An uncertain start

Happy New Year everyone

So it’s definitely been an uncertain start to this year and I’m not just talking about Covid. Just before Christmas, I was told that my paraprotein levels (the ones that measure how bad my myeloma is), had unfortunately risen from 4.2 to 8.1. A bit of a shock to the system as, despite my numbers often fluctuating, we had expected them to go down a bit further before stabilising. We certainly hadn’t expected them to go up to nearly what they were when I had my transplant. Effectively, it meant that we had to face into the fact that my transplant may not have worked.

Gutted doesn’t begin to explain how I felt. Having had 8 years of remission the first time round, I had at least expected to have a couple of years without having to worry. This news threw that all up into the air. Suddenly I was having to contemplate the idea of more chemo, more treatments and more side effects. It was bloody scary! And happening before Christmas, Nick and I decided we didn’t want to worry anyone with the news, especially the kids, and so we kept it pretty much to ourselves.

Before I say any more, I should say that since then, my numbers seem to have stabilised at just over 8. So we are now hoping that they will stay there and that will be my norm. No one really knows what will happen but at least they haven’t gone up in the last month. There is still a chance that they will tell me that the transplant hasn’t worked but I still hope that treatment is some way off.

I have to say it was super worrying when I got told. Suddenly all the fears that I had when I was first diagnosed came back. Would I see the kids get to major milestones, would I complete my #50KB450 (perhaps more importantly, reach my 50th birthday), would Nick and I ever get to do our trip to Rome, could Nick go for more responsibility at work if I was on treatment (I felt yes, he was obviously worried). The only bonus was that because we didn’t share the news, it did really help me to pull myself out of my dip very quickly…and thankfully I’ve stayed there so far.

So we’re back to a bit of a waiting game – the story of our lives now! If my numbers stay the same, we can all celebrate for as long as it lasts. If they start to go up again, it would mean stopping my current maintenance therapy (daratumumab) and going into a new treatment. I won’t even bother listing those here and now as I hope they won’t be relevant by the time I need to think about next steps. My consultant, who we spoke to today, is positive and if he is, we are!

So, like most normal people do when they’re faced with adversity, what did I do? Did I sulk in my room? Did I decide to focus on my diet? Nope, I decided to pop the pressure on and sign up for the Myeloma UK London to Paris bike ride 2021!!! At a time when I’m still recuperating from my transplant and still held back by the dara 🥴😂 I thought that signing up for a 308mile bike ride over 4 days was a good idea! And to be honest, as much as I joke about it, I do think it’ll be so good for me in terms of keeping a positive focus, keeping fit and losing some weight. All of which I need to do. And even if treatment does start up differently, it will be important that I can look after those other areas.

So if anyone out there can provide me with a decent electric road bike, any equipment or a new body, please get in touch! Or you can donate here

And for the time being, we just want to wish everyone out there not just a happy 2021 but hopefully also a healthy one. Keep safe and hope to see some of you this year.

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 out....it 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 was on maintenance until November 2018 but my figures went up so officially relapsed. I have been on dara since 2019 and had my second transplant in September 2020. Still on dara and keeping fingers crossed.
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3 Responses to An uncertain start

  1. Elizabeth Cornelius says:

    Deb Thanks for the update, So sorry to hear about you paraprotein numbers. Of course this could be be just a blip and they still could go down, I really hope so. You have been such an inspration to me as I was diagnosed a few months after you and I read your sct blog as yours seemed the most honest. Like you I have had an unbelievable 8 years clear, which I never thought possible at diagnosis, but unfortunately we discovered it had come back in August without realising, despite regular bolod tests my mm has mutated to oligarsecretory and so the pps are not showing as much and I now have it in many areas and am 3/4 of the way through dvd. Very tough side effects, Praying the treatment will work and I go on the dara maitenance. As I have decided not to go for another sct. My pps were only 5 in August but had to have radiotherapy on my hip and now got it in sternum, thigh bones and more vertebrae fractures, Such a different disease for everyone . My pps were 5 in August and now 2 as I start cycle 7. Hate this regime so much worse for me then CDT. Iv’e gained nearly 2 stone which I am blaming on the steroids, dont think my face can get any fatter.
    Really hope you get the remission you deserve and have a really positive and healthy 2021 Just donated for you . Wishing you well with your bike ride ,that is such a positive challenge to take up and very brave.
    Good luck
    Liz Cornelius

    Liked by 1 person

    • Deb Gascoyne says:

      Hi Liz. Thank you for your email. I’m so sorry that you’ve had such a tough time with the side effects of dara – shows I was lucky really. Although I found once I went onto maintenance and stopped the velcade my side effects reduced massively. Certainly my eye issues have calmed right down.
      I can’t blame you re the SCT although I went through mine hoping for a few years given how well the first lasted. I’m hoping the second might be better than we’re currently worrying about!! Long may my numbers hover at 8!!
      How is the disease impacting you in your bones? Do you feel the pain?
      Thank you for your donation it’s really kind of you! Now I just need to find a bike!!
      Xx

      Like

  2. Margaret Jackson says:

    Dearest Deb

    Sorry to hear the news but hope the numbers go down soon! A friend of mine here in Grayshott has been diagnosed with myeloma (she is 75) so it was good to be able to share with her.

    I tried to use the JustGiving site but it wouldn’t take, so if you let me have your bank details I will send a donation through.

    In the meantime, lots of love as always

    Margaret xxx

    Like

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