I was diagnosed with Chronic myeloid leukaemia in June, I started on Imatinib 2 weeks later. After the first 4 weeks my white blood cell was back within the normal range (6.3). I had another blood test yesterday and my bloods have come back at 1.3, however my consultant has told me to continue with my dosage, is this what normally happens? He also said my recent bloods taken yesterday and currently being analysed for a ‘pattern’ to determine the next course of treatment - what does this mean? I did ask but my brain goes to mush when I speak to the hospital and I forget everything they tell me.
Sorry for rambling on and I hope everyone is doing ok x
Oh @CarlaWild I know what you mean about your mind going to mush, I have found that I either need to take notes or have someone with me to take notes.
I don’t know what I think about this but some people, with the permission of all parties, record the consultation.
I am on active monitoring (or watch and wait) and that means that my blood tests are checked at certain intervals to see the patterns of the results.
I used to chart my results on graph paper and I could really see them going up and down.
Now medical people treat patients as individuals and can tweak medications accordingly.
Really look after yourself and please do keep posting.
I think we all understand our brain going to mush when we are in appointments, I always take somebody with me so if you can, try and do the same or get somebody to listen to the call with you.
Everybody’s journey is so different so your medical team are best to answer your questions.
If you want to talk things through though, give the helpline a call. They are the experts and may be able to help with your questions before the next appointment.
Dear @CarlaWild,
I am sorry to read your blood results are yoyo-ing and causing you worry!
We are unable to comment on individual blood results but perhaps your doctor wants to see how things go, to see if they come back up, stabilise around that level or continue to drop before making any firm decisions. Can I ask when your next scheduled blood test is? You can always contact your clinical nurse specialist (CNS ) and ask them to reiterate the plan just to make this clearer for you.
I would encourage you to be mindful about how you are feeling, if you become unwell or develop fevers please seek advise from your 24hour support line as IF the white cells continue to drop you would be more susceptible to virus’/infections etc. I am sure your team have gone through this with you already.
I also agree with @Nichola75, it can be really helpful to take someone along to your appointment, although I am aware that this isn’t always possible.
If you want to talk through things with us, our support line is open and happy to help - 0808 208 0888.
Best Wishes,
Heidi J (Support Services Nurse)
Thanks for the response, he’s booked me in for the 4th of December to do my bloods again and discuss the results. He said at this point the ones he’s (sent away for analysis) will be back too. I’m still not sure what they are looking for when they analyse them? He did mention something about looking for a pattern so they could make a prediction but tbh it was all garbled in my head.
I feel like December is a very long way away if my bloods are continuing to fall so much. Also, i work full time as a police officer so I don’t really know what to do about work if im more susceptible to illness at present?
Hi @CarlaWild I know the 4 December seems a long way off to you, but it is certainly not unusual especially when your medical person is looking for a pattern in your results and you have other tests that take longer to analyse.
Have you had any illnesses that you feel your profession has made you more susceptible to?
We have many people on our forum that are in contact with children or the public which I hope will respond to you.
Do you want your employers to know at this point?
The main thing is that you look after yourself and please do keep posting
Hello @CarlaWild
It is understandable that you feel like concerned about your treatment and monitoring. I would encourage you to talk to your Clinical Nurse Specialist around these concerns.
We are updating our Chronic myeloid leukaemia information at the moment but we do have our current information here Chronic myeloid leukaemia (CML) treatment and side effects | Blood Cancer UK. The monitoring for Chronic myeloid leukaemia does include the measurement of the BCR-ABL1 gene in your blood. This is a measure of how much
leukaemia is in your body. It is called molecular monitoring and it is done using a
very sensitive test called PCR (Polymerase Chain Reaction). These results are called your molecular response. Our colleagues at Leukaemia Care have produced this download: CML-Molecular-Response-Factsheet.pdf (leukaemiacare.org.uk)
I suspect that this is what your Consultant is referring to but please do check with your Clinical Nurse Specialist so that you feel reassure.
I do hope this is helpful.
Kind regards
Gemma
