CML plus extras!

Hi everyone! I am a 52F who was diagnosed with Chronic myeloid leukaemia in February. Apparently I’m ‘complicated’ and have been described as their ‘million dollar patient’.

I was originally diagnosed with Myelofibrosis as my bone marrow is very fibrotic, but in a deep dive into my genetics, they found the BCR-Abl mutation, hence the change of diagnosis to Chronic myeloid leukaemia. I also have an ASXL1 mutation, which means I may not be as easy to treat. I also had swollen clavicular lymph nodes and upon biopsy, I recently had a letter to say they found Kikuchi-Fujimoto Disease in the node, but luckily, no blasts and so they ruled out me being in blast crisis!!! (Still want to know more about this KFD though, wish they’d told me rather than finding out by a letter).

Anyway, they prescribed me Nilotinib, as they said it was ‘fast acting’ as I’d been so unwell.

I have been taking it for 6 months now and have been doing really well. My levels of mutation dropped to 0.5% after 3 months. I have recently started to get some side effects (nausea, headache, increased shortness of breath, chest pain, haemorrhoids) which I will discuss in detail at my next appointment in 10 days.

I do have one question though, and this may seem very trivial, but will I ever regain my strength and fitness? I thought the decrease in both was all down to being so poorly and bed/sofa ridden for the first 3 months prior to diagnosis. However, the aches and breathlessness seem to be getting worse, not better. Is this just the cancer, the medication or just a new ‘me’ that I have to learn to accept? It has also given me anxiety, which I am also struggling with and have never had before.

Thanks for any help xxx

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hi @Roo a great big welcome to our forum and no question is too trivial on here.
However because we are such complex beings your question is best discussed with your medical team.
I am really glad that you have your next appointment in 10 days time.
Perhaps write down all your anxieties and questions so you have them ready to ask then.
It might also be an idea to write down all your symptoms and their severity and impact on your lifestyle, including your anxiety.
Your GP might have some ideas to help your anxiety, it is personal choice but I found counselling helped me.
Here is a link to Blood Cancer UK ideas on mind and emotions Blood cancer: mind and emotions | Blood Cancer UK
The Blood Cancer UK support line is also there for you to talk to someone on 0808 2080 888
Please do let us know how you get on and be kind to yourself

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Hello @Roo. Welcome to this forum and thank you for sharing your story with us. It takes some courage, I think. I was diagnosed with a Myeloproliferative neoplasms (MPN) thirty years ago. At the time the doctors found it hard to classify and of course they didn’t know about all the genes involved then. I was told it had features of Essential thrombocythemia (ET) and Myelofibrosis. In recent years the fibrosis in my bone marrow has increased and I no longer have features of Essential thrombocythemia (ET). I do find that when my haemoglobin (Hb) is particularly low I ache more and suffer with breathlessness so it might be worth getting your Hb level checked. As @Erica has mentioned some find talking with a therapist helpful. I have regular therapy sessions and I wish I had been brave enough to ask for help sooner. It sounds like you have been through so much in recent times. I look forward to hearing more about you and I hope you find this a supportive place. Warm wishes, Willow x

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