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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia and Myeloproliferative diseases. She'll aim to respond within 2 working days.

Myelofibrosis transitioned to AML - Severe Anxiety

poppy daisy
Posted by

Hello

My mum (74) was diagnosed with ET 14 years ago, 5 years ago it transformed to Myelofibrosis and she has in the last 3 weeks been diagnosed with Acute Myeloid Leukaemia.  She has been under the same haematologist throughout and has been monitored and looked after extremely well by her.  The last routine bone marrow biopsy 3 weeks ago picked up that she has now progressed to AML stage and has just finished her first 7 days of treatment with Azacitidine (also continuing on Ruxolitinib which she has been on for 2 years).

My mum has always said to the family in the past that if she caught anything terminal or nasty or cancerous she never wanted to know the full extent because she wouldn't be able to deal with it.  As such for the last 14 years she has known that she has had a blood disorder but only recently realised that it was a form of cancer, even then we've had to play it down for her.  At her last meeting with the haematologist  she was asked to bring her family along (me and my sister) and was told that she had Luekemia (AML) she was told how serious it is and that the aim is to give her quality and length of life with Azacitidine if possible.

She has taken it extremely badly, she lives alone and because of the Coronavirus and her very low immune system she is more or less housebound.  She is so anxious and living on her nerves, full of worry about dying, waking in the night fearful that she won't wake up at all, worrying what people will think of her, how the end will come etc etc.  I really feel she needs anti anxiety medication and wondered if you could recommend how to about it so she gets treatment soon, and maybe counselling (she lives in Aylesford, Kent).  Her GP is very hard to get an appointment with, it can take months.

Thankyou in advance for any advice.

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Caroline- Macmillan

Hi Poppy daisy,

I am sorry to hear this. I would suggest that you go back to her clinical nurse specialist and ask about the local counselling options and request a referral. The hospital will have sent a letter to her GP giving them the information so it might be useful to ring and ask to speak to GP or the nurse practitioner for some medication. Information will be available on local services in your local Macmillan or Maggie's centres. 

I hope this helps

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.