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.


Anonymous said...

Difficult, and ultimately your decision, what are the alternative choices both now and in the near future? Some more info: I assume you have looked up Ninlaro on the European Medicines Agency website?

Perhaps try listing the risks, rewards and alternatives, but also be wise to motivations and try to keep your options open?

The above is probably not very helpful, but hopefully some more 'grist to the mill'.

Alex Bicknell said...

Thank you. The treatment choices, actually, aren’t too many or too difficult to discriminate.

The NHS would put me on bortezomib and/or lenalidomide. Given that I am “naive” to thalidomide (which I would have had already, had I not been on a trial last time round too), I think it is probably smarter to take that and save the lenalidomide (they are similar) for later on.

As for which proteasome inhibitor (bortezomib, carfilzomib, ixazomib) is most effective, it’s hard to determine from the data. Ixazomib has shown significant effectiveness against high risk cytogenetics, which is a plus. But whether it is better than its predecessors, who knows. Velcade served me ok last time, though with some side effects. Ixazomib has the advantage of being taken orally rather than intravenously, which will reduce the number of hospital appointments.

Ultimately, I’m still assured that stem cell transplant is the single most effective therapy, and I believe being on a clinical trial is a smart place to be even if only for the higher level of care. This trial offers the potential for consolidation and maintenance treatment - neither of which I could access otherwise and both of which I anticipate being a benefit. On that basis I’m pretty confident that this trial is the right one for me at this stage.

So, in the end it’s not so much of a choice as it might appear. The biggest challenge is accepting the reality, and - right now - living the uncertainty.