Beginning a new journey?

I’m writing this early in November but won’t be posting it for a few days. The reason being I still haven’t had a chance to talk to Nick as he’s in San Francisco with work and I don’t want to burden him with anything. But I wanted to get my initial feelings down while they’re fresh.

On Thursday, I had my routine hospital appointment. Every month I have to go as I’ve been on a trial where I’ve been given a drug called Revlimid as a maintenance therapy. I’ve now been taking it for 7 years and I honestly believe it has helped to keep me in remission.

I knew when I walked in the door that something wasn’t quite right. My consultant wasn’t quite as smiley and I could see a graph on his desk rather than my usual prescription script. It’s not necessarily a major concern but now that my paraprotein (which is what they use to measure my myeloma) has gone over 10, the clinical trial has refused to keep giving me revlimid.

I’ve known the day would come but had sort of imagined that it was still a while away and that I’d see some more rises in my paraprotein first.

So, what does it mean? Well it seems that we’ll still be playing the waiting game for a while. If it only rises by 1 every couple of months nothing will change. However, my consultant has said that coming off the revlimid may result in my figures rising faster. If that happens, I’ll be back to treatment. Now that wouldn’t worry me normally apart from the fact he gave me the details for a new trial! Which suggests to me that he’s expecting me to need this treatment sooner rather than later! Although I hope I’m just reading into things.

I don’t really know how I feel. When he first told me I was very much thinking how lucky I’ve been to have this long in remission. How I shouldn’t be too upset as it’s all been so good. How I’ve benefitted in a way other myeloma patients can only dream about. But the last couple of days I’ve struggled a bit. Memories have come back of how much weight I put on from chemo … and even more, how wretched I felt after the chemo and the transplant. I’ve enjoyed so many years of being healthy, I don’t want to go back to that. I’m nervous of what it’ll mean for the family. For my netball and racketball. For my business. For everything.

IF all goes as well as last time it’ll be 2 years of treatment and recuperation. But I’m a bit scared to believe it will be that easy a second time. Myeloma doesn’t tend to be predictable and tends to come back differently each time.

But I know I’m getting ahead of myself. The next few months will be key to seeing how things progress. So keep your fingers crossed for us that the revlimid was more of a placebo than anything else, and that the next few months go ok.

While all this is going on we’re bang in the middle of renovating our house. In the week that this has all come up, not only has Nick been away but we’ve taken 2 walls down, pulled up 3 rooms of floorboards and pulled our downstairs apart! Still, it’s actually kept my mind off worrying so hopefully it’s been a good thing for it to be happening now.

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve been on maintenance since then until November 2018 but my figures went up so am now officially relapsed and have just started DVD treatment (July 2019)
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4 Responses to Beginning a new journey?

  1. Jacquelyn says:

    Thinking of you so much Debs and sending a big hug xx

    Sent from my iPhone



  2. alexbicknell says:

    Sending a big hug. It’s not easy, the relapse or the retreaent.

    But… mine took 3 years from starting to climb before I needed treating. Hope the same for you. And I’m 1 yr into the treatment phase and beginning to think I can see the end of the tunnel. Strength – you’ll get there.

    (I’m on revlimid right now; my immune system is shot; but it does seem to be working – after many cycles of ixazomib that worked for awhile, then failed…)


    • Deb Gascoyne says:

      Thanks Alex. I’ve been climbing v slowly since 2015. I’m hoping it keeps the same…back at hospital on Thursday so should know within a week what my figures are looking like. Hopefully they’ll have stayed stable!!
      At least the bowels are improving now I’m off revlimid! Might be able to get off the colsevelam too! Every cloud and all that 🙂
      So glad you can see the light now too. Fingers crossed you can leave treatment behind soon. Have you got an SCT on the way?


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