which I’ve now had) is the normal limit (both for medical and for financial reasons) and although it was conceivable to stretch out to another before moving on, it’s apparently best not to hammer the system too hard before moving towards a stem cell transplant.

So on to the next stage of treatment, which will be a high dose of melphelan and an autologous stem cell transplant.  Melphelan in high dosage is usually a very effective treatment, but also wipes out a lot of ‘good’ blood white cells too.  So much so that you’re left without much of an immune system, and need to stay in a protected (though not quite “boy-in-a-bubble”) environment for a while.  In order to be able to reinstate the required white blood cells, a bunch of my stem cells (the precursors of all blood cells) are gathered in advance, to be given back to me after the melphelan has been administered.  Much of the time (a month?) in hospital is waiting to for the stem cells to return to bone marrow, to start turning into the required blood cells again, and for the blood counts to return to a level where I’m deemed safe to emerge blinking into the sunlight.

Today I started the first step of preparation for this next stage: “priming”.  This involves greatly boosting the stem cell production for a week, ready for the “harvesting” next week.  Incidentally the harvesting is just a kind of blood dialysis (out one arm and back in the other) and doesn’t require any kind of drills and narrow spoons.  The stage today was a sizable dose of cyclophosphamide in order to temporarily halt the stem cell production, so that when subsequently boosted, everything is in synch.  I was given various warnings about the cyclophosphamide, but to be blunt I found today quite pleasant.  After two hours hydration on a saline drip I was hooked up to a bag of the stuff, which went in through a drip over another two hours, over the course of which I, well let it be said, got stoned.  There was a moment, shortly before the pink unicorns danced in(*), where it occurred to me that a chemo ward was probably not the place to get a giggles fit.  It wore off within an hour or so of being let out, but it was fun whilst it lasted.  Then for the rest of the week I’ve got to inject (oh yes, more of that) myself with GCSF, which boosts the stem cell production and causes the stem cells to emerge into the blood stream ready to be harvested.

Harvesting starts on the 22nd April, with a bit of settling down before I check into the Hotel Haematology on 14th May.  More on that soon.  I’ve asked for one of the executive suites with a sea view, a jacuzzi and an unlimited pass to the spa centre.  I may be disappointed.

(*) This may or may not have happened.

First morning in 6 months without a hangover!

And I’m not talking about alcohol. This morning was the first time in almost exactly 6 months when I hadn’t taken thalidomide the night before. Moreover the dosage has increased over that time, and since the beginning of March I’ve been on the maximum dosage.

Wow this morning felt good! And that was after quite a disturbed night’s sleep. My body has clearly got used to having a fair old dose of sedative each night, as last night come 2am I was still struggling to feel sleepy. When I did finally fall asleep I had some weird intense dreams.

But I’d forgotten what it’s like to wake up without a really thick head. The “thalidomide hangover” is well known, and it’s certainly pretty strong when you’re on the maximum dose.

So this morning was great. Nothing spectacular in itself, but a joy to be clear headed for once.

Mind you I picked up a new prescription for more thalidomide to start in two weeks time, so I’d better enjoy it whilst it lasts….

The end of induction chemo, or perhaps another cycle?

Time for an update.  Been a bit slack recently on the blog posts.  Oops.

Since I last posted, I’ve finished off cycle #7 and pretty well all of cycle #8.  These have generally gone very well, and by that I mean that I’ve been fine.  I’ve been working relatively normally, cycling (to/from work and went for a fairly easy MTB ride last weekend) and trying to do a 5 mile run once or twice a week.  I even went skiing for a long weekend at the beginning of March.  Not bad for a “chemo patient”.  It just goes to show that there’s a huge range of “chemo” treatments.  Follow my progress in the next stage of treatment when I go into hospital for the high dose treatment and see if I’m skiing then…

OK so I might still be reasonably fit, but there are one or two issues.  The ‘purpura’ (slight bleeding under the skin) on my eyelids come and go (though have been less frequent and intense recently) and my tongue is occasionally a bit sore round the edge.  Possibly of more immediate concern is that I have some very slight neuropathy in the finger tips of my right hand.  This is a relatively common side effect of both Velcade and thalidomide individually, and I’ve been on both for about 6 months now, so I’m actually doing quite well to have so little of this side effect.  Nevertheless,  nerve damage is not something to be taken lightly and for this reason the thalidomide dosage has only been cautiously pushed up.

The key parameter that we’re watching is the “lambda free light chains”, which to cut a long story short should ideally come down as low as possible during this stage of treatment before I move onto the next stage.  Towards the end of 2012 the movement was in the right direction, but the first few results in 2013 suggested that a low point had been reached in January and the value was starting to rise again.  So whilst I was kept on 100mg of thalidomide for cycle #7 (as I reported here), for cycle #8 the consultant cranked it up to 200mg (the maximum dosage) to try to counteract that rise.  I was, based on my extensive experience of haematological treatment procedures (my own), a bit skeptical, but the latest blood results have indeed shown that the value has dropped again – basically back to late January’s low point.

At my last clinic appointment we had started making plans for the next stage of treatment – a high dose of melphelan followed by autologous stem cell transplant.  More on that later.  There are various stages of preparation, and this could begin as early as next week.  However, with these latest results showing a reversal of the upward climb, it may be that the next stage gets delayed by at least another cycle, to try to get the lambda light chain level down even lower first.  The appointment with the consulant is tomorrow, so I’ll find out soon enough…