Facing a New Future

Another post where I start writing it before I have all of the facts. I actually felt physically sick from my appointment yesterday. More worried than I’ve probably felt since I was first diagnosed back in 2009. I want to be honest but I’m actually quite scared about what honest might look like.

Yesterday, my consultant told me 2 things that weren’t great. He told me the lesser of the two things first: My stem cells – not enough were harvested back in 2011. Not a huge deal. It means I have to go through a stem cell harvest again (which I hadn’t wanted due to being really ill first time), but the process is easier at the QE with them not making you have chemo – just the G-CSF injections (these stimulate your body into making more stem cells).

So whilst this wasn’t the news I’d wanted after months of waiting to hear, it also didn’t feel like the end of the world. I could still harvest in March / April and have my transplant in April/May. This was scenario one.

However the second thing was: My Paraprotein levels look like they’ve plateaued. Now this could be ok if they decide they have only plateaued and aren’t rising. But his fear is that actually, they’d like them to be lower than what they are (9.4), and that if this is the case, they would like me to have some extra chemotherapy to really blast them before a transplant. This wouldn’t just be chemotherapy like I’ve been on for the last six months where a lot of life has been able to continue. This would be me on a cocktail of high dose drugs (called DT-Pace) that I would be given 24/7 for 4 days, and where it could take up to 28 days to recover (in hospital). This would probably be repeated at least twice in the hope that my paraprotein would decrease. Then I’d still have to go back for the Stem Cell Transplant after this where I would definitely be in hospital for 3 weeks. This DT-Pace would result in an earlier hair loss and being pretty poorly. And would really disrupt everything for the kids, and for Nick for an extra 4 months or so.

But what I’m really scared about is that it would mean that I’d be on my third line of treatment. With myeloma, every time you go down a different treatment route, you are getting closer to running out of options. First and second aren’t the end of the world. Third probably isn’t either. But if my myeloma has mutated that much, it might not respond to third line treatment either. And is less likely to give me as deep a response.

I have spent the last 8 years becoming a ‘glass half full’ person. I’ve tried so hard not to let myeloma dictate who I am, what I do, or allow it to negatively consume me. I think I’ve succeeded. But this is all very scary and I am back to that feeling of helplessness and a fear of what might happen in the future. I am so scared I won’t see the kids leave school, or graduate. Will we get to finish the house that Nick and I have been lovingly trying to renovate? Will I reach my 50th – something I took for granted even when I knew I was relapsing. I never thought I might not actually reach it.

I know this might be a tough post to read. Believe me, if it’s tough for you, it’s even tougher for me to live it. And for Nick.

So bear with us at the moment. We’re trying to work out our priorities. We’re trying to make the right decisions – for the four of us first and foremost. But then for everyone around us. And we don’t want to give up – there’s a long way to go.

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 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 Facing a New Future

  1. alexbicknell says:

    Oh Deb. I’m there too. They never actually gave me DT-PACE, but they threatened it. I had another stem cell harvest I’d hoped to avoid, and I’ve gone through 4th line treatment. I was in clinic this very morning discussing my own plateau. And, yes, all the stuff in your head that goes with it. We’ve just booked our summer holiday for Easter, because its sooner.

    Not much consolation for either of us, but it’s a bit easier if you’re not alone, right? I’m with you.

    This morning I felt quite chipper. (We all have up days and down days in our heads? Well, I do anyway.) My light chains aren’t actually up, and my most recent MRI shows no new damage (though some of the old breaks are still crumbling). A friend who has had a tough myeloma journey, is currently in complete response on pomalidomide – which will be my 5th line.

    And I’m about to go on holiday twice in 2 months.

    Big hugs as always. It’s shit, but we’re better than that.

    Like

  2. meeshymeesh says:

    Hi Debs, I know things might seem pretty grim at the moment but there are always options. For what it’s worth I totally understand where you are coming from, I too had VDT- PACE. It was not as bad as I thought it would be. Yes I lost my hair but side effects were minimally and was in hospital for 2 weeks with family and friends coming to keep me company. If it wasn’t for them it would have been a very boring staying!!

    I too have relapsed after 8 years and started back in Revlimid maintenance about 1 and half years ago. I was on 10mg and then after a year went up to 15mg. My m spike or paraprotein has been going up very slowly but steadily. ALL of labs are within normal range so technically I told my specialist that I am shouldering all over again as no other CRAB (Calcium, Renal, Anemia, Bone) symptoms. As I am feeling fine and training for a triathlon I have decided the best course would be to continue with Revlimid but up the dose to the max of 25mg. I really want to exhaust Revlimid before trying anything else! At least this way I get extra time and mileage out of the Revlimid before going on to the next drug.

    I am in the USA but as you know from previous emails I am English, if you would like to have a chat via WhatsApp or FaceTime then let me know.

    Good luck and keep me posted. michellefortescue@yahoo.com

    Kind regards Michelle Gillet

    >

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  3. tiredkiwi says:

    Man Deb. That sounds rubbish. I was trying to comment on your previous post but then discovered I couldn’t find my password. Alas. So I came back to comment and saw things have moved along a bit.
    So in response to last time, it’s just so frustrating to feel like you can only move at a fraction of the speed of the people around you.
    And to this time, the above is even worse if it doesn’t feel like it’s achieved much. I certainly haven’t had DT-PACE but know someone who did and it wasn’t as bad as it might have been, so fingers crossed that’s the case for you if it is needed. And he got a good response too.
    The head game is the hardest bit, and that’s it’s so unfair – you turn up, take your chemo perfectly, stagger through the feeling grotty….and then the myeloma says yeah,nah. Best wishes. Julie

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    • Deb Gascoyne says:

      Thanks for taking the time not just to reply, but to come back to do it! Yeah it’s all a bit frustrating at the moment but sure we’ll get through it – haven’t really got a choice 😂
      Like you say; the headgame is often the hardest to play!

      Liked by 1 person

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