The ‘C’ word

I’ve put off writing this post for a few weeks because I’ve been getting my own head around the ramifications, before sharing it with the world and having to deal with people’s reactions, as much as anything else.

At my clinic visit on 10 January, Dr Jenny said I don’t need to come back for four weeks. Good news!

As it happened, yet again, the four-week gap had to be postponed, as I was going to be away on 7 Feb, so I had to make it three weeks (31 Jan), but the principle remains: I no longer need such close monitoring.

That wasn’t the only thing she said…

At the end of the consultation, I asked about the allo transplant…

An allogeneic transplant is a much more risky procedure than the auto – the mortality rate for an auto transplant is around 1-2%, whereas for a mini-allo, it can be 10-15%. Not only mortality, but the risk is higher for complications, infections and problematic Graft versus Host Disease [GvHD]. These are the main reasons why they don’t offer an allo transplant to everyone and why it’s not the first transplant offered to myeloma patients, even to young, healthy myeloma patients.

So, to reiterate, getting to nine months post-transplant, in remission, with only mild oral GvHD, fatigue, one cold and one two-night stay in hospital for a virus-induced high temperature is brilliant.

I’ve taken it a bit for granted, but every now and again, I pull myself up, take stock and realise how lucky I am that it’s all gone as smoothly as it has. As I’ve mentioned before, I know of other transplantees who have had more serious issues, needed further treatment or a ‘top-up’, some who are still going through treatment, pain and anxiety months on from their transplant and of course, there are those who have died.

My question to Dr Jenny was whether the allo transplant has a higher chance of a longer remission than the auto. In fact, I have already achieved almost a two-times longer remission, given that the initial transplant failed after only five months and here I am coming on for ten months.

Jenny’s response quite threw me… She mentioned the ‘C’ word… No, not THAT ‘C’ word! We already know about THAT ‘C’ word. She said the word: ‘CURE’. Astonished, I was!

What she said went a bit like this… Up to two years, patients are at the highest risk of relapsing, serious GvHD problems or other complications, including the possibility of dying – thus the close monitoring. But, in the majority of myeloma cases – bearing in mind that they don’t have thousands of cases to base this on, as an allogeneic transplant for myeloma is still fairly new science – if you’re in remission at two years, you’ll probably be ok up to five years.

With leukaemia, patients are considered cured if they are in remission at two years. With myeloma, while they broach the ‘C’ word… and it may be possible… there can be late relapses, as late as 10-12-15 years, so they can’t say that you’re cured if you’re in remission at two years, or even at eight years. Until there are no late relapses, myeloma is deemed incurable. Only if someone dies of old age or a non-myeloma-related illness would they say absolutely that the myeloma had been cured.

The point that she was making, which I had to take time to take in, was that if you’re in remission at two years, you’ll probably be ok up to five years. Almost a cure then…? It sounds quite tentative… wishful thinking perhaps?

As with everything else in myelomaville, there are no guarantees, relapses can happen at any time and just because the majority have one experience, there’s no way to know whether any of us are part of that majority or not. Everyone’s journey is different. So, while I see this as good news and it provides a bit of optimism, it actually doesn’t allay any fears of relapsing. And it doesn’t make me celebrate, so if you read this and want to encourage me to jump for joy, please don’t, as I’m not. I’ll just wait and see and carry on living.

I think it may also be because it was in February that I received my diagnosis two years ago. And last year I began my second stage of treatment, following the relapse, around this time. Perhaps once every ‘first’ anniversary has been successfully passed, I may be able to relax more and believe in a long remission…?

I’m approaching my first four-weekly appointment next Thursday, so going to clinic is more of an anomaly than a regular part of my weekly routine. I already have the beginning of a slight nervousness that other people have mentioned when they go for blood tests and clinic appointments… maybe this will be the time they give me bad news…? This is a new feeling, one I’ve not had before. I wonder if this will be my new normal?

The possible ‘cure’ being dangled like a carrot before me feels quite strange too… It’s a bit like a mirage, I can’t quite get hold of it, but it twinkles and teases me and I can’t be sure that it’s really there. Will I be in remission in May next year? Will I go on to see five years or more? Will I be one of those who lives on for many years, even to die of something non-myeloma-related? And do I want that? I’d kinda got used to the idea that I knew what I’d die from. Has that all been thrown to the wind? Can I consider the ‘C’ word as a real possibility?

I’ve noticed how many question marks appear in this post. It would seem that Dr Jenny’s use of the ‘C’ word has done more to raise questions and uncertainty than to alleviate any qualms. Hmmm… 😐

I’d like to dedicate this post to a clinic buddy, Sam, who is today celebrating her one year anniversary of her second transplant for leukaemia. She’s had quite a tough time, but is now doing well, has returned to work part-time and feels like she can finally believe in the future. Halfway to being cured, eh?
Happy anniversary, Sam! x
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24 Responses to The ‘C’ word

  1. Mavis nevill says:

    Hi Jet. Right! No exhortation to rejoice, but do travel hopefully!
    Lots of love Mavis xxx


  2. I understand the no cure part but it must be difficult and strange living from month to month. Hope it continues to go well. XXX


    • Jet Black says:

      Thanks Meg. For now, I don’t feel that I’m living from month to month but it may be that that feeling may come in the future. I’ll just have to wait and see. The emotional and psychological aspect of this incurable malarkey is more demanding than the physical stuff, but more fascinating too.


  3. Enrico Crocetti says:

    You are in my prayers , my hero and inspiration .

    Sent from my iPhone


  4. Simon Hancox says:

    Interesting news indeed Jet! Many thanks for sharing my friend x


  5. Morag says:

    Long may your remission continue! x


  6. Joy, jubilation and then, after that the pendulum swings to the other side, for a time, until the swing back… part of life, I’d say. But how lovely for you that the dark cloud of MM has lifted and of course intending for you many years of remission, stability and joyful days, because really I think that is what we are here to find.


  7. MakingSpace says:

    Why. do. your. posts. always. make. me. cry. (That’s another “C” word, ya know)

    I really have no idea what to say, so I’ll just say, may your memoirs have as many chapters as you want.


  8. Deborah says:

    Thank you for your post it certainly gives some hope in this lottery we seem to find ourselves in
    It does seem like we have to live with the anxiety of what will we be told at the next appointment but at least in between times we can get on with living.
    Fingers crossed for you next Thursday
    Deborah xxx


    • Jet Black says:

      To be honest, I’m not sure I mind that slightly ‘on edge’ feeling, Deb. Perhaps I’ve adjusted to it being part of my new normal, or maybe I find it helpful for focusing on what’s important and what I want to do with my time/energy, knowing better than most that it could so easily be whisked away. That’s true for everyone, but we’re lucky enough to be viscerally in touch with it. 😇


  9. You had better be in remission next May, as I think we have a dinner date then!
    On a more technical note, a full allogeneic transplant in a myeloma patient (high dose chemo followed by donor stem cells) carries a 20 to 30% risk of mortality within 12 months whereas a RIC allo or “mini allo” (reduced intensity conditioning) which you have had carries about a 10 to 15% risk of mortality, neither of them to be sniffed at, looking forward to your first anniversary post mini allo

    lots of love
    Wend xx


    • Jet Black says:

      Thanks for that info, Wendy. I was searching online for ages to try and find mortality rates. Not easy to find. I’ll amend my post. And yay! for dinner celebrations. 😊👏


  10. Claire Nance says:

    Another great blog Jet, and insight in to your journey- thanks x


  11. Hope is a powerful thing, and it sounds like you’ve got plenty of it to hold onto.


    • Jet Black says:

      Thanks Vic. I’m not sure that I am holding on to it… more like observing it as a possibility, without getting too attached. A mirage can disappear if you get too close… I’ll just wait and see. I’m sure my feelings will change over time.


  12. Deb says:

    Interesting stuff Jet. I am pleased for you – and I don’t want to say ‘tentatively pleased’! x


    • Jet Black says:

      Thanks Debbie, for reading and for your friendship and support since the beginning. The medical stuff is interesting, but the psychological journey is quite amazing. 😜 x


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