Friday, 26 October 2018

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.

5 comments:

  1. I guess that is the downside of clinical trials. In many cases the motivation of the trial can be to prove how well the drugs actually work, are they cheaper to purchase and prescribe etc, and the patient is just a human Guinee pig in what is often a commercially driven process. Sounds like the Doctor wants to use something more tried and tested with a higher probability of working. Let’s hope for a quick response to the new regime, and you will probably know after a couple of cycles, how well it is doing. You still have the SCT in your back pocket and there are a number of other standard regimes or even new trials left to try. Light regular exercise and meditation might help. I have started using some light weights and have found that helpful for upper body strength. I also walk a few miles a day with Google Fit on my phone and also eating the right way to get my BMI into line. As we patients know, having Myeloma is stressful enough, not to mention the fatigue of chemo.

    Stephen

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    1. Maybe. Though the trial wasn’t about the efficacy of ixazomib per se - as far as I understand that is already proven. I think the issue is that my myeloma is resistant to proteasome inhibitors. My response to velcade wasn’t much better.

      So really this is two things:
      1) a chemo regime that works for many, failed to work for me. Which is a horrid experience, but hardly unusual in myelomaworld.
      2) the distress caused by the last-minute nature of the doctors’ decision making. Which is a big flaw, I believe, in patient care, and about which I am quite angry and very upset.
      Put together the two amount to a shitty week! But again, hardly unusual in myelomaworld.

      And they mean that this phase in my treatment is going to be even longer than I anticipated. Which is not a big deal at all, in myelomaworld, where treatment is often unending. But it is a very big deal indeed to the extent that I still pretend(ed) to inhabit normalworld, where people don’t have to take chemo every day for the rest of their lives.

      So I don’t think it’s really much to do with the process of being a guinea pig, or the tried and tested nature of one drug vs the other. Just that proteasome inhibitors aren’t much use for me.

      I have a (long held) theory about proteasome inhibitors - though not one for which I can cite any conclusive evidence - which has always led me to expect that I might not be the best patient for them. They work by disrupting the cells’ waste disposal systems. One can imagine that is more of a problem for cells which produce more waste. My myeloma is very low-secreting so, I postulate, maybe less vulnerable. This begs the question of why I would choose a proteasome inhibitor regime. But... they are bullets and there’s only a finite number of bullets. And anyway, my personal theory is not empirically proven - I’d be a bit daft to not even try.

      I did a meditation course recently and I do think that’s helpful. And I’m learning the Alexander Technique which I am finding very useful. For fitness, I swim - though I’ve felt so shit on thalidomide that I haven’t done anything like as much exercise as I would have wanted to. And I am intending to join a local tai chi club. I agree with your sentiment on this - in order to be happy (and even maybe, a bit more healthy) we need to take care of our mind and body, as well as taking whatever poisons are prescribed. I do walk plenty, and I’m pleased to report no problem with BMI (even though bone damage keeps changing the denominator!)

      I hope all is well (as can be expected) with you.

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    2. I am OK, a bit behind you and it will be a while before I go on a trial. My biggest stressor at the moment is trying to get basic access to NHS hospital test results without going 20 rounds with Rocky Marciano. In terms of Myeloma technology this https://www.ncbi.nlm.nih.gov/pubmed/30343511 sparked my interest and is something I will track for the future.

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  2. We do know how it feels to be let down by the system, the sense that you are last to know they have cancelled on you (they have discussed it behind your back weeks ago) only finding out days before you expect to be in a bed.
    I hope this next bullet works well for you. Myelomaworld is really shitty at times.

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    1. Most of the time, if we're being brutally honest

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