Thursday, 31 January 2019

A corner?

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.


  1. Good luck to you Alex - I hope you do turn your corner.
    Thank you for your ever articulate and thoughtful writing.
    (wife of 47yr old MM sufferer, diagnosed Jan 2018)

    1. Hi Reeva
      I do worry that my second-time-round stories are quite alarming for those who are more recently diagnosed. I hope your partner has had a good response to initial treatment... and gets long remissions. Make the most of the good times. (I’m at a travel show today - when the current ordeals are over, it will be backpacks and boarding passes again for me, I hope!)

    2. Well, being the type who, for better or for worse, always 'needs to know' I find it useful to 'read ahead'. Never heard of MM before, now I think I could do a Masters in it (well not really, but you know what I mean.) I was pleased to discover your blog because you seem to be a London-ish based person with a young family too (I like your song lyric headers too...)

      Yes, I feel we are in a period of relative calm atm. Husb is doing very well on the Cardamon trial (Carfilz, cyclo, dex) at Guy's - just starting 18 mnths of maintenance chemo. He has insisted on working throughout (he didn't have a SCT but was randomised for 'consolidation' chemo instead) but some pastimes have had to take a back seat (going abroad, camping, music festivals...). Know what you mean about planning things with some intrepidation.

      The travel show sounds fun. I hope you get to pack that backpack, I'm sure you will - I look forward to reading about your travels.

    3. Yes. I’m 45, and live in Lambeth.

      I know others on Cardamon - I hope it works well for your husband. Though I know the maintenance protocol is quite tough, because it demands so much time in hospital.

      I worked through my front line treatment, as well as completing a PGCE “in my spare time”. And I continued to work quite hard after too (though I’m self employed so I had flexibility). It’s been harder second time, in many ways, and I know the next remission will require adjustment by me - no way I could work to the same intensity, and anyway I no longer want to.

      I’m a believer in being an informed/engaged patient - knowledge is power. That’s a large part of why I ever wrote this blog.

    4. This comment has been removed by the author.

    5. Gosh so many younger-aged people getting this awful disease. Amazing about completing the PGCE.
      I spoke too soon about husband. Been at Guys all day: 2 pulmonary embolisms and chest infection. He’s been in agony but sorted with drugs now (hopefully).
      Yes you guys have to learn to pace yourselves. Take care.

  2. Gosh, Alex. So sorry to hear what you’ve been going through. I endorse your one day at a time approach to handling the emotional strain, especially on your good days. Wish you could come stateside where the treatment options are more robust. Meanwhile, sending mental energy from a fellow traveler across the pond!

    1. I don’t think it’s the options, so much as the difficulty of monitoring light chain myeloma, plus the stubbornness of mine, plus some bad luck that ixazomib didn’t work for me. From May til Sept my numbers leapt around so that the consultants were of differing opinions as to how things were going.

      And one of the drugs - thalidomide I think - clearly didn’t agree with me.

      I was glad to see from your blog recently that your many ordeals have been worthwhile. Long may the good news continue.

    2. Thalidomide hss seen its day as a front line drug and been replaced by at least two generations. I see you’ve tried one (revlimid) which should be much more tolerable and effective. Wonder if it might be worth your while to travel here for a consult with docs that are on the front line of treatment. I do think your options there are limiting your progress. Just thinking out loud.

    3. In hindsight, I could have done without the thalidomide. Not sure why it was in the trial protocol at all tbh. I guess I just figured it was another “bullet” and so no harm in trying. Given what I know now, I’d be more wary.

      The real issue with healthcare in the UK is it is overstretched. What let me down this year was nursing care - effectively my treatment was only being managed by clinical trials docs and researchers, but no nurse.

      There’s much to be said for public funded health care - no matter what I need, I know I can just turn up and it will get done.

      There are two downsides. One is that decisions about cost effectiveness are made on a collective basis and I can do nothing to influence them - what’s available is determined by the NHS. It gives an added incentive to participate in trials as these can side step the rules. Though, I’ve learned this year, being on a trial isnt always better.

      The other downside is that stretched resources can affect levels of care. That’s got much worse under our current government, sadly. (At least Donald Trump doesn’t set your hospital’s budget!) However, in the main I’d say the level of care I receive is remarkable. I am fortunate again now that I have been assigned an excellent nurse, and I think that makes all the difference. I live within walking distance of a hospital which is at the forefront of haematology (it conducts the most scts of any place in Europe, for example).

      It would be very interesting for any of us to be able to spend time in each other’s health systems and see the difference - I’d love to get a consultation by a doctor in the US. I wonder if there’s any way I can orchestrate that for myself. Similarly, it would be interesting if US patients could experience the NHS, and see how it stacks up. (Your media’s portrayal of our health system is openly dishonest.)

      My treatment plan (to the extent that we waste our time discussing things on this kind of horizon) is basically to work through the drugs one at a time - so, lenidomide, then daratumumab, then pomalidomide etc. I kind of assume this is all a holding pattern until the right time comes to try CAR-T - hopefully I can wait until it is at least on phase III trials (currently my hospital is doing it in phase II). If anything, my experience this year shows that jumping to the “newest” drug isn’t always right.

      And the practical alternative to the path I have taken? I could have had a lenalidide regime 7 years ago... in which case I’d probably be refractory to it by now. This way round has the advantage that, if one only counts the “novel” drugs, then I’ve only exposed my myeloma, so far, to two (bortezomib and ixa).

      Maybe I’m justifying the UK health system (which I passionately believe in). Maybe I’m justifying the “slowly slowly” treatment plan as opposed, for example, to “total therapy”. I don’t know which of those 2 routes is better - but I made the choice years ago. The alternative (more drugs, backed up with an allo as front line treatment) would have been available here, I’d just have had to move myself to a hospital where the consultant believed it was the right thing to do. My consultant convinced me that the hidden risks in that route weren’t worth it, and that if one could hang on a while, functional “cures” (eg CAR-T) were not far off.

      I’m not sure if my response here is objective, or merely a justification/defence! (You’ll have seen enough about brexit to know that self justification and a refusal to consider other views or counter evidence is all the rage here!)

      I blame my myeloma, mostly. I’ve never had a really good response to any drug. And only being able to track it through light chains means you never quite know where you are.

      But the good news is that, right now, I’m on a treatment that works (I think). And that my previous experience is that SCT bought me a long remission. And that there are still quite a few treatment regimes ahead of me...

  3. Always here if you need a chat.

    1. Thanks mate! Was on the CDU yesterday and looked to see if you happened to be there too... Let’s catch up next week

  4. Alex, stick in there.
    There are so many therapies in trial and in development. I didn't respond to Revlimid nor Daratumumab but I'm still in stringent remission from my BCMA treatment. I hesitate to write that...well you know. Good to hear from you again


    1. Glad to hear it (and from you!)

      The hardest thing, of late, has been how my results seesaw - never 2 consecutive reductions... it just keeps you relentlessly on edge. That and the impact of that poison thalidomide.

      It’s good to know BCMA works so well for you - a very encouraging sign for us all.

      It isn’t dying that worries me, it’s fear of having a shit time while I’m alive! So, I’m much chirpier now I’m on something that (I think) works and I’m feeing better. And yes, as you wisely point out, more option ahead.

    2. I'm quite surprised they put you on thalidomide. Normally they plump straight for Revlimid now days. This may be of interest, you'll know about the CAR T cell treatments on the horizon, my specialist Rakesh Popat who is very cautious has been known to use the word 'cure or near as damn it' in relation to this. Incidentally the last paragraph talks about the immunotherapy BCMA trial I was on.

  5. Hi Alex, nothing to do with Myeloma (more 'imagining doing things'), but after two years staring at my Laptop screensaver, I noticed it was a place I had been to before – the Archway Islands in South Island, NZ, close to Golden Bay. I am only mentioning it as Golden Bay was mentioned in one of your previous blogs. Hopefully we will all get a chance to return there one day. Did you ever go to All the best, Stephen

    1. No, I haven’t quite been as far as Wharariki. I have/had dreams of walking across the top of the South - the Heaphy track and other paths and routes through Kahurangi. It may still happen! The coastline, and the forest, are both sensational, aren’t they?

  6. I do miss NZ very much and it is very beautiful, but after eight 24 hour round trips in a two year period working out there, I can no longer spend more than 3 hours on a plane now that I am back in the UK. The South island sand flies can be very aggressive and the North island mosquitoes too, perhaps one day though. Stephen