More than 3000 pills (and 550 injections!) later

It’s been a while since I updated things here…. which is generally a pretty good thing.

Looking back I’ve now been on essentially the same treatment since October 2013, based on lenalidomide (Revlimid).  Browse back a couple of posts to see my comments about this particular choice (not mine) of therapy.  Overall though, it’s been a good ride thus far, in particular that I haven’t really ever noticed any side-effects from taking the lenalidomide, which is great, for example by comparison with two of the previous therapies that I’ve dabbled in, namely thalidomide (which is a reasonably strong sedative) and high dose melphalan (which gets you a banged up (in hospital) for a few weeks and makes your hair fall out).

I guess that more important though is it that the treatment has been having approximately the desired effect of keeping things under a reasonably good level of control.  Put a bit more technically, that’s been monitored in terms of the light chain levels in my blood, which have come down to a level which, at least for me, is fairly low.  More specifically still, where a normal level for the light chains is of the order of tens of mg per litre, I’m now in the region of hundreds of mg per litre.  Not ideal, but a good improvement on the thousands of mg per litre that I’ve been at for much of the time that I’ve been on treatment and a great improvement on the over ten thousand mg per litre that I had at diagnosis…

The particular combination of drugs which I’ve been taken in combination with the lenalidomide has changed a little.  About the first half of the lenalidomide cycles (now into 4-week cycle #20) were a combination of lenalidomide, dexamethasone and cyclophosphamide, whilst the second half have been a combination of lenalidomide, dexamethasone and clarithromycin.  I’ve never noticed any difference between these two regimes in terms of side-effects, but one pleasant change more recently has been a reduction in the dexamethasone (steroid) dosage.  That’s always been the most significant drug in terms of the day-to-day effects of the treatment.  Previously I was taking 20mg of the stuff on Thursdays and Fridays, and ending up fairly seriously wired through Saturday (and only getting a few hours sleep each night) and then crashing down on a Sunday and Monday (with naps needed and a good dose of brain-fug).  A few cycles ago I came down to 10mg on both days, and now I just take 10mg on a Thursday, so only a quarter of the original dose.  This makes a great difference, as the up-then-down is still definitely there, but it’s very manageable and barely affects daily life.

And daily life has been busy.  A full-time job and family life don’t leave a lot of time for much else.  One thing (of many) that I’ve not found as much time as I’d like for has been exercise.  I’m a member of a gym near home, but (like many gym members) I don’t manage to go anything like as often as I should,  In fact there have been times when I’ve managed to go to hotel gyms when travelling for work more often than I’ve made it to my home gym.  Anyway, now that the weather is better I’m managing to get out on my road bike more often.  It’s a bit of an uphill struggle (quite literally) but nice to be out at least.  There are a number of factors which are co-conspiring to make exercise a bit harder these days and it’s not easy (or even possible perhaps) to know which is the most significant:  the underlying disease (most particularly the effect of the amyloid deposits in my heart – clinically measured my heart function is not what it used to be, though it’s still fairly good), general unfitness from not having exercised as much as I used to, or the effect of the ongoing chemotherapy – mild anaemia and some muscle reduction from the steroid – oh yes, imagine my disappointment when I found out that dexamethasone is not an anabolic steroid (in the style of bodybuilders), but a catabolic steroid (which tends to cause muscle reduction – damn).

So there we are – the current status – and as the headline says, since being on the lenalidomide I worked out that I’ve taken about 3200 pills since October 2013 – and self injected with Clexane (the anti-coagulant) about 550 times…  Yes, I now thoroughly rattle and my belly looks like a old pin cushion, but it seems to be working at the moment, so for the time being I’ll just keep popping the pills (and jabbing myself in the belly).  Oh, and I must get to the gym…

Thanks for listening folks.

I’m a dreadful blogger (which is good news in a way)

It has, I realise, been an awfully long time since I posted an update.  Apologies to anyone who’s been wanting an update but perhaps hasn’t wanted to ask more directly.  Double apologies if the radio silence was a cause of concern for anyone.

In fact the reality is that no news has certainly been (almost entirely) good news in this instance.  Since returning to work in August after recovering from my hospital stay (for an autologous stem cell transplant) I rapidly returned to full strength and activity.  This has combined with the double whammy of my particular workload having gone very busy in the last few months, combined with the fact that Andrea (wife) is in the final throes of getting a thesis written, which has upped my share of the parental care of Felix (son, age 3, bouncy).  Non-essentials have slipped off the radar a little of late.

I’ll give a brief overall summary here, but I think I’ll also back-date a few more detailed posts giving in particular more medical details, such that the information is there for the record.  If you only read this blog in its website hosted version, you’ll not really notice (apart from a few unread “previous” posts appearing if you’re a regular reader).  If you read this by email, the ordering might seem a little strange.

So, as I said I went back to work in August.  In fact I went back part-time for a week starting on Monday 29th July (41 days after discharge from hospital), found the part-time-ness frustrating and unnecessary and the following week was full-time.  I still eased myself in pretty gently – I’m fortunate that I have a desk-based job (it must be so tough for more manually employed labourers to go through what I’ve been through) and in particular my work colleagues have been fabulously supportive.

My “100 days since transplant” fell in September, and on the 1st of October (4 months after transplant) I had a review meeting with the consultant.  Just previously I’d has another bone marrow biopsy (BMB) done (in the brand spanking new Haematology Day Care wing of Southampton General) as well as a full bank of blood tests, including the all-important (for me) “free light chain” levels.  In overall summary the results showed that the hospital treatment had had a solid effect on my disease, bringing down both the unwanted bit in the BMB and the free light chain levels.  Nevertheless both were still at levels that warranted some more treatment.

A range of options for further treatment were discussed (see another more detailed post for that), with the decision being to start on a series of cycles of “consolidation” chemo, using the combination Revlimid / cyclophosphamide / dexamethasone (“RCD”).  Revlimid (aka lenalidomide) is a derivative of thalidomide and works in a similar way, but is less likely to cause peripheral neuropathy (numb extremities).  That was one reason to try the Revlimid this time instead of more thalidomide, as I do have some numbness in my toes, which the thalidomide I was taking previously is probably responsible for.

First cycle of RCD started on 31st October, and I’ve just started cycle two on 28th November.  It’s going very well (at least in terms of tolerance – no results are available yet).  The great feature of the Revlimid (lenalidomide) is that it’s not a sedative like the thalidomide, so I’m not getting knocked out cold every evening and waking up with a thalidomide “hangover”.  In fact the only thing I notice from popping the pills is the usual steroid effect, but in my case for these cycles, that has landed on Thursdays and Fridays, which actually is quite a nice little boost towards the end of the week…

So, more news to come when results are available, but for now I’ll keep popping the pills, burning the candle at both ends (especially on a Thursday and Friday) and juggling that with entertaining Felix.  This morning we’re going climbing at a local climbing wall with friends.  His first time ever and my first time back in far too long.  Should be fun!

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.

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…

Into cycle #7 – still on 100mg thalidomide

At the end of cycle #6, I first had an appointment at the National Amyloidosis Centre at the Royal Free Hospital in London, followed the next week by the usual haematology clinic appointment at the end of cycle # 6 and prior to starting #7.

The NAC appointment was spread out over two days, with the SAP scan (to map out the distribution of amyloid protein deposits) on the second day (having been injected with the tracer SAP isotope on the first day).  No great changes there, in that there’s been no progression in the amyloid deposits since the last SAP scan that was done in May 2012.  Equally there’s also been no reduction in the amyloid deposits, though that’s to be expected as in the interim my free light chain levels have been at elevated levels.

The discussions with the consultants at the NAC and with the Registrar at Southampton General the next week were fairly brief in the event.  Despite the slightly bullish attitude of my last post about upping the thalidomide dosage, the consensus view from the medics was to be cautious because I’d reported some hints of neuropathy, albeit extremely slight (just an occasional hint of slight numbness in a couple of finger tips).  As they stressed, although mild neuropathy might be expected to reverse somewhat, nerves in general are not good at repairing, so they are wary of pushing the thalidomide dosage too hard.

The Registrar in Southampton did however comment that at a review meeting prior to my appointment, the haematology team had commented that I was generally tolerating the treatment very well so far.  Given that peripheral neuropathy is a relatively common side effect of both Velcade and thalidomide, the fact that I’ve got to cycle #7 (of Velcade, with thalidomide since cycle #4) with so little neuropathy is quite a good performance.

Of course as I documented in overly-scientific detail in my last blog post, my free light chain levels still have some way to go before they’re down at what could be termed a ‘normal’ level, though I was pleased to hear at the Southampton appointment that the last two free light chain measurements made by Southampton have been ~2500mg/l and ~1250mg/l (as compared to ~6000mg/l and ~5000mg/l measured by the NAC).  It just goes to show how different the values can be when measured by two differently calibrated assays.

So signed off for cycle #7, with the thalidomide dosage held at 100mg/day.  On we go…

Towards the end of Cycle #6 – time to up the thalidomide again?

Not really been a great amount to report over cycle #6.  Just before starting this cycle I discussed how the treatment was treating me with the consultant at Southampton General and although I had generally been feeling pretty good, still going running, still working to a relatively normal level and so on, he thought it was sensible not to up my thalidomide dosage any more for cycle #6 because I’d reported to him that I have a faint hint of tinglyness (I wouldn’t go so far as to call it numbness) in the index finger tip and thumb tip of my right hand.  Some neuropathy is not uncommon as a side effect of having Velcade and also of taking thalidomide.  On my first cycle on thalidomide (cycle #4) I was on 50 mg/day.  For the next (cycle #5) I was moved up to 100 mg/day.  The consultant said to me that before I’d walked in the door he was considering putting me on 150 mg/day (apparently 200 mg/day is the limit).

I wonder now that I’m nearly at the end of cycle #6 (next week being the “rest” week and cycle #7 starting the following week) if perhaps I didn’t overplay my description of the fingertip tingling, but in reality I don’t think I did.  Funnily enough I tend to be pretty honest and upfront with my medical practitioners these days (not that I was terribly cagey and devious previously, but I think you get what I’m saying) and I just told him like it was.  I get the impression that the doctors are quite careful to watch out for any signs of neuropathy, as I read that it can take a while to build up and also can take a while to regress, even after lowering the dose.  In extreme examples the effect can be partially permanent.

Having said that I think that the fingertip tingling has actually reduced in the last couple of weeks, to the extent that it’s virtually non-existent now (though I need to be careful because I’m writing this on the second of my two steroid days this week and everything seems better when you’re on steroids…).  But I do think that it’s really at a level now where if I weren’t looking for it, I wouldn’t notice it.

More pragmatically, it may be time to weigh up some pros and cons.  Although my free light chain levels have started to come down now that I’m on the thalidomide, they still have quite a way to go before they are anywhere near a “normal” level (for a healthy individual).  Although a complete reduction to that kind of level from this induction stage of chemo may be rather optimistic, the aim is to get the levels as low as possible with the induction chemo before progressing to the high dose treatment and ASCT (autologous stem cell transplant).  My understanding is that the overall prognosis after the high dose / ASCT is better, the better the effect derived from the induction chemo that preceded it.  You can see the overview of the progression of the values from the following plot:

The dip down to ~7000 mg/l on 26/9/2012 is viewed as an anomaly – probably of the measuring technique, rather than a real variation in what was going on in my blood.  Moreover the scientifically minded amongst you will recognise that the data points should really have error bars (with respect to the measured LFLC concentration – I’m pretty confident about the dates) and indeed I’m told these could easily be +/-50% when measuring concentrations at these high levels.  But ignoring the anomalous measurement, it’s easy to see that it was really only when I switched from CVD (cyclophosphamide / Velcade / dexamethasone) to VTD (Velcade / thalidomide / dexamethasone) that real headway started to be made.

And in particular for the scientifically minded amongst you, have a look at the same plot with a logarithmic scale for the LFLC concentration:

Lower right in the plot I’ve added a band to show where a “normal” range of lambda free light chain concentration in the blood should be (i.e. between 6 to 26 mg/l).  I think that illustrates that there’s a little way to go yet.  By the way, for those of you who are self-confessed non-scientists (you know who you are), especially those who take a particular interest in my well-being, don’t be too freaked out by the second plot.  A logarithmic scale can be a little deceptive if you’re not used to looking at them – they’re useful when trying to show on the same plot two ranges of data values which have quite a difference in size.  However, it also has the effect of greatly compressing large changes in values towards the upper part of the plot, so it artificially makes it look like my values haven’t budged much at all.

I’ve probably overplayed the data analysis card by this point, so to scramble for the take home message: look at the first (linear scale) plot and think of the aim being to get the LFLC concentration as low as possible (ideally near as dammit to the bottom of the plot).  Which brings me back to the question about the thalidomide dosage.  Although it’s working, there is still a way to go with getting the LFLC level down and seeing as whatever neuropathy I may be encountering is so mild I’m currently thinking that upping the dose to 150 mg for the next cycle would probably be worth doing.  I can always switch back to 100 mg if I notice that the neuropathy is picking up, but I would like to see those levels coming down just a little bit faster.  And of course, otherwise I’m feeling very well:  I did two 5 mile runs last week, and even the Tuesday (non-steroid) one wasn’t too much of a battle (though Friday was lurvely);  I cycle to work every day (most days with my son in a child seat to drop /collect at nursery); and I’m working almost full time (allowing for regular medical appointments).

It’s good timing to be thinking about this, as next week I have another 2-day appointment at the National Amyloidosis Centre at the Royal Free Hospital in London.  A “two day appointment” makes it sound more dramatic than it is – it’s really just two 2 hour appointments on consecutive days.  The reason for the split is to be given an injection on the first day of a radio-isotope of a protein which temporarily binds onto amyloid deposits around my body, so that it has time to find its way round my system by the second day when they post me into a scanner (in which I fell asleep last time) which shows where those amyloid deposits are (the “SAP scan”).  I’ll also get to discuss my treatment with one of the consultants there, who are serious experts in my condition, and they will doubtless have some advice about whether to push the thalidomide dosage now or not.  Then the following week, shortly before starting cycle #7, I have my next appointment with the consultant in Southampton, who’s ultimately the one who writes my prescription for the next cycle (and in fairness is also pretty damned knowledgeable about my condition too – sorry Dr J, didn’t want to cramp your style).

So, more updates to come about how the London appointments next week and the Southampton appointment the week after go, and what the plan is for the next cycle.   Watch this space.  Phew, that turned into a longer post than I was expecting and it’s now 2.30am, but that’s days on dexamethasone for you.  Well done and thank you if you’ve read this far.

End of Cycle #5 – time for an update

Just getting to the end of my 5th cycle of induction chemo, so time for an update.  Apologies to those of you who’ve been wondering when my next post would come.  It’s been pointed out to me that when authoring this kind of blog one shouldn’t leave it too long between postings, as people might start to worry…  Ha! Never fear folks, I’m fine.  Simply a busy time of year and no great changes to report, so blog posting slipped down the list of priorities a little.

This coming Friday I’ll start my 6th cycle of induction chemo and today I had a clinic appointment with my haematology consultant.  The 5th cycle has been fine.  This was my second cycle of a “VTD” (Velcade / Thalidomide / Dexamethasone) combination and the first with 100mg of thalidomide instead of 50mg.  In fact the consultant was considering cranking me up to 150mg before I saw him, but decided against it when I reported that I have a very small hint of numbness in my right thumb tip and first finger tip.  Some neuropathy is a reasonably common side effect of thalidomide (and sometimes of Velcade), so it’s not that surprising, but the consultant was keen to try to keep it in check, so I’ll be sticking on 100mg for cycle #6.

The most recent blood results (from the end of the 4th cycle) from both London and Southampton show a noticeable drop in the light chain levels, though in absolute terms the level is still rather high and there’s a way to go yet in getting it down.  It’ll be particularly interesting to see the measurements from the blood samples that were taken today, as these are at the end of another cycle on thalidomide but at twice the dose, so hopefully might show even more of a change.  Watch this space…

We also discussed the coming months.  Originally my stem cell harvest / high dose treatment / stem cell transplant was penciled in for February, but it looks likely that it’ll now be a little later, perhaps at the end of March (which would be at the end of cycle #8).  In February it’s now planned to do another bone marrow biopsy, where a small sample of bone marrow is extracted from the back of the pelvis.  I had one of these back in April as part of my original diagnosis, and it turned out to be much easier than I thought.  The local anaesthetic worked a treat and there’s just a bit of shoving going on behind you.  The bone marrow biopsy will show how the myeloma aspect (i.e. the clonal plasma cells) is responding to the treatment as opposed to the amyloidosis aspect (i.e. the light chain levels).   The two are closely related in that it’s some dodgy plasma cells that have gone clonal (i.e. myeloma) and are overproducing light chain proteins (i.e. amyloidosis), but it is apparently possible for the dodgy plasma cells to fall into more than one class, each of which may be contributing differently to the different aspects and which may respond at different rates to the treatment.  In general the current treatment is likely to be continued whilst the light chain levels continue to fall, in order to get the maximum benefit from this stage of treatment before proceeding to the stem cell / high dose part.

So, roll on cycle #6.  And fingers crossed for further drops in the light chain levels.  C’mon thalidomide, do your stuff.

TGI Friday

Well, TGI Friday.  I’ve now had a week on 100mg of thalidomide daily (as compared to the 50mg that I was on for the previous cycle) and I’ve certainly noticed a difference.  In the last cycle I seemed to build up a tolerance to the sedative effects of the thalidomide pretty quickly, to the extent that by the end of that cycle I wasn’t really affected by it.  Having upped the dose for this cycle, the brain-fugg and general doziness has returned, and indeed is more pronounced than last time.  Hence I’m rather pleased that it’s Friday, which means it’s steroid day.  Nothing like a shot of dexamethasone in the morning as a little pick-me-up.  At least I should be operating a little more normally for the next couple of days.  And of course the steroid flicks the appetite switch in the brain (or more accurately, it jams the switch in the “feed me, feed me NOW” setting and then snaps off the switch so no-one else can interfere), so TGI Fridays sounds quite attractive right now…

End of Cycle #4, Start of Cycle #5

On Friday I started cycle#5 of my 5th cycle of “induction” chemo.  This was also my second cycle with thalidomide replacing cyclophosphamide in my treatment mix.  At my clinic appointment on Tuesday, I discussed with the registrar my experience of the new drug mix , which has generally been fine.  When I first started taking the thalidomide it did knock me out somewhat (though I take it at night, so it was not such a problem) and if I took it too late I could still feel the effects the next morning.  I think it’s normal to build up a tolerance to these side effects of thalidomide and certainly in the last couple of weeks of the last cycle I found that I was less affected by these sedative effects.

I also had one minor episode of ankle oedema (swelling) one evening early on in the last cycle, which was pretty easily resolved by transferring to the sofa and putting my feet up.  Probably the more significant side effects of taking thalidomide are a) the increased risk of blood clots, so as I’ve demonstrated here I’m also self-injecting Clexane (an anti-coagulant) in the evenings, which is fine once you get the knack; and b) the possibility of peripheral neuropathy (numbness in the finger and toes tips), which I seem to have pretty well entirely avoided so far (perhaps a hint of in my right hand thumb and index finger tips, but it’s marginal to the point of non-existence – I don’t think I’d have identified it if I hadn’t been warned to watch for it).

The one further side-effect, related to taking the anti-coagulant, is that it seems to be increasing the intensity (though not the frequency) with which I get the purpura / ecchymoses (minor rash-like bleeding) on my eyelids.  I’ve commented on these before and they haven’t really changed much since then, in that they come every couple of weeks or so and then take a few days to go (depending on how intense they are).  Here’s an example of the slightly more intense version resulting from the Clexane:

Moving on to cycle #5, the registrar agreed that I was generally tolerating the thalidomide well, so has moved me on to a higher dose (100mg daily, rather than 50mg), which is in fact a more ‘normal’ dosage (the maximum being 200mg/daily) and the 50mg was something of a gentle introduction.  Thus far it seems fine, though the original effect of tending to knock me out on the sofa if I settle down to watch something an hour or so after I’ve taken it is back based on last night’s experience…