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When you first start your treatment, you’ll need to go to the clinic every week or so. This is so that your doctors can keep a close eye on how you are responding and check for any side effects.
As time goes on you won’t need to go to the clinic as often and eventually you may only need a check-up every couple of months.
At these appointments your doctor will ask about your general health and if you’ve had any new symptoms or side effects from treatment. You’ll usually have blood taken to check the numbers of blood cells (a full blood count or FBC) and for a PCR blood test. From time to time you may also have a bone marrow sample taken. Your doctor can tell you how often this might be needed.
The results of these tests help your doctors judge how well your leukaemia is responding to treatment so they can make any changes if needed.
The aim of your treatment is to put the CML into remission. Remission means there aren’t any signs of CML in your blood. To measure how effective the treatment has been, doctors look for different levels of response:
The white blood cell count in the blood is usually high when people first develop CML, and the first level of response is seen in the blood counts. If there’s a haematological response, it means the full blood count has returned to normal and no leukaemia cells can be seen. If your spleen was larger than normal when you were first diagnosed, this should also have gone back to its normal size.
Most people get a haematological response within three months of starting imatinib|.
This is the next level of response. It refers to the amount of Philadelphia chromosome| in your blood and bone marrow.
When your treatment begins to work, the number of Philadelphia chromosome positive (Ph+) cells in your bone marrow decreases. Usually, at least 20 cells from your bone marrow sample are examined by your doctor to see if there’s been a cytogenetic response.
There are different levels of cytogenetic response depending on the percentage of Ph+ cells in the bone marrow:
It takes longer (sometimes many months) to get a cytogenetic response than a haematological response. About 80% (8 out of 10) people taking imatinib for CML in the chronic phase| get a complete cytogenetic response.
A molecular response is the next aim of treatment after someone gets a cytogenetic response.
Even after someone has a cytogenetic response, there can still be leukaemia cells in their blood. But because there may only be one leukaemia cell among many thousands of normal blood cells, a very sensitive test is needed to detect the leukaemia.
The polymerase chain reaction (PCR) blood test is able to detect one leukaemia cell in up to one million (1,000,000) normal blood cells. It does this by measuring a substance (transcript) made by the BCR-ABL gene in the leukaemia cells.
When you’re first diagnosed, and about every three months afterwards, you’ll have blood taken for PCR testing.
Because it’s so sensitive, the PCR test may continue to show up signs of leukaemia for many months after your treatment starts, even though you’re feeling well.
There are two different levels of molecular response:
You’ll usually keep taking the TK inhibitor for as long as it’s working to control the leukaemia. This is important even if your PCR blood tests don’t show any signs of leukaemia.
There’s a risk that if you stop treatment or change your dose without your doctor’s advice, leukaemia cells may develop again and not respond as well to treatment in the future.
It can be difficult to remember to take your tablets every day. You may find it helps to make taking them part of your daily routine so it becomes a habit. Here are some ideas:
Your prescriptions will be organised through the hospital, so you may have to go there to collect the tablets each time you need more. Tell your doctor, nurse or pharmacist if it’s difficult for you to get to the hospital
For answers, support or just a chat, call the Macmillan Support Line free (Monday to Friday, 9am-8pm)
If you have any questions about cancer, need support or just want someone to talk to, ask Macmillan.