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 ManCheckup … KFLC = 679 … κ/λ = 92 … Hb = 10.4 …Anot…
“There is no goal, but only the path.” Taoist saying Recently, my wife and I traveled with friends to Glacier National Park. Our journey through the Northwest included a stop […]
Once you have been diagnosed with cancer, life changes forever. For you and for your family, it is unlikely that you will ever look on life in the same way. Sometimes that can be amazingly positive, and sometimes, sadly, it … Continue reading →
I dare you – The xx
I went to Brixton Academy last week, to see The xx in concert. It was only once I was there that I recalled I had seen them, in the same place, sometime a little over 4 years ago. I know last time round I had to simply stand rigid through the pain until eventually my back went numb. Maybe the morphine had dulled my senses back then, because the gig seemed so much richer and more alive this time round. Echoey guitar; deep rhythmic bass; haunting vocals. Splendid. I love concerts – not least the feeling of having no regard to being the wrong side of 40 (though I take my hat off to the 2 friends who went Sunday afternoon clubbing last weekend. I’m not sure I’d be up for that even if I didn’t have children as an excuse.)
In 2 weeks, Marisa and I are taking the kids to Japan (新幹線温泉寿司). There’s a sense of urgency for us about making adventures, which is definitely a consequence of myeloma. It’s 18 months since we were planning our time in Central America, which really did feel like a snatched opportunity. And yet… time passes and I don’t have a real sense of how long the good times will last, any more. But the longer they do, the more trips we’ll pack in, no doubt, unless something else stops us. Myeloma has made me live more, now, than I suspect I would have otherwise.
Live more, myeloma less. Or something like that.
Having bunked my last hospital appointment, because I was on a business trip (New York, Toronto, Bogota and Mexico City), I had to book this week’s appointment on the phone. The receptionist would only put me in for the end of the Wednesday clinic, which meant 2 hours sitting waiting, and a different doctor. I have to smile my sweetest to get put back on Friday’s appointment list for next time. Friday’s clinic is only for clinical trial patients, a category into which I do fit, technically. But more importantly, if I turn up early on Friday mornings, I’m spared the endless wait.
My light chains are up, but only a little, within the range where variation in results makes the difference insignificant. The κ/λ ratio is pretty much unchanged. All of which suggests nothing much is happening. The κ/λ has moved in a couple of jumps, doubling abruptly in July 2015, and then again in April last year. But since then it has risen only 50%, and been static now for several months. The myeloma is unquestionably there. And unquestionably returning. But beyond that? Pfff. The doctor is happy enough not to see me for another 10 weeks.
We do have a discussion about treatment options. She mentions bortezomib again, possibly in conjunction with a clinical trial drug (venetoclax? – which I hadn’t previous heard of), before another stem cell transplant. (I guess it depends on how long I hold off treatment, as all these trials have recruitment windows. But if not this one, there’ll be another, no doubt.) And after that I’d still be “naive” (her word) to so many drugs – thalidomide and lenalidomide being obvious ones. Which means I’ve potentially 3 lines of what are, by current standards, very conventional treatments, ahead of me. And that could take a number of years to work my way through.
The UK myeloma group on fb, of which I am one of a group of admins, has had a punishing few months. Relapses. Horrid experiences. Deaths. Partly that’s the toll of winter, and many of the patients are older than me (not that this makes things any better, just maybe less relevant to my prognosis). Some of the stories are shocking. Vicious, callous and abrupt. And being young is no guarantee of a better outlook. I am profoundly grateful, and humbled, by my own relatively benign experience of myeloma, and the massive amount of disease free time I have been blessed with.
Myeloma’s horizon seems to be receding, for now, for me. Though it continues to menace. And when it does return it could do so abruptly, I’m under no illusion about that. In the mean time:
The taste just slips awayTaste – RideAnyone for high dose gin therapy?On March 6th 2013, 4 years ago today, I had a drip infusion of “high dose” melphalan; the first part , and really the main event, of my stem cell transplant. (The actual transplant, …
“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, … Continue reading →
Take a slice – Glass Animals
So… reading the runes. There’s new evidence of damage in my upper thoracic spine, and in my lumbar region. But no evidence of progressing myeloma. DrC thinks it is unlikely that the full-body report will show up pockets of mm, given that the spine does not, and I’m happy to accept this as entirely plausible. He describes this as
But I’m a little more sceptical. I explain my concern. Worsening kyphosis? Chronic pain? Is my spine going to keep slowly crumbling? DrC promises we won’t let that happen and says that I could go through more vertebroplasty. I don’t think my current symptoms are sufficient to begin that process. At the same time, I don’t entirely buy the promise. I make a mental note: I must continue to recognise that my spine is weak so… definitely no return to running; avoid heavy lifting or arduous manual activity; and I must do more regular back exercises. That way I hope I can avoid my back getting much worse. At least, slow the process. And maybe I’ll go back to my gp and ask for some more strong painkillers – so when I have a bad day, at least it doesn’t hurt.
At the risk of getting into crystal ball territory, I ask DrC, in light of last month’s KFLCs, whether it is possible for myeloma to plateau after progressing for so long. I’m rewarded with another parable*.
|Cancer gang tattoo?|
“Cancer, is not one thing, it is a number of gangs. One gang may be stronger than the others, and so that gang grows bigger. But it is possible the father of that gang is not a stem cell, but one level lower than a stem cell…”
(the metaphor has somewhat broken down, I feel, but let’s roll with it)
“…in which case it may not be immortal, and after growing, that gang may die. In which case, in a low-malignancy disease, it is possible to see progression stop or even appear to reverse”.
It’s why, he tells me, it’s best to be cautious about treating mm – avoiding treatment that is too early or unnecessary.
Picking up on the ‘low-malignancy’ reference, I risk a question about prognostic indicators, specifically the contrast between my ‘high-risk’ genetics (del17p / TP53, for those who know what that means), and my ‘low-risk’ ISS staging (‘stage 1’ due to low levels of ß2-M). He rolls his eyes as doctors normally do when faced with evidence of patients who have been mugging up. He taps away and confirms I’m right about the genetics (ha!) and that this is indeed bad. But he says his reference to low-malignancy was about mm generally – for example in comparison to plasma cell leukaemia. He also says that my response to transplant has been very good. Average (median) time to progression (“PFS” – progression free survival) is 29 months and average time to treatment is 3 years. Although I’ve been relapsing for ages, I am now nearly 4 years treatment free, and I’m beginning to wonder how much longer I will eke this out. It may be longer than I think.
It is weird living with this complex, mysterious, menacing thing. But while it doesn’t actually bite it is a mental, not a physical battle. And it does at least spur me to live my life.
I stop at phlebotomy on the way out, to have some blood taken. As I leave I wish the nurse a happy new year.
“2017, they say it may be hard year”, she replies.
“But hopefully not for me”, says I.
I head home and research flights to Japan.
* I reckon doctors reading patient blogs would be like actors reading reviews: probably inadvisable. But if DrC happened to read DialM, I hope he would recognise that, over the last few years, I’ve appreciated our exchanges, and his efforts to answer my questions. I quite enjoy the metaphors. (Maybe I could gather all these parables up into a ‘Book of Crapulous’). I certainly value his expertise in his subject, and his continuing to see me. He is the hospital’s head of clinical trials for myeloma. And I am not even in treatment, let alone on a trial. But one day I will be, and I hope I’m still in his care when that day comes. If I seem facetious, it is a product of the ongoing weirdness of a life in myelomaville.
It has been eight years ago today since I was diagnosed with Multiple Myeloma.
October 29, 2008 will forever be etched in my memory as the day that changed the course of my life.
On the one hand, it was as if…
Every year I write this post…..and I make no apologies. This is an amazing day for me to remember as it is the 5 year anniversary of when I had my Stem Cell Transplant…the point at which my myeloma was … Continue reading →
Slow down. Slow down. You’re taking me overThe Drowners – SuedeCheck up: … KFLCs 264 … Hb 13.0 … Neutros 1.6 …My slowlapse continues. If anything the increase in my light chains is marginally decelerating of late. I don’t think I’ll b…