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….
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…
Continuing the trend of a rollercoaster experience of good running days and bad running days, I was pleased to have a good ‘un at lunchtime today. I suspect this was at least in part due to the fact that a Friday is a dexamethasone (steriod) day for me, which is good for a pick-me-up (or “cheating” as my sympathetic running partner put it). It may have also just been that the stars were in the right alignment and the wind was in the right direction – I’ve not really worked out how to predict when it’s going to feel easier and when harder.
Anyway it was my usual ~5 miler from work at lunchtime, out over the Northam bridge over the River Itchen and back over the Itchen bridge. I even managed to pull away from my running partner as we climbed back over the tall arch of the Itchen Bridge and only extended the lead in the last 1/2 mile back to the office. Great feeling – I always used to be able to find more in the tank when I needed it, and it’s been a sobering experience to lose that ability of late. Really looking forward to getting through all this treatment and working on getting some more fitness back next year…
Spurred into action by my recent experience of struggling to run what used to be a pretty easy pop-out-at-lunchtime distance for me, I went out for a ~30 minute jog both days last weekend and on Tuesday this week I went out for my usual ~5 miler from work. None of them were very easy. I think I am certainly a bit out of practice, which doesn’t help, but I think that the more significant factor is the reduced performance of my cardio-vascular system most probably attributable to the amyloidosis. It just feels like the oxygen isn’t getting down to my legs like it used to and the urge to stop and walk sections is very strong (and I typically do several times). I notice that I’m very sensitive to the gradient – anything at all uphill is very hard to sustain. Anything even slightly downhill feels pretty good and I feel I could maintain that for quite long distances. Notoriously difficult to find jogging routes that finish where you started that are anything over 50% downhill though 😉
I have an appointment next week with the cardiology consultant, so it’ll be interesting to see what he has to say, especially as when I last saw him back in May I didn’t feel that my condition was affecting my ability to run to any significant degree.
For the time being I think I just need to keep getting out for jogs as often as I can. I have found that a run is easier if I focus on exaggerating my breathing in the first section, whilst the body warms ups and gets going. The strange thing about the oxygen-isn’t-getting-there experience is that I’m used to doing this to myself intentionally, and in the past my heart and lungs have responded by just pumping harder, but now it seems that my breathing rate and depth increase though not to the extent I feel they should if my legs are requesting more oxygen. That’s weird / annoying as I can breath harder if I intentionally choose to do so, and it helps, but I don’t seem to be triggering this response automatically. Practice, practice, practice.
Here’s an example of what I used to be capable of, back in my fit, child-less, illness-free days in Hamburg, taking part in the sprint distance of the Hamburg triathlon (0.5km swim/20km cycle/5km run). If I recall correctly I knocked this one out in just over an hour. Wow… how times change. Something to aim for for next year maybe when this treatment is behind me?
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.