← Back to Onward
Darren, who built Onward · 5 min read
Appointments
Questions to ask at a CML appointment
What to ask your haematology team, grouped by the appointment you are walking into.
Darren, who built Onward · 5 min readAppointments
What to ask your haematology team, grouped by the appointment you are walking into.
Darren, who built Onward · 5 min readEveryone has the same experience. You think of a dozen things between appointments, you sit down in the chair, and every one of them goes out of your head. You walk back to the car park and remember three of them.
This page is a starting point, grouped by the kind of appointment you are walking into, so you are not reading forty questions when only five apply to you today.
I am not a clinician. I have CML myself, and these are the things I wish I had known to ask. Take what fits and ignore the rest.
Last updated 22 September 2026
Take someone with you, especially early on. The first appointments after a diagnosis are an avalanche. You are being told what you have, what it means and what happens next, all while trying to take in the word leukaemia. You will not retain half of it, and that is not a failing, it is just what happens.
A second person hears what you miss. They ask the thing you did not think of, and afterwards you can compare notes on what was actually said rather than what you think you heard. I did this for every appointment in my first year and I would do it again.
Write questions down as they occur to you, not the night before. The things you genuinely want to know turn up at odd moments: in the supermarket, at three in the morning, halfway through a film. If you wait until the evening before your appointment to sit down and think, you will produce a tidy list that misses everything that was actually bothering you.
And one that costs nothing. If you do not follow something, say so. "Can you explain that again?" is a completely reasonable thing to say to a consultant, and they would far rather say it twice than have you leave confused. The same goes for asking them to write something down.
These are the first-appointment questions, the ones that build the picture. You will not get through all of them in one visit, and you do not need to.
Understanding your CML
Your treatment
Before you leave
Those last two matter more than they look. Knowing there is a number to ring, and roughly when ringing it is the right thing to do, takes a surprising amount of weight off the weeks in between.
Once treatment settles into a rhythm, appointments become shorter and more about the numbers. These are the ones worth having ready.
Monitoring and results
If a result has moved in a direction you did not expect, ask what it means before you decide what it means. A single BCR-ABL figure can shift for reasons that have nothing to do with your treatment, which is why teams read the pattern rather than the point.
This is the appointment people most often talk themselves out of. Side effects get quietly tolerated because they feel like the price of the thing that is keeping you well. Often they are not, and there is more than one tablet.
Side effects and daily life
Be specific if you can. "I have been tired" is harder to act on than "I have been too tired to manage the stairs twice this fortnight, and it started around the time my dose changed". Dates and patterns give your team something to work with.
These come up later, once the immediate shock has passed and you start wondering what life looks like from here.
Living with CML
The question about stopping treatment is worth asking early even if the answer is "not yet". Treatment-free remission is not right for everyone and depends on a long, deep response, but knowing it exists and what it would take changes how the next few years feel.
Your team has your results. What they do not have is the part only you can tell them: how the last few months have actually been.
Nobody remembers that accurately on the day. Asked how you have been, most of us say "fine", because the headaches in July have long since blurred into everything else. Written down at the time, it becomes something concrete to raise.
This is the bit I now get most out of. On the morning of an appointment I open Onward and generate an appointment prep sheet. It gathers everything since my last visit into one page: my latest BCR-ABL and which way it moved, every blood marker with its range and whether it has gone up or down, how many days of medication I logged, which symptoms I recorded and on which dates, and my questions with space to write the answers.
I take it in with me. It means I am not trying to remember any of it, and when I am asked how things have been I can actually answer.
If you would rather use paper, that works just as well. The point is writing things down as they happen, not the tool you use to do it.
Onward holds a running list of questions you can add to whenever something occurs to you, and ties each one to the visit where you asked it. Free, and your data never leaves your device.
General information to help you prepare for an appointment, not medical advice. Your care team knows your situation best. For medically reviewed information about CML, see Leukaemia Care or Blood Cancer UK.