Brexshit

Like brexit, myeloma doesn’t go away just because you’re fed up talking about it. I’m conscious that plenty of my friends deserve an update – so I’m posting “from beyond the grave” of the blog. I’ll try to keep it brief.

I’ve spent the last 2 months doing all the prep for transplant, which was scheduled to go ahead on Monday. However, this week, my doctors have reviewed my position again and decided on a different course. My response to treatment has hovered, since about June, on the borderline between what they would call “partial response” or “minimal response”, making the decision of what to do next a marginal one. Their advice – this week – is that it would be better to change my treatment and try for a better response, before transplanting. So I am about to begin on a new regime – cyclophosphamide, lenalidomide and dex – for at least 4x 28 day cycles. (In the process, they are taking me off the clinical trial I have been on. But given the patchy impact of the drugs, it doesn’t much matter to me whether I’m on the trial or not.)

Aside from the awfulness of having this all sprung on me in the last days before transplant (and that has been a pretty horrendous experience), it means a few other blunt truths have to be faced:

  • We are basically back to square 1 (though in a slightly healthier position); beginning chemo with the intention of transplanting in 4 or 6 or 8 months time. The last year and all the side effects have been, if not “for nothing”, then certainly for “not enough”.
  • If myeloma treatment is a matter of firing a succession of bullets, each representing one line of treatment, with the aim of firing the fewest bullets over the longest time, and so prolonging treatment options, then we just fired another bullet.
  • Rather than imagining myself surmounting the “final hurdle” before easier times, I must face up to the fact that I may well be on chemo now forever. My doctor talked explicitly today about how we might ensure I am able to continue my chemo after my transplant (as and when that actually happens).
  • I had already written 2018 off to treatment, now I must assign 2019 the same way. I’m not overly optimistic that some future year might miraculously not be dominated by treatment of one form or another.

All pretty grim. I begin my new regime in a week’s time. I’m hoping the side effects will be a lot less severe than the last treatment.

Thanks to everyone who has committed time to supporting us in the weeks ahead. We will need different support from what we had anticipated. I will need to work out how much I am capable of, in the next phase, and then get my head round what kind of “life” exists, beyond popping the pills. I can’t see that far, just yet.