Ask about leukaemia

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

T-cell acute lymphoblastic leukemia (T-ALL)

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My son's mother and ex wife was diagnosed with the above approximately 3-4 months ago and has been through chemotherapy for most of that. She was told about 2 weeks ago that the latest tests (Bournemouth) had come back clear but the tests sent to London could still detect a minute part of the disease.

She was sent home for a few days to await the next round of chemo (I think Nelarabine) to attack and last bit. Also there was a 9/10 possible donor for the bone marrow transplant. So the news was great.... however.

Unfortunately a few days at home she was readmitted with a high temperature and has now been told after tests that the disease has returned as aggressive as ever.

So my question is really, I'm assuming they will try and get the disease back to 0% again by means of chemo etc... but if the cancer has come back at such a rapid rate, is this possible and does the original prognosis change based on the aggressiveness of the disease? In a nutshell really (and I realise this may be a case of "how long is a piece of string") what is the long term prognosis?

Thanks :(

Caroline- Macmillan

Hi there,

I am so sorry to hear this. The plan at this stage would be to try and get her into remission as quickly as possible and go straight to transplant without delay. Sometimes the disease mutates as you go through treatment and things change or the disease is refractory to treatment.

You are right to be concerned- it may not be possible to get her back into remission- but it does happen. Long term the prognosis is more guarded than before and it will depend on how she responds to the next round of treatment, if the outlook will improve. If she does not respond to treatment, the likelihood will be that they will discuss palliative care with you both.

I am sorry to be giving you such awful news. if you have anymore questions, please come back to me or ring the support line on the number below. Good luck. 

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.