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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.

MDS relapse

Tallgal
Posted by

Hi Caroline,

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. 

Thank you! 

Tallgal x 

Tallgal
Posted by

Hi Caroline,

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.

Thank you,

Tallgal

Caroline- Macmillan

Hi Tallgirl,

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.