• May 14, 2016 /  Myeloma

    Sorry it’s been a while, though nothing much of significance has happened. After my DLI I became 100% donor cells. My disease levels (kappa in the 20s) are just above normal, and have been stable for some time and for those who understand, my kappa/lambda ratio is about normal too – which it hasn’t been for years. I am still on Revlimid, but they will try reducing the dose from 25mg to 15mg after this cycle. My Leicester consultant doesn’t want me to have another DLI as it’s not necessary atm and she’s worried about graft versus host disease which can be nasty. She’d also like me to be fit in case they want to try me on any new treatment in the future.

    The downside has been side effects of coming off steroids, which, along with the Revlimid, have knocked me sideways. There has been some disagreement over whether I should be treated with hydrocortisone, but after another test, but the endochronologist at N’ton said I’d only need extra if I was under stress – ie have an infection. Whether this is ok I don’t know, but I am still very tired and my joints ache badly. I guess my cortisol levels will slowly rise back to near normal – let’s just hope it doesn’t take too long.

    So – on balance the important thing – my disease levels – are most important, and as everyone on treatment knows, I just have to put up with the effects of treatment to keep them there. I’m trying to get exercise as much as possible, but to rest when I need to.

    Posted by admin @ 8:47 pm

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3 Comments to Staying Stable

  • Sarah, these results of staying stable are fantastic to hear. Your blog gives so much to others, either on this journey themselves, following because someone they know is or Doctors supporting their patients.
    Either way it’s a remarkable blog that helps others. Love Denyse. X

  • I agree with Denyse – this is a truly remarkable blog Sarah. What an achievement.
    Your news is very good to hear but, after all those years of painful treatment you deserve to be pain-free now.
    So here’s hoping that your withdrawal from steroids becomes much easier for you and that you can sit peacefully and painlessly in your beautiful garden, enjoying an amazing British summer!
    Jane x

  • Thank you both of you for your support and kind comments. I’ve been fairly lucky with pain as others have it far worse, and over the years, while I’ve had some pain from specific procedures, I haven’t had it chronically. It is a nuisance to have painful joints atm, but I’m trying to exercise gently, and the pain comes and goes. The reduction in my chemo might help and as my cortisol levels slowly rise, that might help too. I had a very busy day yesterday at the hospital and also walking from there to town and later to a cafe and I managed it pretty well. Tired today, but I’m having a day off!!

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