I was diagnosed with CML, without any symptoms, a few weeks ago. After having bloods for a gynaecological and hair problem, other abnormalities, ie WBC, emerged.
After two weeks of Imatinib my bloods have reduced from 50 to 10. What does this mean? My nurse says ‘everyone responds differently’. I am seeing my haematologist in two days. Any thoughts?
I know I won’t be coming off the little miracle pills any time soon.
A warm welcome to this online community @PoppyDarling, really hope you’re doing ok since your diagnosis. Just in case useful for you, here is our CML booklet and our newly diagnosed booklet.
Regarding your blood counts, our @BloodCancerUK_Nurses might be able to shed some light so I’ve tagged them in. We’d really encourage you to bring up your questions with your haematologist this week as it’s important you get the right info for your individual circumstances.
How have you been getting on these past few weeks?
Hi @PoppyDarling a great big welcome to our forum.
Have you any support from family and friends?
I expect you are still in shock I know I was for many weeks.
I was also diagnosed after routine bloods after a gynae op.
@Alice_BloodCancerUK has given you brilliant advice which I will not repeat.
The main thing that you might do is to look after yourself and be kind to yourself.
Please let us know how you get on with the haematologist.
I am sorry to hear of your recent diagnosis. I would imagine this understandably came as a shock & i do hope you are doing okay?
It sounds like your team have been supportive and you have been started on treatment quite quickly. How are you finding the treatment generally?
If i have understood correctly it is your White Blood Count that has reduced from 50 to 10?
If so- it It is likely your WBC was raised to an abnormal level prior to diagnosis, which can be a typical indication that something is underlying, and since starting treatment your white blood count has now reduced to a more normal range, as would be expected.
Essentially this is reassuring and expected from Imatinib.
Moving forwards, as part of your ongoing care your team will continuously monitor your bloods, to ensure that both you and your symptoms are where possible better controlled and stabilised.
It is important however to direct these questions to your haematology consultant or clinical nurse specialist team as they can best advise on the basis of your own individual circumstances and reflect your current stage of treatment etc.
Please do also know that you are also very welcome to contact our support team should you need to talk anything through regrading your recent diagnosis, as we appreciate this may still very much be a rollercoaster of emotions- 0808 2080 888.
Also in case it is useful to you we do have some information on our webpages which explains more about blood tests- Blood cancer tests | Blood Cancer UK
Do Take Care, Lauran
Thank you for this. I have got a list for my consultant, including this!
Just seeking more information.
Hi @PoppyDarling . I was diagnosed with CML back in 2003 and initially put on immatinib. It is a very good drug with few side effects once you settle in. You will have blood tests for many things at each appointment but the main one for CML level is the BCR-ABL. This may be the one you are talking about. It does take time to drop but most people get a very good result. Mine came to a plateau and i was moved to nilotinib to get it to drop further. There are now a few others that can be tried too if immatinib does not fit.
I always write down a list of question even now when i go for appointments. No question is too small or silly so do ask anything that comes into your head.
Thank you for your response; every reply adds a little more to my armoury.
Good afternoon. My name is Yuriy, I’m from Ukraine.
I was diagnosed with CML in 2016, I started taking imatinib, unfortunately in 2020 there was no reaction to this drug, blast cells were detected. I started taking Nilotinib, my condition has improved, there is a big response.
Due to the war in Ukraine, he is forced to move to the UK. Please tell us how the treatment, diagnosis and monitoring of the disease takes place.
How much does the treatment cost, is the drug given free of charge or does it need to be bought? And also advise a clinic near Liverpool.
Thank you and stay healthy
Dear @Yurii, welcome to the Forum and to the UK.
I am so very sorry that you have hadto leave the Ukraine, this must be such a worrying time for you. Have you moved here with family? Are you staying with a family in Liverpool?
Here is our information booklet on CML which includes information about the standard treatments used to manage/treat this condition, here in the UK, and includes information about Nilotinib CML booklet.
The following links might be useful for you -
In case it’s helpful for you, this NHS webpage allows you to search for consultants, departments and hospitals in the UK. For instance, if you type in haematology and a location, it will bring up all the hospitals with haematology departments. Many of the larger hospitals have webpages containing advice for international patients who are looking to access private treatment and care, on how to start the referral and consultation process - Hospital Department Search - NHS
There’s also some information on this webpage around choosing a hospital and GP - About NHS hospital services - NHS
Please don’t hesitate to get in touch with us with a bit more information so we can try to help you as best we can.
Hi @Yurii a great big welcome, you must have such a mixture of emotions suddenly having to move your home and medical treatment to this country.
I hope you feel settled soon.
You ask a lot of questions that you really need to ask of your medical person in Liverpool.
I have just seen @GemmaBloodCancerUK has replied to you far better than I could have.
Take lots of care of yourself.
Welcome @Yurii and i can only imagine the stress and worry of entering a new country and needing medication without knowing the system. Hopefully you will have a contact that will advise on obtaining a GP and then you can be referred to a hospital. Nilotinib is a hospital prescribed drug and it is usually got every 3 months from a hospital after a blood test. As it is an expensive medication some hospitals will only give out 1 month at a time and will hold the rest for you. My hospital hold littles in stock so they have to order it as it is prescribed so it may take up to a week for them to get it but they do usually hold a small amount that they can give in a emergency.
I would assume there is a hospital in Liverpool that specialises in CML who will help as much as they can.
Wishing you all the best and hope you can obtain the medication when needed.
Please tell, do patients claim a disability in the UK with this disease?
@Yurii Not that i am aware off no.
Hi @Yurii the Blood Cancer UK support line might be able to enlighten you or point you in the right direction.
Hello @Yurii, I have replied to you in messages. Hope that you are keeping well? Take care Gemma
Out of interest is there a benefit such as disability benefits in Ukraine?
so. In Ukraine, all patients with CML are given a disability group