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Hi All,

I’m so pleased to have found this forum which looks to be an amazing source of information and support.

As the title says, I am newly diagnosed - just yesterday. It has only been a week since the first blood test which set all the wheels in motion to get to this point. My spleen is very enlarged so I’m starting on Dasatinib next week.

My head is still spinning. There seems to be such a lot to worry about! I am 42 and a busy mum to two young daughters with a challenging full time job and I’m just wondering how on earth I’m going to cope. Everything felt like a difficult juggle before, let alone how we will all manage once the side effects kick in.

If anyone has any good tips for things that have helped them to stay on top of everything, or positive stories of treatment with Dasatinib, I would love to hear them!

Many thanks! X

Hi Kat,

Welcome to the Forum!

I was diagnosed with CML at a similar age to yourself 10 years ago. My spleen was also enlarged, this is how I ended up being diagnosed, since this was causing abdominal pain and indigestion, resulting in me contacting my GP and then finding out my White Blood Cell Count was very high. I was sent to Haematology at the Hospital the following day. I'm currently on Dasatinib and making good progress (I am in Deep Molecular Remission, which means my BCR-ABL level is below 0.01%). I have also managed to work full time for most of the time since being diagnosed.

I remember those first few weeks and months. There is a lot of information to process whilst you are still in shock from being told you have a form of Cancer. Please look at the 'Just Diagnosed?' section under the 'About CML' Tab on this website if you haven't already. There is some useful information there.

The main thing I can say to reassure you is that CML is a treatable disease for the vast majority of patients. If you are in Chronic Phase and have a good response to one of the 6 TKI's (Dasatinib is one of them), your life expectancy will be in line with the general population.

The main thing you can do to give yourself the best chance of a good response to treatment, is to ensure you take your TKI (Dasatinib) every day without fail (unless your Consultant advises you to temporarily pause taking it).

Please keep in touch and let us know how you are getting on.

Take care,

James

Thank you so much for your helpful reply, James. Wonderful to hear that you’re doing so well on Dasatinib. There is a lot to be grateful for with these amazing TKIs. I clearly remember learning about them at university over 20years ago. Never would have dreamt then that they’d be saving my life one day!
Thanks again, K.

Hi

First of all, I just want to say I’m so sorry you’re facing this diagnosis—it’s a huge shock, especially when you’re juggling a full-time job and raising children. But I want to offer you real hope: I was diagnosed with CML ten years ago, and I’ve been on imatinib ever since. I’m now 64, and my life has continued—full of meaning, activity, and even joy.

The treatments for CML today are remarkably effective. Imatinib has kept my condition stable for a decade, with minimal side effects. I know the word “leukemia” is terrifying, but CML is a very different kind of beast now thanks to targeted therapies. I’ve seen people live long, full lives on these medications, raising their kids, building careers, and making plans for the future—just like anyone else. You’re not alone in this, and you’re stepping into a community that understands and supports one another. Things will settle. Give yourself time, and be kind to yourself.