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What information do I need to ask for from consultant?

Hi All, I posted the other day regarding my mums CML diagnosis. We were back at consultant yesterday and she has now started on Imatinib 400mg daily. 

We asked him to clarify about what phase and he said everything at this stage is pointing to chronic phase but there are still more tests from the marrow to come back. She also has an ultrasound next week too although he said spleen is not enlarged and if it is it’s marginal.

So anyway I have tried to read as much information as I can meantime to educate myself but feeling rather overwhelmed so my question is what information/details/data should I ask the consultant for next week so we can educate ourselves more around blood counts and all of the other markers?

Thank you

lisa

 

Hi Lisa,

The bone marrow tests are the ones you should focus your questions on. Here's what I'd ask:

What form of CML is it and was any mutation testing done? 
Likely answer is P210, which is by far the most usual. Other types are P190 or P230. It's just the exact genetic arrangement. Mutation testing is not always done at diagnosis, but it might have been.

Was a FISH test performed on the marrow, and if so what was the result?
A FISH test looks at a sample (sometimes 20, sometimes 100) of marrow cells and checks each one to see if it has CML. The result will be 18/20 or 95/100 or something like that. Don't worry if it's 20/20 or 100/100 ... that's common.

Will I need another bone marrow test in the future?
Many clinics don't even do marrow tests at diagnosis any more, but some places do still want them at certain points.

When will my first PCR test be run?
Maybe it already has been. Mine was done at diagnosis. Unlike FISH tests on bone marrow, PCR tests are run on over a hundred thousand samples. They're very good at seeing tiny amounts of disease as your mum starts to respond to therapy.

How will I know imatinib is working? What are the treatment goals?
An "optimal" response would see a PCR score of 10% at 3 months. If your mum doesn't respond as quick as that, some doctors are quicker to switch to a different drug than others. Sometimes the tortoise wins the race, but sometimes switching is better.

You might also want to ask about the rest of your mum's blood counts, and how close they are to normal and if there are any to be concerned about at the moment (e.g. low platelets).

David

Thats great David thank you.

We did ask about further bone marrow tests and he said not normally.

We also know that her platelets and red blood cells were normal (suppose the meds could alter that?)

I’ll be armed with the other questions on Tuesday.

thanks again

Lisa