How do you know that you are in remission?

[StarryRoo]

Hi, I had a stem cell transplant in feb 2016 which has been successful although I did suffer from very severe gut gvhd and to some extent skin gvhd which left me hospitalised at Kings for 5 months. I’ve been out of hospital for just over a year now and have been receiving chemo as a preventative measure but as yet no one has told me that I am in remission until after my last visit to the consultant when the notes from that appointment were sent to me and I read that I was in remission! No one has actually told me this and whilst this may sound stupid I keep thinking is it really true? How do they know? I’ve not had a bone marrow biopsy for over a year. Can they just tell from blood results? Any thoughts on this appreciated.

[LCNurse2 Moderator LeukaemiaCARE Nurse]

Hi Starry Roo, thanks for your post, it sounds like you are doing well post transplant. Normally patients have a bone marrow biopsy at approximately 100 days post transplant and at one year post transplant to confirm remission and to confirm chimerism.

Complete chimerism means that there are 100% donor cells in your blood, indicating that you are in remission.

I would recommend asking for a copy of your bone marrow biopsy reports as these are the definitive tests to show you are in remission.

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Hi, thanks for posting. Glad to hear that you’re ok and I hope you’re coping well with gvhd. You had a lot going on after your transplant and it’s not rare for people like you to think not to be in remission. Remission can be defined by bone marrow biopsies, but also good blood counts over the months are indicative of a good transplant outcome. If you have more queries about remission, I would advice you to ask to your doctor at the next appointment.