Hello, my friend was diagnosed with CML and started on an oral chemo. He doesn’t speak about it much and prefers to just do what the doctor suggests and shares little update but I do know that his his initial blood test showed WBC of 800, after 6 weeks oral chemo this was down to 650 so they kept him on same regime but latest test show it’s back up to 760. He’s now taking a double tablet every other day (they are worried he’ll end up anaemic) but is there any chance this will help or should he be looking for a new treatment? He’s almost 80 so really worried
A very warm welcome to our forum & thank you so much for sharing your worries around your dad. I am sorry to hear of his diagnosis & I hope you are all coping okay?
We appreciate how worrying it can be to have a loved one going through treatment, especially if we see a fluctuation in their response and blood counts and with the added difficulty of your dad dealing with this some what privately.
May i ask does your dad have good support from his haematology team?
Your concern is a valid one and typically both the decision & rationale to change treatment will be guided by his consultant. So we would always encourage your dad to have open conversations with his team around any concerns he or you may have.
It can be normal for a team to adjust & titrate chemo doses and allow for a period of monitoring before any further considerations are taken.
In case it is helpful in any way we do have some information on possible treatments in those living with CML in our webpage below which may also help your dad or you facilitate the next conversation with his team- Chronic myeloid leukaemia (CML) treatment and side effects | Blood Cancer UK
Please also know that should you or your dad wish to talk thins through with us at any point, our helpline is open 7 days - Blood cancer information and support by phone and email | Blood Cancer UK
Take Care, Lauran
Hi @Minnie1 a great big welcome and so glad that you have found us.
I can tell how caring you are, but you are also so powerless to make decisions for the other person, especially when the other person does not speak much.
I believe it is fairly normal for treatments to be adjusted or changed.
I believe it will be up to the medical people to suggest alternative medications, unless others can share their experiences.
If either of you would like to speak to the Blood Cancer UK support line it is there for you.
I always believe in asking medical people questions like what the pros and cons of different medications, should I be worried etc
please let us know how you both get on, look after yourselves, be kind to yourselves and spoil yourselves
I too have CML.
My white cells fluctuate sometimes and generally indicate that I have been ill. Sometimes I have not felt unwell but other times I felt really poorly. My consultant is excellent at spotting these things and recognising what is a cause for concern and what is going to be an attack on my energy levels and general health. My chemo took a long time to get to grips with my mutant cells and they had a few team conferences to discuss whether they needed to change my chemo but in the end Imatinib did the job for me and I do really well now. It may be reassuring for you to know that there are these ups and downs and that medical teams are well versed in understanding them.