Wednesday, 9 May 2018

DEX

There's no relief. I'm wide awake in my kitchen. It's black and I'm lonely. Oh, if I could only get some sleep. Creeky noises make my skin creep. I need to get some sleep. I can't get no sleep
Insomnia - Faithless *

... KFLC = 466 (18th April) ... Hb = 10.2 ... Neutros = 1.7 ...

<short>

I was finally able to restart treatment last week. The doctor reduced my dose of dexamethasone, as it increases one's risk of infections, and I really could do without any more of those. The first couple of days on treatment were a bit of a jolt. In particular I'm getting some significant neuropathy in my arms, which is unpleasant. I'm also continuing to suffer fatigue if I do too much, and problems with posture to do with alignment in my back, and whatever damage has been done to my ribs.

But these are minor issues, in the broader scheme of things. I am half way through cycle 3, and it's OK. If it continues like this, I believe I will make it to the end of the chemo. I can see the distant light in the tunnel; a tunnel which only a couple of weeks ago seemed entirely dark.

The sun is shining. The world, for all its faults, is a wonderful place.

</short>

<long>

In February, I wrote a little about two of the drugs in my protocol - ixazomib and thalidomide. Treatment for myeloma usually follows a rule of three. There are exceptions. Sometimes less (mono-therapies and two-drug regimes, especially when used as ongoing "maintenance" treatment). And sometimes more (multi-drug regimes such as DT-PACE or ESHAP, typically when other treatments have failed). But, in general, three. One of which is normally a steroid: either dexamethasone or prednisone. I'm on dexamethasone. The dreaded DEX.

DEX is used for all sorts of things, other than myeloma. What differs is the dose. DEX comes in 2mg pills. I've heard people being treated for other diseases who are taking maybe 4mg of DEX. Whereas my protocol requires me to take 40mg, once a week. It was worse last time. My treatment in 2012 involved taking 40mg DEX on four consecutive days each week. The reason to take DEX is twofold. Firstly, it enhances the effect of other treatments: it gets more impact for the Ixa and Thal than if they were taken on their own. And secondly, it has a (limited) anti-myeloma effect on its own. Just taking DEX, on its own, would be better than doing nothing. So, DEX is a standard component of most myeloma treatment plans. And since one can take a lot of it without any life-or-death risk to one's health, so the protocols tend to go pretty heavy on it. We are asked to take a very large quantity of the stuff.

What this doesn't take in to account is how unpleasant it is. DEX acts as a physical stimulant. Many people report problems sleeping, though that aspect doesn't really affect me (I can sleep through anything). But I can't avoid the hyper-verbal, somewhat manic, aggressive, impatient, impact on my personality. Being on DEX is not a sober experience. If I take my pills on a Wednesday morning, then Wednesday and Thursday will be lived under the influence of DEXamania. And, since what goes up must come down, Friday and Saturday will be the corresponding low. It's not nice. I am told that some people take DEX recreationally. But, if one wanted the buzz of being up all night... there are alternatives available that make you happy, rather than angry. Take them, if you want to. Don't take DEX unless you have to. Would be my advice.

The doctor has reduced my dose of DEX to 20mg. I'm delighted, because I hope it will mean that the highs and lows are a little less pronounced.

I try to keep dialm on topic. Under normal circumstances I would certainly not be telling you about the content of my dreams. But this one, from a few weeks ago, the night after taking my DEX, might give you an idea of what DEXamania is like:

The dream begins with a UK government cabinet meeting, only all the ministers are being played by minor celebs. The person playing the role of Foreign Secretary has ginger hair and a beard. The others are calling him "Bedingfield" and I had to look him up the next day to confirm that this was David Bedingfield in character as Boris Johnson. I was a little surprised because my conscious brain didn't know who Bedingfield was. But my unconscious brain clearly keeps better tabs on celeb-dom. (Sadly, I'm all to aware of who Johnson is). Anyway, the 20-odd random celebs (no, I can’t remember who the others were, now, though I think my brain had furnished them all with identities at the time), are busy acting their political roles, but in the form of having become the ministers. It is all decidedly real. Eventually the cabinet meeting breaks up in acrimony with everyone, including me, chasing Bedingfield as though to lynch him for the mess that brexit has become.

Before we catch up with him, I need some money and put my hands in my pockets only to find they are full of the most ludicrous quantity of stuff: plaster cast model palaces, large decorative gold coins, small icon mirrors, plastic superhero models, and so on. Once I have emptied my pockets, I have great piles of these items. My next task is to explain their origins to another friend who has appeared next to me. Given that this is a dream, I assume that, at this point, my brain is desperately trying to back-fill explanations for each thing; all these random details, now requiring an explanation.

So... I swiftly remember an encounter with the small child of friends who gifted me the suoerheroes.

And then... my brain works its way back to recall a visit to a rural French chateau with narrow stairs where some crazy old relatives of a friend had an entire model of 17th century Paris laid out on the floor in an unused upstairs room. They had announced they were getting rid of the model, and so giving away the pieces, and I had picked up and pocketed a selection of interesting model buildings from their display. So: that's the plaster cast palaces explained. Phew!

My mind is just turning itself to dredging up "memories" of the origin of the coins and mirrors, when I am rescued by the alarm clock I had set to wake up one of the boys for an early start for school. Thank heavens for small mercies.

That's a bit what DEX is like: far too much going on in one's brain - every detail both interesting and in need of further clarification. Marisa asks me sometimes, when I'm on DEX and going on and on, whether I am aware that I can't stop talking. And I sort of am aware, but I can't do anything about it because things just seem to need explaining.

So, if you see me on a Thursday, and I go on a bit, it's the DEX talking. And if you see me on a Friday, and I look a bit deflated, it's the DEX down. Now you know.

(Oh, and if you're in the car in front of me, on a DEX day, slowing my progress: GET OUT OF THE WAY YOU MORON. Though I try to avoid driving on DEX days; it's far too stressful.)

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* In case you were wondering why I hadn't used a lyric by Dexy's Midnight Runners... Yes, their name is a drugs reference, but their dex is dextroamphetamine, so it would have been inaccurate, as well as naff, to use a lyric from them "Poor old Johnny Ray..." Faithless, on the other hand, know a thing or two about staying up all night. And they are - like so many great bands - from Brixton, which is always a good thing as far as I'm concerned.

Monday, 23 April 2018

Breathy

We know you feel the world is too heavy, but you can turn it all around if you want. Oh yes, you're in charge of what you feel
It's All Good - Superorganism

It's a bit of a soap opera. In hospital, out of hospital. On treatment, off treatment. Well, unwell. It's hard to keep up!

<short>

I was about to post something last week. It would have told a story of recuperation, body and mind. But before I could post it I had a sudden onset of pain in my chest, and within 24 hours I had had my chemo delayed, again, and been readmitted to hospital and put back on all the IV. I was suddenly feeling very unwell and in a lot of pain. Pleurisy - I don't recommend it. So... I've had another 4 nights in here, and I'm feeling a bit better again. I can return home today, and we revert to the plan.

Keep out of mischief. Recover. And next week, I hope to be back on the chemo.

2018, for me, is fundamentally an ordeal to be endured. I'm OK with that. But this succession of delays - being repeatedly knocked off the plan - has really challenged me. It's been rough, physically and mentally. And none of us is at our best, mentally, when we are at our worst, physically. Today I feel optimistic. But my mind, like my body, has fluctuated.

This last week, I've been sharing a ward with three other guys, all dealing with similarly severe medical challenges. There's been a nice sense of camaraderie. Plus I've felt like the old hand, having been dealing with this all much longer than any of them. It's also enabled me to observe, as others grapple with it, quite what a big deal it is - blood cancer and bone marrow suppression. Maybe I will cut myself a little slack.

</short>

That's all you need to read in order to know how and where I am. (I'm OK. I'm at home. Until further notice.)

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Last week, I went to the brand new Cancer Centre at Guy's Hospital. There's a Complementary Therapy Centre there, to which I have referred myself for a sequence of treatments. First up, I had some reflexology. I'm a pragmatic sceptic, when it comes to these kinds of things. Enough of a scientist to reject the premise of homeopathy, for example. But I'm also sure a bit of pampering can have positive health benefits. Having someone massage my feet was certainly relaxing and soothing.

I found the experience quite emotionally intense, which in large part was a product of feeling so respected, valued, accepted. The Cancer Centre there is really wonderful. It's obvious from the moment you check in that the whole building has been designed with patients in mind. The waiting area is divided into lots of little booths - you can sit and wait in a modicum of privacy, rather than in rows of seats. You don't have someone next to you coughing over you, either. And the decor and furnishings... these things matter. King's is a fantastic hospital in terms of quality of care. I'm very grateful to be treated here. But the Haematology Outpatients dept exudes a very old school hospital aesthetic. After all these years, it would be wonderful if my regular visits could be liberated from the worst excesses of hospital-land.

But the feeling of respect went further. When I went in for treatment, the guy began by asking me a load of questions about my diagnosis and my medical history. I've been for a few massages and visited a few spas, these last few years, and they quite often ask medical questions. Those questions tend to feel prying and impertinent. Why would I want to discuss this with you, stranger? And they also feel like a screening process. At any moment I'm anticipating that too much honesty from me will result in the therapist refusing to treat me. On this occasion, of course, it felt very different. I knew he understood. I felt accepted, for who I am. It was fantastic.

Some of you are probably a little sceptical about Complementary Therapy on the NHS. Should this really be funded out of tax? But for me, there was a value in the holistic-ness, far beyond the fact that it was free. As a token of that, I decided to make a £100 donation to charity - the money I might have otherwise spent in a spa. I have chosen to support Basic Needs - a charity working in mental health in Africa and Asia, in recognition that the benefit to me is as much about mind as body.

---

While we're on the subject of good places to donate money... I was asked recently to write something for Myeloma UK's quarterly magazine, Myeloma Matters. I wrote about the challenges of myeloma and parenting. Here's a link, if you're interested:

Myeloma Matters, Spring 2018

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And finally, facebook keeps reminding me that a year ago I was in Japan, which has cheered me up no end. (facebook might be an unspeakable monopolistic unaccountable tech giant, partly to blame for trump and brexit. But it can also bring joy.) Next year... who knows where I'll be.

So, in homage to the wonders of Japan, here's a picture of my own cherry tree. In bloom, right now, like me!


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Monday, 9 April 2018

Breathless

[Instrumental] *
Breathe this air - Jon Hopkins 

Some scores (not all in the same day, fwiw) ... KFLC = 456 ... Hb = 7.4 ... Neutros = 0.75 ... 

A lot went down, these last few weeks. My light chains went down, fairly dramatically, as a consequence of the chemo. This is good news (and somewhat offsets everything else). But, at the same time...

As anticipated, my red blood went down too - I’ve needed EPO injections and in the end a blood transfusion. Both of which can make an improvement in the short term, but it will take a while for my bone marrow to recover and start doing its job - and we won’t wait that long before I start taking the chemo again, which is in part the cause of the problem. I assume I will totter on with nearly-dangerous anaemia, for a good while yet.

And my immune system went down too. There’s not much that can be done about this. I had some G-CSF to stimulate neutrophils. But it is the adaptive/ acquired immune system that I am really lacking, and all I can do about that is to wait for better days and to try to avoid infection. Myeloma suppresses my immunity, and so do anti-myeloma drugs. After all, myeloma cells are malignant immune system cells. It is going to be an ongoing problem while I’m in treatment.

To top it all, I caught flu, which progressed to bacterial pneumonia, and I lost a significant chunk of my lung function. I was admitted to hospital last week where my blood “oxygen saturation” - which should be 98% - dipped as low as 74%. No wonder I was feeling so shit, the last few weeks. Insufficient oxygen in my too-thin blood, plus an excess of infections overwhelming my impoverished immune system. It has been a miserable experience. Frightening too: this is one of the more likely ways that myeloma kills.

So I spent 7 nights in the haemo ward, on a variety of antivirals and antibiotics as well as a nebuliser to open up my lungs, an oxygen canula up my nose, and all manner of other pills and jabs. They let me out on Saturday. I’m a lot better, though still very neutropenic and anaemic, and I’ve been warned to expect it will take weeks for my lungs to recover.

I think I’d been brewing up my infections for 3 or 4 weeks before I was admitted to the hospital. At the same time I had had some real problems with neuropathy (induced by the chemo), and muscle spasms (which seem to be my body’s panic reaction when things go wrong).

I’m now taking baclofen as an anti-spastic, which has improved my symptoms. But baclofen is a drug with a truly terrifying list of potential side effects of its own. Not least its potential for severe physical addiction, which I will have to attempt to navigate when the right time comes and I want to stop taking it. Medicine is a wonderful thing, but I do hate the fact that whatever befalls me, the answer is always another prescription. The list of things I’ve swallowed or had injected, these last few weeks, is quite staggering.

All in all, it’s been a pretty grim month. As lousy as anything myeloma has ever served up to me. Painful, debilitating, quite scary. And I’ll be keeping a low profile for a while as I (hopefully) recover. I’ve missed at least 3 weeks of chemo, but I should be well enough to start again in another week or so. I can hardly contain my excitement!

* When it’s like this, there are no words


Wednesday, 7 March 2018

Friends

Thank you for the party, but I could never stay. Many things, on my mind. Words, in the way
Thank You (Falettinme Be Mice Elf Agin) - Sly & The Family Stone

Thank you

The last few weeks have been hard. On top of everything else, a virus finally got the better of my immune system at the weekend. In combination with the aches, the anaemia, the endless cycle of drugs, the long time horizon in front of me... it all adds up. I suspect that the relentless bloody anaemia is the real villain. I'm getting by with about a third less blood than my body really needs. I'm heartily sick of the whole thing. No matter how soon now it feels better, it will not be soon enough. I posited an idea to Marisa the other day - conjured out of my imagination - that maybe the sudden death of myeloma cells could be a cause of sickness and pain all of its own. It turns out, with a little research, that this is a real thing - "tumour lysis syndrome". So maybe I'm feeling unwell because there is a lot of dead stuff in my bone marrow, and associated crap swilling in my depleted blood. That's one possible, positive, explanation for where I am. But whatever the reality, I simply have to persevere. It'll be a month or so before we're in any position to review progress.

So... I'm feeling a little better today... my head is above the water... I want to take the opportunity to acknowledge the group of people who are quietly, unobtrusively propping us up, right now.

I'm writing this post to say "Thank You", to you.

You know who you are.

When I'm least well, it actually falls harder on Marisa and the boys, than it does on me. Because they have to keep the normality going. Home life is not the same with a partner/parent who is only half present. One who rarely makes it to the breakfast table. My role, by comparison is straightforward. I just have to take the pills. There's not a lot of point me moaning about it, either. Myeloma looks a lot like laziness - as long as I just lie around doing nothing, I'm normally OK.

So I am very, very grateful to all of you who are doing so many things to make it less arduous for those who have to live with me! You are oiling our wheels by helping the children get to and from their schedules. You are bridging gaps (or papering over cracks) by including them (taking them out sledging, for example, last week). You are ensuring that they get out of the house, and that their lives are not constrained by mine. You are feeding us - heart (cake) and soul (meals). You are there for Marisa to hang out with - whether its a mid-week evening or a last-minute loose-end Sunday. You are making plans with me, and then not caring when I endlessly cancel and reschedule. And a load of other things too.

Taking an interest in us. Checking in on us. Looking out for us.

You are quite a big group of people, which is very flattering. Some of you are further away, from where it isn't always easy to make a hands on practical difference. But it really does make a difference, to us. All of it. Every outstretched hand. I cannot conceive a better definition of friendship. I won't get to thank you all face to face. Anyway, it would undermine the whole interaction if I did. So...

Thank You. All of you. I cannot really express how much it means to me.

Maybe I was naive to imagine that I might sail through this chemo less grimly than last time. Though I suspect, with a little hindsight, this will transpire to have been a relative blip. However it pans out, I know a much more profound "blip" awaits us later in the year when I have to go through another SCT. Only after that will we be able to stand on our own 10 feet again. In the mean time, stick with us, please.

There's some very nice soup in the fridge, which is where I'm going now.

Today is my 5th "birthday" since my SCT in 2013. Almost five years treatment free. Hopefully, that will be the pay off from SCTv2 too. I looked back through 5 years of posts on dialm, wondering about the most important question... which artists get most airtime. Only three have featured three times: Neil Young, David Bowie, and Tame Impala (who are a special case... where dialm started). A few more have appeared twice: Foals, Primal Scream, Ride, Rudimental, Scissor Sisters, Simon & Garfunkel, Teenage Fanclub, The Shins, Smashing Pumpkins. That seems like a fair snapshot of me. My music collection always did have an unexplained overweight to the letters P, R, S and T. Is this relevant? Is it even interesting? I have a feeling the steroids are kicking in again... which will be my subject matter when I next write...

Thursday, 1 March 2018

Thal

Here he comes, he's all dressed in black. PR shoes [*] and a big straw hat. He's never early, he's always late. First thing you learn is that you always gotta wait. I'm waiting for my man
Waiting for my man - Lou Reed

End of Cycle 1 ... Neutros = 1.4 ... Hb = 9.8 ... (KFLC tbc)

<short(ish)>

Those who've seen me around - probably walking a bit unsteadily, certainly wincing - will know my last couple of weeks have not been good. This is in part due to back pain and bone pain. I'm not certain what has caused it all to get worse: whether it is my myeloma progressing; or whether I've aggravated it; or whether it is my body becoming resistant to the painkillers; or whether it is the adjustment/accommodation into the start of treatment. Whatever the cause, it hasn't been much fun. On top of this, I'm feeling even more out of breath than before.

(Plus, I have the ups and downs of steroids to contend with. But more on that another time.)

In summary, not great. I have been reminded - as if I needed it - quite how grim myeloma can be. Though it could, of course, all be a lot worse. And I'm optimistic that the worst of the bone pain is coming back under control. Hopefully the next few weeks will be less arduous than the last.

When I arrive to get my new prescription, the doctors take it all quite seriously. My anaemia is becoming a real concern, but there's nothing to suggest the drugs are making it dramatically worse, so no reason not to continue the treatment. We won't have any meaningful feedback on whether the drugs are working, for another month (they took a blood sample today, but it takes a week to get the result, and anyway, one result on its own won't tell us much). So, we continue on the current course.

They suggest to substantially increase the doses of my painkillers. Hopefully I can return to some quality of life that is a little more bearable. Living "in" it, one sometimes lacks the perspective to see what's going on. It is only when the docs ask me the clinical questions - what is the pain like, how has it changed over time - that I appreciate that living as I have done of late is not OK. It's not just part of the process. It's not my lot in life. It's not just something I have to put up with. It's not just something I have to keep quiet about. Actually, I have a right to expect better, to demand better. Better, in the immediate sense, meaning stronger drugs!

One cycle down, 3 or 5 to go.

</short(ish)>

<long(er)>

A little about the second drug in my treatment triad: thalidomide, of which I currently take 100mg each day. I'm intrigued to be taking thalidomide, because its name is so arresting, so shocking. There isn't a medicine on the planet with a worse reputation. Originally marketed as an anti- morning sickness medication in the late 1950s, thalidomide did appalling damage to the unborn children of unsuspecting mothers-to-be, before being taken off the market again in 1961. Having failed patients so badly in the past, the medical profession is understandably making a significant effort to avoid any more unborn children being exposed to thalidomide. This basically means ensuring those of us taking it don't procreate. I'm not aware of any evidence that thalidomide can affect a baby from its father, but no-one should even want to let that risk exist.

My supply comes in rather glamorous packaging - practically gift wrapped - and with extensive instructions and warnings. The hospital checks up on me too, by asking all sorts of very personal questions. If I were female, they would insist on regular pregnancy tests. I can be grateful of being spared that intrusive indignity. Frankly, it is all a little unnecessary: having managed to have only the children I wanted to, these last 30 years, I have no intention of letting my guard down now.

The thalidomide crisis/scandal served to demonstrate the necessity for proper clinical trials, and to show the need for proper processes to manage and monitor drugs. It is also a striking example of the pharmaceutical industry failing to live up to its responsibilities. It is an important story, but it is not my story.

The reason thalidomide proved so devastatingly dangerous was, ultimately, the reason it was considered as a possible cancer treatment. The deformities in unborn children were caused, we know now, by Thalidomide impeding blood vessel formation. But it wasn't until the mid 90s that this property (called "antiangiogenesis"), was recognised and considered as a possible cancer treatment. Surprisingly, it turned out to be most effective in blood cancer - a cancer where one would intuitively imagine blood vessel formation is not a factor. (Do myeloma tumours have blood vessels?) The pharmacology is complex, and the effects of thalidomide are still not entirely explained. It does a number of things, but we don't really know which of them gives it the anti-myeloma properties. As well as stopping new blood vessels from developing, it is known to inhibit the development of the cells in the body tasked with breaking down old bone ("antiosteoclastogenesis" - just rolls off the tongue!). One of the symptoms of myeloma - the biggest single problem, for me - is that it alters the balance between bone destroying and bone building cells, so that bone is destroyed more quickly than it is replaced. Thalidomide appears to act in the opposite way, but it is not clear whether this helps to explain why thalidomide kills myeloma cells. Maybe it is just a bi-product of interfering in the same processes.

Thalidomide and the other drugs that have more recently been developed in the same family (lenalidomide and pomalidomide, which are presumably working on the same pathways), are not completely understood. We know they work, but not exactly how. You'd be surprised how common that is in medicine. This group of drugs are classed as "immunomodulatory", but given that they are used to treat myeloma, a disease of the immune system, the classification really doesn't tell you much!

Thalidomide is often part of people's very first ("front line") treatment. When myeloma relapses, it is normal to move on to different drugs; the general premise being that the disease is likely to become resistant to drugs it has been exposed to before. As it happens, I didn't take it last time round (because it wasn't part of the trial protocol I participated in). If it weren't taking it now (this time round it is part of my trial protocol), then I think it is quite likely I would have ended off missing it out altogether. That it could easily not have featured in my treatment at all, I find remarkable, considering that less than 20 years ago it was the very first available alternative to old school chemo. That shows how quickly the treatment options have changed and are changing. It is quite likely that I will take its siblings - particularly lenalidomide which seems to have the best combination of effectiveness and fewer side effects - at some point later in my journey.

The side effects of thalidomide are basically that it can suppress bone marrow function. So it can cause or exacerbate neutropenia (weakened immune system) and anaemia. Given that these are problems I already have, there's a risk that things get worse before they get better. That's how it feels right now, with me puffing at even the slightest exertion. Still, I haven't been struck down with any infection (yet) and for that I must be grateful.

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(* PR shoes = Puerto Rican, i.e. "Fence Climbers". Not, as those of us in the trade might incorrectly surmise, Public Relations shoes. Though in spivviness at least, if not in practical law evasion features, the difference isn't necessarily great.)

Friday, 16 February 2018

Ixa

We are the boys who'll drape you in jewels, cut off your hair and throw out your shoes, ‘cause baby, you won't need them, where you'll be
All the king’s men - Wild Beasts *

I figure some of you reading this do not want or need long essays from me. If you’re following simply to know I am ok,  I'm grateful - thanks for caring. For you, a short read...

<short>

Cycle 1 is going ok. The lack of side effects, combined with the simplicity of taking pills, rather than intravenous drips, injections, picc line etc, is leading to something of a reverse placebo effect. The drugs had better work, because I find it hard to believe in them, having been conditioned to old school chemo. It’s a bit disconcerting to find myself taking what appears to be medicine.

That said, the steroids are not very nice - making a mess of my Thursdays and Fridays. But more about that another day. And I’ve been having quite a bit of trouble with pain and spasms in my lower back. My mobility is rubbish, and it hurts a lot. Very frustrating. Still, I'm optimistic the pain will be quelled after a couple of cycles, and if the next few months is like this, it’s not so bad.

</short>

<long>

Still reading? How nice! Even so, I guess you don’t want or need a blow by blow of my days and weeks. Instead, I thought it might be of interest to give a bit of a summary of the drugs I’m on, seeing as I’m in a drug-taking phase of my myeloma. I’m going to start from the top, with the ixazomib. I take one 4mg pill of ixazomib each week, 3 weeks on 1 week off. And if I am selected in the clinical trial to receive "augmented" or "maintenance" treatment, it will be with ixazomib.

Ixazomib is a proteasome inhibitor, which means it disrupts the cell's mechanism for breaking down unwanted proteins. Without functional proteasomes, a cell chokes on its own waste, and dies. All cells need proteasomes, but myeloma cells need them more, as they produce excess quantities of paraproteins. So proteasome inhibitors are particularly bad news for myeloma cells.

The first proteasome inhibitor developed was bortezomib. I took this last time. It was only developed from 2003 so it’s a very new branch of medicine. Before it came on the scene, myeloma had very short life expectancy, and the main drugs prescribed were unsophisticated, generic “chemo”. Proteasome inhibitors are the reason I’m still here.

Ixazomib is even newer - it was only registered as a potential treatment in 2011. When I was newly diagnosed (2012) I kept a list of innovative treatments when I heard about them - part of my armoury towards becoming an engaged patient. (I’ve stopped keeping this list because it got too long - I realised that merely knowing the names of possible medicines was not what would empower me.) At the time I wrote of ixazomib simply
“Ixazomib (MLN9708) (can be taken orally) FDA approval projected 2015."
In fact, approval came a little later, in 2017 in Europe. NICE only consented for the NHS to pay for it as of November - 3 months ago! UK funding so far is for people who’ve had more treatment than me - I wouldn’t be eligible yet, so I’m only getting it as part of a clinical trial. The drug company is providing the drugs. Saving the NHS some money. And a good thing too, as the wholesale price is otherwise £2,000 per pill. (Indeed, that’s how I got my drugs last time round, too - thrifty me.)

Proteasome inhibitors don’t have the potential to be a cure, but they do have the potential to improve responses. The trial is, in part, to investigate whether proteasome inhibitors can improve the outcome of stem cell transplant. It’s part of the transition from chemo to medicine. It seems weird now to believe that in future myeloma treatment may actually make one feel better, rather than worse. Something I look forward to getting used to. Though that is not to discount the one very real and very horrid potential side effect of these drugs, which is peripheral neuropathy - the sometimes permanent loss of feeling in hands and feet. I’m lucky not to have suffered much of this. And ixazomib, taken orally, is less likely to cause neuropathy than bortezomib.

These drugs are miracles, really. I am so very grateful they existed by the time I developed myeloma. The story, otherwise, would probably have been shorter.

The exotic names are striking. There is a nomenclature such that you can tell something about a drug from the end of its name. A “...mib” is a proteasome inhibitor. Other classes of drugs have their own suffixes. For example, a “...mab” is a monoclonal antibody. The syllable before that tells you if it is human (u), humanised (zu) or chimeric (xi). (Chimeric meaning of mixed human and animal origin). The syllable before that, in some drugs, tells you if it acts directly on the tumour (li) or on the whole system (zum). So a “...zumumab” is a systemic, human origin monoclonal antibody. And a “...zomib” is a humanised proteasome inhibitor. So now you know!

So far there are three “...zomib”s in use. The two I’ve had act on the same part of the proteasome - they are functionally the same. Whereas the third - carfilzomib - works slightly differently, meaning it is another potential treatment for me, when I need it. There are several more ”...zomib”s currently in trial, including marizomib and oprozomib. Things to try, one day, if I'm lucky!

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* I'm off to a gig, tomorrow! Pragmatism dictates we’ll be in the seated area. Wild Beasts are a band I’ve loved for a long time, now sadly split. Tomorrow is the last time they’ll play. If this lyric is contorted into a dialm metaphor, then the drugs are the boys (and I am the girl from Hounslow. Hatch me! Hatch me!)...

Wednesday, 31 January 2018

Running

In through a doorway she brings me white gold and pearls stolen from the sea
Running To Stand Still - U2

Baseline ... KFLC = 750 ... κ/λ = 141 ... Hb = 10.0 ... Neutros = 1.3 ... Plasma = 60% ... 

So, two trips to hospital today. First to get stabbed. Second to get poisoned. (i.e. blood tests and prescriptions.)

My blood counts have deteriorated. Light chains and κ/λ ratio are both up, and my haemoglobin is down. My anaemia is getting more severe (and I don't expect the drugs to help, in the short term).

I'm pretty alarmed to find that in my bone marrow biopsy 60% of the cells are plasma. If I didn't have myeloma, it should be <5%. More than half of my bone marrow is myeloma. Yuk. No wonder my bones ache, my blood counts are lousy and I don't feel great. (It's also a substantially worse state of affairs than when I was first diagnosed, and this result would be a sufficient reason, in and of itself, to trigger treatment.)

But regardless of the blood counts and level of plasma infiltration, my bone pain is getting worse by the day. I've had to increase my doses of both oxycodone and codeine, to try to keep it at bay.

It's pretty clear we need to get started.

Today is Cycle 1, Day 1. I've passed all the tests. Get set. And, we're off. The finishing line, for this first part of the treatment will be late May, or mid July, depending on how I get on.

Here's my typical weekly medication (I made a chart so I don't forget to take things!)

And here, in 3D ...

I've already taken my first load of DEX ... a long night beckons ...

Wednesday, 24 January 2018

Countdown

I guess there is no one to blame. We're leaving ground. Will things ever be the same again?
The Final Countdown - Europe *

T minus 10, 9, 8,  7, ignition system started ...

I've had a fair torrent of messages, recently, which has been lovely. Tough too, sometimes, because talking about it makes it real. But lovely, mostly, because I know so many wonderful people. Thank you all, for all your kind words and thoughts. Of course it is real every day, mostly in my ribs, but it is real in a more profound way when I realise how many other people are affected by my lil' ol' 'eloma an' me.

I don't want to overload you with updates every time anyone sticks a needle in me. But right now, if I leave it long, things get out of hand. Questions get asked. So, here it is. I'll keep this reasonably brief.

The BoMB is done. Yes it hurt. Yes, I feel the need to gross you out with a couple of photos. Most importantly, it is done, and I don't have to face that experience again until somewhere much later in the year.

Also done, this Monday, is an echo-cardiogram. That's the one that is disturbingly like having a pregnancy ultrasound scan. (I've had all these tests before. I'm a seasoned pro NHS consumer. Might as well get your money's worth.) I didn't see whether my 'eloma is a boy or a girl. I could call it crude (genital) names of either gender, so maybe it doesn't matter.

And yesterday, a PET/CT scan. Down in the basement. They stick something radioactive in. Then I lie in a darkened room for an hour while it spreads round my veins. I try to alleviate the boredom by reading, but apparently that would cause all the radioactive stuff to congregate in the eye muscles. Presumably it would lead to cool-looking-but-useless images on the scanner. I am admonished by a nurse, and so I have to shut my eyes instead. (Lie back and think of Europe.) Then, before the scan, I am required to pee. I guess this avoids a great big glowing bladder image ruining everything. There's a special designated radioactive toilet. Have you ever peed in a room with a radioactivity symbol on the door? I'm padding this anecdote out with the amusing details because the scan itself is dull.

Finally, today a lung function test. Puffing in a tube. Not much to report. Lung medicine is one of the many disciplines in which King's is world class. But the waiting room in the chest unit is forlorn. A smell of stale smoky breath. Lung disease is treated by society as a consequence of behaviour: a punishment. Blood cancer, by contrast, is romanticised: clean, innocent. **

"What can you say about a twenty-five-year-old girl who died? That she was beautiful. And Brilliant. That she loved Mozart and Bach. And the Beatles. And me." 
Love Story - Erich Segal 

There's not much fair about that distinction. It's all disease. And we're none of us blameless. Still, the chest unit always makes me grateful that I am not required to shoulder the burden of responsibility for my predicament. It's bad enough living with the disease, without the guilt.

"Cycle 1 Day 1" is set for next Wednesday. Then the real pill popping begins. Those who see me out and about should anticipate that I might not be at my best on Thursdays, for the foreseeable future.

The little red sausage is a c.1cm piece of my spine,
removed with a "trephine" (like a surgical apple corer).
The other outputs of the BoMB.
Sucked right out from my deep inside
Before you play 'spot the willy', I'll remind you this is an image of a heart.
And actually not mine, but one I found online.
I'm not supple enough to have snapped any screenshots during my scan
The exciting stuff enters the room
The exciting stuff going in
The exciting stuff going out



* This song fails many of the normal criteria for inclusion in Radio M. It's frankly crass. It qualifies on nostalgia grounds alone, reminding me vividly of the train trip to Paris, when I was 13, on a school exchange. Bad Swedish pop/rock is a dirty secret of mine. One of these days, I'll find a space here for Ace of Base. Maybe Roxette. Probably not Abba.

** For more on the culture surrounding disease, read 'Illness as Metaphor', by Susan Sontag. She observes leukaemia's role as the ultimately blameless disease (a position previously held by tuberculosis, until tb was re-evaluated once it had been discovered to be infectious). All disease is tainted by some assumption that disease, behaviour and character are intertwined. It's easier to perceive illness as consequent on behaviour - risk taking, lifestyle, choices. And implicitly it enables us to take credit for wellness, to distance ourselves by something more than chance. Victim blaming is very persuasive. Sontag also coined the term "Kingdom of the Sick": an expression beloved by me, and also by my friend Wendy, who died last year, and whom I miss sorely.

Friday, 12 January 2018

Talktalk

There are things I want to say, but I don't know if they will be to you
Alcoholiday - Teenage Fanclub

I'm sticking this up here as part of the "complete record" aspect of dialm.

I remember, 5½ years ago, spending a lot of time working out how to talk about myeloma. It is one of the reasons I started this blog. One choice I made was to write to groups of my friends, letting them know the situation. It isn't great subject matter for a letter, but the benefit - for me - of writing it once, rather than saying it endlessly, is huge.

I find myself in the same situation again now. I've just written to a group of my friends. I'm posting it here not so much for posterity, but in the vague awareness that someone else, in a similar position, may find it useful to see how I manage my own situation.

Talking about illness is tricky. I don't believe it is constructive to ignore it. Nor do I want to spend all day every day talking about it. I've learned lots, from other people, about the many different ways people handle it. Some better. Some worse. This is my way. You might find it informative. Or you might think I'm nuts. Either response is fine by me.
Dear friends

This is a bit of an odd letter. Odder for you to read than for me to write because it’s not new news to me.

Some of you know already that I have myeloma - a type of blood cancer. It causes anaemia, poor immunity and damages bones. I was diagnosed nearly six years ago, after I broke quite a few vertebrae in my back while out running. It can be treated, but can’t be cured. I had a lot of treatment six years ago and have been reasonably well since then, but it has been coming back slowly for a while, and I need to have more treatment this year.

I’m not sure how the treatment will affect me (the drugs are ones I haven’t taken before), but I’m assuming I won’t always be at my best! I wanted you all to know so that you understand if I look a bit worse than normal, and if I sometimes can't attend things when I should. (I’ll need to have a stem cell transplant at some point in the summer, which will be a lot more intense.)

I write a blog, which tells the story, for anyone who is interested, but also means people who want to know how I am can find out, without us all having to talk about it. This doesn’t mean it’s a taboo subject, but it’s not anyone’s preferred topic of conversation in the pub either. At least, not all the time.

The blog is at dialmformyeloma.blogspot.com

If you want to get notified of updates, you can either click the link on the blog and give it your email address, or you can follow me on twitter: @alexlondon.

I’ll see you all soon I hope. I’ll take all your good wishes as read, so don’t feel any obligation to reply to this letter, or even to mention it. In my experience, my myeloma gets more than its fair share of airtime anyway.

Alex

Thursday, 11 January 2018

TimeBoMB

Mother, do you think they'll drop the bomb? Mother, do you think they'll like this song? Mother, do you think they'll try to break my balls?
Mother - Pink Floyd

BoMB time

Thought you'd be as delighted as I am to know I'm going to have a bone marrow biopsy on Monday!

Oh the anticipation.

Hopefully, I'll also have a lung function test, another MRI and an echocardiogram. After which, all systems go for treatment!

But only one of those appointments fills me with dread.

They have not offered me any sedation. They never do, though if I insisted on it, they'd have to provide it. But that would require another member of staff, and things are stretched enough as it is. Anyway, there isn't any gas in the little room they use. So if you are to be sedated, it has to happen in the main treatment space, i.e. in public rather than in private. I'm not sure which is worse. At least in private, no-one can hear my screams.

Friday, 5 January 2018

Bad DJ

I got two turntables and a microphone.
Where It's At - Beck

Checkup ... KFLC = 698 ... κ/λ = 116 ... Hb = 10.2 ... Neutros = 1.60 ... 

Lyndon got a set of digital decks for Christmas. They're very cool, though it will take him - and me - a while to get any good at syncing two tunes. I have the same problem more generally.

On one deck, spins Christmas - presents, drinking, going out, staying up. I'm not a fan of novelty records, nor reindeer, nor turkey, but I love the family time, playing games and hanging out. On the B-side, New Year has always been good to me. This year, quietly. And then, spin the next disc, we're into the winter season, kids at school, Marisa back to work. The discs stack up; seasons ahead; 2018 in a playlist.

Meanwhile, on the other turntable, I've found myself returning, more rapidly than I was ready for, to the Kingdom of the Sick. And this one's definitely a long player. Painkillers have gone from occasional to regular. Symptoms I'd largely forgotten have re-emerged - most significantly in interrupted sleep; but also in rib pains and spasms, restricted movement, discomfort going from sitting to standing, fatigue and so on. I'm popping pills merrily: oxycodone, co-codamol, amitriptyline, adcal - up to ten a day. And I'm squaring up to the treatment I now clearly need. Today I sign the consents for "Myeloma XII". Next week I'll have a BoMB, and various other tests. Cycle one day one - my first dose of ixazomib, thalidomide and DEX - is probably just three weeks away. I am the first patient at King's to go on this trial (though there are others, elsewhere, ahead of me.) It's a phase III trial - we know the drugs work. But DrC reminds me today, in no uncertain terms, that he really doesn't know what happens if one takes these drugs in the combinations they plan for me (particularly the "augmented" transplant part, if I end off being randomised for that).

I'm not doing a great job of mixing the two tunes. Their rhythms are too different, their melodies clash.

We hosted a pre-Christmas party, 24 hours after I'd changed my painkillers. Foolishly, I ignored the warnings on the label, forgetting that my tolerance levels would be low. Those who stuck around to the end - and my family who had to share the following day with me - saw how I messed that up. Just one visible demonstration of a deeper ongoing issue for me - I'm leading two quite disharmonious lives.

I've just two new year's resolutions for 2018
1) Stay alive
2) Stop chewing my nails

So far, #2 is proving harder. But it's peculiar - and not easy - to look at the year ahead and know that my doctors' hopes for me, my family's hopes for me, and my ambitions for myself are basically just to get through it. I'll do my best to sync to the other deck, to participate in the lives of those around me, as I can. When I mess up, which I will, I'm sorry.

Pick yourself up off the side of the road, with your elevator bones and your whip-flash tones. Members only, hypnotizers; move through the room like ambulance drivers.
Where It's At - Beck

Friday, 8 December 2017

A plan for 2018

You understand, I got a plan for us. I bet you didn't know that I was dangerous
Dangerous - Big Data

Checkup ... KFLC = 676 ... κ/λ = 122 ... Hb = 11.6 ... Neutros = 1.16 ...

Today, as I expected, I’m told that my next appointment is probably the start point of treatment. I’ve been told this before, but they seem to mean it this time. They’d have started today, but for the practicalities of Christmas: low staff levels for them, domestic priorities for me.

I’ve been experiencing a reasonable amount of rib pain and quite a few muscle spasms, these last two weeks. I’ve had to increase the frequency with which I take painkillers, and I’ve started taking amitriptyline again to defuse the spasms. The doctor seems pretty certain that these symptoms are evidence of progressive disease.

In terms of blood counts my κ/λ ratio is (again) above the threshold which separates smouldering myeloma (no treatment required), from symptomatic (or likely to be symptomatic in the very near future) disease. The change in the ratio is largely because my lambda levels are down - which could itself be a sign of mm crowding other cells out. Also of concern is my low calcium - for which I have been prescribed vitamin d; and low neutrophil level, which puts me at increasing risk of infection. The consultant says it will be easier to treat me - especially in the context of the trial - if I can avoid contracting pneumonia (or something else) at the same time.

So I expect to sign the consent forms on 5th January, and then there’ll be 4 weeks of tests, meaning I will start treatment proper at the beginning of Feb. This would mean SCT somewhere between June and September, depending on how things go. (And I’ll be up on my feet by next Christmas, yay!)

It doesn’t take long, living with rib pain, to remember exactly how bad myeloma symptoms can be. If the symptoms persist, I’ll be keen to just get on with it now.

Sunday, 26 November 2017

Cloudy intervals

Cloudy. The sky is grey and white and cloudy. Sometimes I think it's hanging down on me
Cloudy - Simon & Garfunkel

A follow up on the path ahead, and my state of mind

I thought I'd share a few excerpts from my most recent take home reading matter - the pre-read participant information sheet for the Myeloma XII (ACCoRd) trial I am heading for. It might help give definition to the cloud I'm under.

Firstly, here's the synopsis of the treatment duration. At a minimum it would be 5 months. But, depending on how I respond and how I am "randomised" it could be 7, plus 2 months recovering from the SCT, plus 2 further months "consolidation", which would be 11 months. So, I don't know how soon I'm starting, and I don't know whether I'm in for less than half a year, or a whole year. And that's without considering whether I will end off taking "maintenance" drugs indefinitely. Last time, I was so ill that time hardly mattered. This time, a year is tangible children's milestones, holidays, work schedules. All of which are up in the air while I don't know when treatment will start or end.

Next up, here's an opening salvo on the treatment medications and potential side effects...

"The risks... are not well known". Never forget: you're on a clinical trial, not a tried and tested treatment. No-one knows how this will work out. And, assuming there are no unanticipated interactions to consider, then at a minimum, here are the likely side effects of the three drugs in the protocol. I'm reasonably phlegmatic about all of this. Still, it's hardly a reason to smile in the morning.


That's what's clogging up my head, preventing me making any plans, clouding my future beyond the next few weeks. I guess some of the dialm audience - myeloma survivors and others who've experience of recurrent cancer - will understand this. For others, it might be hard to truly take in.

When I was diagnosed, I was haunted by fears of dying. These days, that bothers me much less. Partly because I've got used to it, and partly because I know that I'm not actually that likely to die, in the short term. It's the process of living with myeloma that I have to reconcile to, now. Like anyone grappling with their own mind, I have experienced troughs of deeper darkness, and periods of greater positivity. Right now, I'm fine - I can put it all in perspective.

I don't know if writing this up will elicit horror, pity, compassion fatigue or what. I'm putting it here for one reason only: that I want dialm to be an honest, unfiltered account.

Friday, 24 November 2017

Sunny intervals

Hey sunshine, I haven't seen you in a long time. Why don't you show your face and bend my mind?
Cloudy - Simon & Garfunkel

Checkup ... KFLC = 641 ... κ/λ = 95 ... Hb = 11.2 ...

I've hesitated to post this. It's 2 weeks now since my last appointment, and more since I wrote much of what follows. It seems bleak to blog negativity, when really I should just be grateful for each month I keep out of the chemo unit. But life is more complex than that.

My 'eloma appears to have plateaued at the most sensitive moment. Yet again I don't quite tip the balance for treatment, despite last month's advice to the contrary. It's hard to complain - the immediate upshot is a chemo-free Christmas for me. And it is looking increasingly as though I may hit five full chemo-free years since my SCT. What's not to like?

Clouds, and also sunshine. Vilnius
Except...

I would love to say I've kept positive, these last few weeks. I'd love to say I can see the purpose, beyond the ordeal. I'd love to boast of maximising the value of my time, of the things I've gone out and done, of the fun I've been to be around. But I would be lying.

I'm conscious, often, not to make special pleading for mm. (There's plenty of other shit dealt out.) But it does have its own exquisite features. Unlike last time, I can see what faces me in its entirety: because I'm not preoccupied with the shock of diagnosis, or the ravages of advanced symptoms. But instead of making it easier, it somehow makes the transaction - the cost, and the benefit - more stark and less appealing.

If the past is any guide, the next few years could be thus:

  • 1 year treatment - chemo and SCT
  • 2(+) years remission - dormant mm accompanied by fatigue and every passing virus
  • 2(+) years relapse - with the clock ticking loudly

And then, with a following wind and a bit of luck, I'll be back where I am now.

I ask myself which of those three phases is the best one to be in.
I guess the answer should be "remission"...
But I've actually felt much better physically in the last couple of years - less fatigued, less jaded...
So I'm tempted to answer "relapse"...
Except I'm haunted by the endless check-ups, discussions, the impending doom...
In some ways "treatment" is the easiest phase...
It's clear what the objective is, and everyone rallies round in support....

But what kind of insanity is that! Am I willing myself into chemo? Everyone knows that being on chemo sucks. If I'm even entertaining the thought that it might make me happier, then I must have lost my mind.

When I first researched myeloma, all those years ago now, one of the things that fixed in my head was the description of hypercalcemia symptoms as "stones, bones, groans, thrones and psychiatric overtones". It didn't seem at all surprising, to me, that the various painful and dignity depriving symptoms would between them tend to impact mental health. (And hypercalcemia is but one component of myeloma.) It's easiest to restrict conversation to talk about the physical indignities, of course. I reckon I'm pretty mentally robust, if I'm honest, but the endless assault of myeloma is still tough.

(Sorry for all the moaning.)

I'll post a follow up, in a couple of days, about the treatment ahead.

Monday, 16 October 2017

Inconclusion

How many times can we put ourselves through this war, like all the lovers that have been here before? How many times can we watch this fade into nothing?
Fade to nothing - Rag'n'Bone Man

Checkup ... KFLC = 679 ... κ/λ = 92 ... Hb = 10.4 ...

Another set of frankly inconclusive blood results. The κ/λ ratio is up, but not (yet?) above the threshold. My light chains are up more significantly - their highest level since 2012 - but this potentially means less than the ratio. My anaemia is a bit worse, but not yet disastrous. It seems my mm doesn’t want to make the choice about when to start treatment.

I can’t help wondering, given my myeloma’s behaviour, how long it was like this before I was diagnosed. As of next month, my "relapse" will have lasted longer than my post transplant "remission" (28 months remission, 27 months relapse... and counting). If my mm is this ponderous, it seems unlikely that it emerged from nothing to nearly kill me in just 2 or 3 years. I think I might have had it for even longer than I’ve previously assumed.

In clinic, yet another doctor. Since I moved from my regular slot with DrC, I’ve not seen the same doctor twice. This is a simple consequence of pressure and stretched budgets - the clinic barely keeps its appointments; trying to match patients to doctors would tip it over the edge. I’m sure tory ministers don’t take this into account as they squeeze out "efficiency". But my dignity is sacrificed by the repetitive need to explain my symptoms, the endless investigations, and the looming treatment decision. My grumblings lead to a visit from the head consultant. And the upshot is this: the preferred treatment for me is a clinical trial (Myeloma XII) that is only just about to begin at Kings. Once it’s ready, they’ll want me on it. No more waiting on my blood results: the cumulative risk of kidney damage meaning it’s not safe to sit indefinitely in the current position. So in the end, it seems, the trigger to treat will be a drug protocol, not my health. Funny thing, life.

The clinical trial could involve as much as 10 months of chemo, sct and more chemo, depending on my response and how I get “randomised”. It’s a big journey to set out on, and will mess up much of 2018. Whether I can string the start date along another 2 or 3 months, who knows.

In a side plot, I’ve been having my kidneys investigated for potential disease or stones. The latest instalment was CT scans, and I’m hoping for the all clear. The pain appears to have passed - along, I’m assuming, with the stones. The consultant here says if the CT is clear, she'll discharge me. If I don’t get an all clear, the next investigation would involve a camera into my bladder, and I don’t like the thought of how they’d get it in there. So, here’s hoping.

The digested read of all this is simple: it is pretty much inevitable I will be back on chemo very soon now. That doesn't exactly fill me with joy. But for now, the watch and wait continues. I'm doing my best not to care or obsess; to live each day; not to waste the time I have; to keep positive. It's hard.