I think, at last, things have turned a corner. So it seems appropriate to bring you up to date.
I was on ixazomib & thalidomide from January until September last year. At the end of treatment we thought it had worked, if not amazingly, at least adequately. But in October the doctors decided that the response wasn’t good enough and we needed to do something else. Looking back now, it is clear from my results that the treatment worked for a brief while. But having reduced my light chains by 50% after the first 4 months, it stopped having any effect, and by the end they were going up again.
I started on lenalidomide & cyclophosphamide in November. After three months, this seems to be working, though my myeloma insists on making it a two steps forward one step back experience (only once in the last year have I had 2 consecutive “good” months). At the end of cycle #2 my numbers were going the wrong way again, and my nurse was forewarning me that the likely third line of attack would be to switch to a regime called DT-PACE. Chemo is never easy, but I’m terrified of “intensified” protocols like DT-PACE, which consists of 6 drugs, continuous infusions over multiple days, and requires hospitalisation for part of each month. And anyway, there is a negative prognostic implication every time my myeloma it resistant to another drug. Especially so for lenalidomide, which is one of the real workhorses of myeloma treatment. So I was intensely relieved, yesterday, to find another big drop after cycle #3. Two steps forward, I hope.
I know it is entirely possible that cycle #4 will go the other way again – my myeloma’s most distinctive feature is utter unpredictability – but I’m cautiously optimistic. My light chains (199 @ 24th Jan) and k/l ratio (24 @ 24th Jan) are now the best they’ve been since early 2016. And, although I know my subjective experience doesn’t always align with the numbers, I have been feeling so much better, the last few months (pretty much since I started on the new regime), that I am inclined to believe that these drugs have now knocked out areas of myeloma that had until recently stubbornly refused to succumb.
My current expectation – though this changes all the time – is that I will continue on this regime until the end of April, and finally be ready for stem cell transplant in May.
A couple of months ago I found myself doubled over in pain that turned out to be a kidney stone. I’m pretty certain that this is the third time I’ve had kidney stones since my myeloma diagnosis. There’s some disagreement between my medics about how likely myeloma is to cause kidney stones, but I believe this stone was calcite, and I live in a permanent state of calcium supplements and with a disease that deposits calcium in the blood… it seems reasonable, to me, to point the finger at the myeloma. One facet of myeloma is its ability to cause such a wide range of knock-on issues. One has the sensation of making incremental visits to more and more corners of the hospital. So, off I go to the awkward and embarrassing men’s problems clinic. On previous occasions, I must have passed my stones. But this one was too big (8mm): I had to have it operated on this week. It’s best not to think too much about the operating process, and just be grateful for the general anaesthetic. Suffice to say they gain access without making any incisions. When I woke up they told me they’d left a “stent” in the tube between my kidney and bladder, with a string to enable its removal. I’ll admit to not feeling quite right while I had this string hanging out, and I was glad to go get it removed yesterday. I was shocked to see the stent: I hadn’t imagined it would be about 30cm long. Having that pulled out of… well, it’s done now.
Life (quality or lack thereof)
I won’t dress it up: last year was awful. My time on ixa/thal was grim. I was hospitalised twice with flu and pleurisy. I had a lot of physical symptoms and side effects: a bunch of new rib fractures (including my sternum), a lot of bone pain, posture problems, shortness of breath and generally feeling unwell. I had no energy. If anything, the mental side effects were worse. It was only after I stopped taking the drugs that I realised quite what they had been doing to my head. I was, I’m certain now, suffering treatment-induced depression, to the point of being suicidal. (It’s not hard to be suicidal with myeloma. The train of thought goes something like “You have no quality of life. The only reason to go through treatment is to be around for your family. But when you feel so bad, what good are you to them? So… what are you going to do about it?”) It was only when I came off the drugs that I gained any perspective on what had just happened to me. I’m sure plenty of people observed, during the course of the year, that I wasn’t in a good place. But, one inevitably bottles a lot of it up. I can recall thinking that the only useful function I could serve in my family was to carry my burden quietly, so that Marisa and the boys didn’t have to share it with me. So… that added loneliness to the symptoms. It was just horrible.
The good news is that the current drugs don’t seem to give me any serious side effects. I’ve had some problems with neutropenia, which is pretty common on lenalidomide, and could be dangerous if not managed (I’m taking G-CSF several times a week to counter it). And I still get the ups and downs from steroids, which is no fun for me or those around me. But these are minor things in the broader scheme. I have energy. I have motivation. I am largely pain free. I no longer crack ribs every time I stretch out my arm. And now the kidney stone is gone, too.
It has been nearly 18 months now since I was able to work, and I am very, very bored. One consequence of my myeloma’s zig-zag response to treatment is that I never know what’s coming. I started treatment thinking I’d have a transplant in summer 2018. As recently as October, I thought it was imminent – in which case I’d have been back on my feet (with a following wind) by now. Now it seems that it will be 2019. But only last week, I was steeling myself for yet another change of treatment and prognosis. It’s impossible, with all that going on, to commit to anything. Just when one gets to the point of making any kind of plan, or pledge to oneself, something unanticipated (and usually awful) comes along to wreck everything. When you think you’re trapped in an endless cycle of miserable, painful experiences, you lose all your willpower.
I’m certainly not robust enough that another knock back wouldn’t have exactly the same effect as has happened to me repeatedly during the last year. So, if this proves to be false hope – if the last downward zig were to be offset by an upward zag next month, and I were to fall back into despondency (which I most certainly would do), then you can read all of this as a cry for help – not just from me, but on behalf of the people who have to live with me.
But maybe, just maybe, I have finally turned enough of a corner to put this particular phase behind me. I feel I can tentatively begin to imagine doing things. Living. Which is, after all, the point.