I got hit by a dose of reality in January. Well, hang on, I’m getting a little ahead of myself there. First I got hit by a dose of a winter flu virus.
I woke up on a Saturday morning (it’s always the weekend that I get ill, and normally I’m “nicely” recovered by late Sunday evening, in order to go to work on Monday morning…) and, well, barely woke up. Bed was where I stayed for almost all of the weekend, with my greatest achievement being a heroic transfer to the sofa in the sitting room at some point on Sunday. And there I stayed. Not just for Sunday as it turned out, but for several more days. One reason for this is that whilst the rest of the house is subject to the temperature defined by the central heating, an individual gas fire in the sitting room allowed me to keep that room nice and snug, even at 3am, without warming up the rest of the house.
Lesson #1: If, at least in my condition, you find yourself rather temperature-sensitive, it might be a good idea to take your own bodily temperature. With hindsight, not taking my temperature seems idiotic, but I wasn’t quite thinking straight at the time…
So I drifted on to mid-week, not really getting off the sofa much, but somehow thinking “ah, but tomorrow I’ll surely feel better”. In fairness to me, there was a hint of logic to this thought, in that in mid-December I’d had a minor bout of some kind of winter virus, which I’d shaken off in just a couple of days.
And then come Wednesday that week, my steroid day, I popped the dexamethasone and, lo and behold, started to feel much better late morning and by the afternoon, was positively bouncing along. Again, with a clear head, it seems crazy that I didn’t really register the fact that it’s like that EVERY WEEK with the dexamethasone…
Lesson #2: Be aware of the very artificial – and always temporary – boost that the dexamethasone gives you.
And it is temporary, because by Thursday afternoon I started to realise that I was crashing back down rather fast, and on Friday morning, finally taking my temperature just to put a numerical value on it, it was staring me rather bleakly in the face – I was really quite unwell and needed some professional medical intervention. So, after a call to the acute oncology ward at the hospital, I packed a bag with a few items of nonsensical stuff and then slumped back down on the sofa and got my lovely wife to pack some more sensible items, and then was dropped off at the hospital.
A quick blood test later and the reality was unavoidable – yes, I knew I wasn’t very well, as I felt rubbish, but the blood values spelled it out to me – I was quite significantly neutropenic (i.e. with a low neutrophil count – neutrophils being (normally) the most common type of white blood cell and an essential part of the immune system). The medics who talked to me had then sense to tell me off for not coming in sooner and in particular for being so slow to take my temperature. And I was admitted to the hospital and immediately started on a powerful IV antibiotic.
Lesson #3: Don’t forget that the chemotherapy, as well as attacking the myeloma cells, also suppresses the immune system, and of course as well as the dexamethasone mid-week I’d also kept merrily taking the lenalidomide all week. Suffice to say that as soon as I was admitted (and thus no longer in charge of my drug regime) I wasn’t taking the lenalidomide for a few days…
I rapidly felt much better after a day or so on the IV antibiotic, and, having been admitted on a Friday, by Sunday afternoon was feeling much more normal, quite bored, and hoping that on Monday I might be discharged. Until on Monday morning the really very experienced “junior” doctor who did the ward round told me that the chest x-ray I’d had, the sputum tests I’d done, further blood tests, and the sound of my chest, told them that I’d got pneumonia…
I really didn’t see that coming. Yes I suppose I’d noticed that my breathing was a bit flatter than usual, but I’d not thought much of it. I wasn’t coughing much. But that kept me in for another couple of days, though the IV antibiotic had really done its stuff, and around then I was in fact switched from the IV to an oral antibiotic. But a couple more days stuck in the hospital were unavoidable, until on the Wednesday I was discharged. A slow couple of days at home – back to the sofa! – but feeling entirely different and by the weekend I was recovered, but just slow to move around. I went back to work the following Monday.
So all in all various lessons learned. On the one hand, as this whole blog shows and as I emphasised in my last post, I’m lucky that generally, despite the fact that I’ve been diagnosed with two conditions that even individually are serious, and often have a rapid negative effect on those who are diagnosed with even one of them, much of life has continued fairly normally for me in the nearly 4 years since my diagnosis. But on the other hand there are limits, as this recent episode of viral (and bacterial) infection showed me, and I can’t just pretend that I’m physiologically normal. Most of all need to watch out for infections when they turn significant, and get help promptly when they do…
I’ve been trying to keep fit and not managing very well. It’s a time thing. You know how it is, you sign up for a gym, you do the math(s) of how often you think you’ll go, how much the subscription is and so on, and then reality kicks in, work and family do their thing, and the gym owner ends up doing a lot better out of the deal than you thought.
I also used to run quite a lot. Heck, let me just casually drop in to the conversation (this is quite definitely being my conversation after all) that in my time I’ve run the London and Berlin marathons, and used to do some “mountain marathons“, where you and a similarly masochistic friend navigate for two days across some remote mountain terrain, with everything you need (tiny tent, tiny this, tiny that) to “survive” for the weekend. It was fun, really!
But the running hasn’t gone so well in the last year-ish. It seemed to be OK in the first year after my diagnosis in 2012, and I even got back in to it pretty quickly after my high-dose-and-stem-cell-rescue treatment in 2013. But in about the last year it just hasn’t been as much fun. The pace I could manage was a lot lower, often to the point that even on a shorter run (e.g. 5K) I needed to stop a few times to recover before continuing. And bike rides have been harder as well – especially the uphills! I used to be the polka-dot-man (Tour de France jersey reference) amongst my cycling friends. Not recently. Not good. And in the back of my mind I didn’t really know why. Was it the effect of the underlying disease on my heart? Was it just psychological? Was it a feature of the ongoing treatment in some way? Perhaps a mix of the three?
However in the last few treatment cycles (months), I’ve been on the same old, same old treatment, but have also had some ferrous sulphate (iron tablets) thrown into the mix. My iron levels were a bit low it turns out, and as a result (one assumes) my haemoglobin levels were also a bit down. The normal level for a man is approximately 138 to 180 g/L. I wasn’t a huge amount below this (I’ve always been over 100 say) but was certainly below the lower bound. So I’ve been taking ferrous sulphate for the last few months, which have now brought the haemoglobin levels nicely up into the acceptable range.
I hadn’t been running for a while, but arrived in SW France a few days ago with the family for our summer holiday and finally had the time to get out and try running again. Just jogged along the coast and back for 5km, but wonder of wonders, I could keep jogging the whole way. Shoddy pace – 5km in about 32 minutes would, I confess, have elicited some poorly disguised derision from me only a few years ago – but it was great to just be able to plod along for the distance without stopping. Next goal – crack the 30 minute barrier! Seems this haemoglobin stuff is quite useful… So as I’ve said before, keep taking the (iron) pills…
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.
Good heavens, I’m posting a blog update again! Apologies to those who have been looking for an update a little sooner. There were a few in the pipeline, but [delete as appropriate]:
- I wrote hundreds of them but just couldn’t for the life of me find the “Post now” button – there it is! How could I have missed it!
- I wrote them all out on paper first, but spilled beef gravy on every single one and the dog ate them
- The terms of my court order have prevented me, until now, from publically communicating with groups of more than 6 people
- I’ve been so very busy with work and family life that writing a short blog update was just out of the question
- I kind of just forgot about it
- The treatment has just been ticking along in the background, without too much effect on daily life, and it was nice to just disengage from the whole issue for a while
[You may gather that there is a spread of veracity to that list, tending to start weakly and improve going down the list]
A high-level summary
After my hospital stay last summer for high-dose chemotherapy (melphalan) followed by autologous stem cell rescue (i.e. using my own previously stored stem cells to repopulate my immune system), I started on some “consolidation” oral (pill-popping at home) chemotherapy in late October – to improve on (“deepen”) my response to the melphalan treatment.
This consolidation treatment has been based on lenalidomide (Revlimid), in combination with cyclophosphamide and dexamethasone. Those familar with this kind of stuff will recognise this as “RCD”. As I’ve previously commented, being on the lenalidomide has been really good, in that I really don’t notice that I’m taking it and don’t appear to have suffered any side-effects. Lenalidomide is a derivative / development of thalidomide, which I took previously and although it was really quite effective in terms of treatment, it was quite hard work (thalidomide is quite a strong sedative) and has left me with some numbness in my toes. The more significant feature of this RCD treatment is the effect of the dexamethasone (a steroid). I take it on Thursdays and Fridays, and don’t get much sleep the following nights. Actually this itself isn’t so bad, as I get a lot done on those days – both from just having more hours in the day and from the mood / drive / energy boost the dexamethasone brings. The downside is the consequent come-down / crash that inevitably follows later in the weekend and tipples over into Monday a bit. But you can plan for it and it’s workable. Incidentally, for others taking dexamethasone, I understand that the default prescribed pattern is to take it for four consecutive days, separated by a week off. Discussions with my consultant revealed that there isn’t much evidence either way for which pattern (2 x 4 consecutive days split by a rest week; or 4 consecutive weeks taking it on 2 days) is more effective. I gather from others, and can well imagine, that 4 consecutive days of dexamethasone would be really quite hard work and I recommend the other pattern.
And generally the progress of treatment with RCD has been good, with progress (measured by the level of free light chain proteins in my blood) overall being in the right direction (downwards) – with some of the usual fluctuations (for me) on the way. The values aren’t where they should be, but hopefully the downwards progress with this regime can keep going in that direction for a while yet.
One curious hitch
There was one minor hiccup though. Just before Christmas one of my liver enzymes (ALT) that is monitored shot up, and it was unclear why. I came off the treatment for a month or so (essentially skipped a cycle) whilst various further tests were done to try and track it down. The curiously good news (I think) was that it turned out not be be any kind of reaction to the treatment, but in fact I’d picked up hepatitis E. OK, so not so good in itself, but good because a) I could resume the same treatment regime; and b) by the time it had been identifed as the cause, I’d already independently seen it off (and had the antibodies to prove it) – thus demonstrating an effective immune system (at least in this regard). The footnote to this story is that I’m pretty sure what might have given me the hepatitis E (which is well known to be present in quite a lot of uncooked pork). A week or so before the ALT levels started rising, I’d been in Grenoble, France for a work trip on my own, and one evening ordered a starter, which to be honest I wasn’t entirely sure what it would be. Turned out to be a kind of sliced pate sausage, which had only been very lightly pan-fried on each side of the slices. More curious is that I actually took a photo of it at the time. I’m a bit of a foodie, but don’t often go as far as taking photos of resturant dishes, but I was eating on my own and got a message from my sister asking what I was eating, so I showed her. And here it is:
So, you have been warned. Possibly better to establish what you’ll actually be getting when you order – though that does take some of the fun surprise element out of it. (I mean the fun surprise of trying some new food, not the fun surprise of contracting hepatitis E).
More soon, folks.
Last week I had my regular clinic appointment at the end of my second cycle (month) of “consolidation” chemotherapy. This being “consolidation” to seek to deepen the response already achieved by my hospital treatment earlier this year (high dose melphalan and stem cell transplant). The particular chemical combination selected, as mentioned in my previous post, is Revlimid (aka lenalidomide) / cyclophosphamide / dexamethasone (“RCD”).
So far I have to say I’m loving the lenalidomide. Most important of course is the effect it’s having on the disease, and the initial results look quite promising. It takes a while for the blood test (assay) to be done to measure the level of “free light chains” in my blood, these being one of the key indicators of the disease that the treatment is tackling, and at the end of this second cycle the results from the end of the first cycle were available (from both Southampton and from the NAC in London) and both showed a significant drop in the free light chain level (Southampton of about 850mg/l -> 450mg/l and London of about 1800mg/l -> 600mg/l). The difference in absolute values between the two shows how lab / assay / calibration dependent the tests are, but the overall message is good. Hopefully that sharp downward trend can continue.
But the other good thing about the lenalidomide is that I don’t seem to be suffering from any side-effects in taking it. Best of all is the complete absence of the strong (in the doses I was taking) sedative effect of thalidomide, which manifested itself as a fuggy brain in the mornings (the thalidomide hangover) which tended to hang around for a while in the day too. I haven’t noticed any peripheral neuropathy (finger or toe numbness) either and I’m watching out for that pretty carefully as the thalidomide treatment has unfortunately left me with a bit of residual numbness in my toes, which is bearable but I wouldn’t want it to get worse.
So in fact far and away the most noticable effect of this RCD treatment is the dexamethasone “boost” (and lack of sleep) that I’ve mentioned several times before. Mind you, even that isn’t such a pain in this treatment, as my “dex days” have landed on a Thursday and Friday, so just as I’m getting to the end of the working week I get a little pick-me-up which I’ve found quite productivity-enhancing! I rather surprised one guy I was working with recently by discussing some material on a Thursday that I had to then turn into a long written document, which was done by Friday morning. I’d been up half the night doing it of course, but I was awake and my brain was buzzing, so it made sense to just crack on with it!
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!
It’s been much too long since I posted an update on my blog, but I’m sure you’ve all been off enjoying your summer holidays, so hopefully I’m just in time now that you’re back.
I’m now back at work, having tried a week part-time (mornings only) and then upgraded to full-time. In fact I found the week of just mornings a bit frustrating, as I would spend the mornings sorting things out, dealing with emails, talking to colleagues and so on, and just as I’d cleared my desk to be able to get into something substantial, it was time to go home.
Before that the time spent at home after I came out of hospital was a little frustrating, though not unpleasant. I think I hadn’t really prepared myself for how much recovery time at home there might be after I was discharged. At first after I came out I was sleeping quite a lot – it was quite common to have a couple of hours sleep in the afternoon. Later though, once I didn’t really need the naps anymore, but still didn’t have the usual energy and drive, it was quite frustrating to be at home surrounded by things that I could in principle be getting on with, but didn’t.
On Tuesday last week I had another clinic appointment at Southampton General. I was pleased with this one for a couple of reasons. Firstly, my neutrophil count has leapt up, now being 4.1(!) which is properly back into the “normal” range. The consultant was happy now to leave my next appointment until early October. This will be after my “100 days” assessment – the outcome of the high dose treatment and stem cell rescue is assessed 100 days after I got my stem cells back. That will be another bone marrow biopsy and a bunch of blood tests in late September.
So it’s 9 weeks today since I was discharged after my “high dose” chemo. The first six of those were spent at home, and as I mentioned I’ve now been back at work for three weeks. I generally feel fairly normal again now. I couple of weeks ago my beard starting properly growing again, and it looks like the hair on my head is starting to grow again (at the moment, I’ve got a full, but very very short head of hair). And yesterday I went for my first run since before I went into hospital (i.e. since mid May). I was pleased to be able to do 5km in just over 30 minutes. My legs ache like nobody’s business now though…