A support group for anyone affected by leukaemia to come together, share experiences...
Although we make every effort to ensure accuracy, Macmillan Cancer Support cannot accept liability for this information, or for third-party information such as other websites to which we link. If you are concerned about your health you should consult your doctor. Please bear in mind that your question can be read by others - don't post your contact details or any other information that could personally identify you. All answers will be based on information that is correct at the time of posting.
I have had some email correspondence with Jane which has been reassuring about my Mum's recurrent MDS. She was over 500 days post SCT and doing so well (chimerism near 100%, appeared to be in complete remission) but suddenly her latest bone marrow biopsy has showed that her MDS has returned with 22% blasts.
She is now going to be treated with Azacitidine with a view to a Lymphocyte top up.
All very scary but her consultant and team are optimistic. I understand from Jane that Azacitidine can be very effective and put MDS back in remission (with Lymphocyte topped up!).
We only got the news yesterday and so everything is pretty raw - I guess I am just looking for reassurance that Mum could bounce back into remission and still have some good years ahead? Is it common for Azacitidine to work well post transplant?
Mum has had some Azacitidine before and it worked to keep blasts at bay.
Since my post the other day, we have found out that Mum is not now eligible for Aza as her "other blasts" (didn't realise there were two types of blasts!) in the actually bone are too high (40 to 50%).
They are now looking at other treatments such as intensive chemo, second transplant and also about referring her to King's College to be treated by the specialist MDS unit.
Seeking some ray of light! They have reassured us that the relapse has been caught early and that there is no abnormal cells in her bloods so far so contained in the marrow.
I have read about patients doing very well after a second allo SCT.
I'm sorry to hear about your mum, you have all had quite a week!. Your mum has a number of options and as she is very well and there are no blast cells in her bloods, she has time to pursue these options. Being fit and feeling well will also stand her in good stead if she goes onto have a second transplant.
There are many patients who do very well after a second transplant but she will need intensive chemotherapy first to get her into remission. It is important to go into a transplant with your eyes open, knowing the risks- as you well know. A second transplant can be riskier so make a list of questions for the team and make sure your mum has someone with her at all her appointments.
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.
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: