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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
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Since my latest post, my Mum has gone through Flag-Ida chemo and is now resting at home. The Flag-Ida has really wiped her out and she is resting and sleeping alot! I understand this is perfectly normal as Flag is such an intensive treatment.
We saw Mum's transplant consultant today and he said that Mum could either go the DLIs top up route or second stem cell transplant (they have an unrelated donor for her this time).
We are to touch base again in a few weeks with her stem cell team to see how Mum, her bone marrow and bloods are recovering from the Flag-Ida and how psychologically and physically fit she is for a transplant.
From experience, can DLIs prove effective in keeping MDS/AML at bay? I believe they are less effective than a SCT? Such a difficult decision, but Mum is determined to live a good life and get more years yet. If DLIs don't work, would other treatment be available?
We are also asking lots of questions of Mum's specialist nurses to gather as much information as possible.
Any advice would be appreciated x
This is an interesting one. I have read a few papers on DLI v second transplant and there seems to be no difference to outcome. However, the decision has to be made on how your MUM is at that time and how well she is. An unrelated donor transplant is tougher that a sibling transplant. She has also had a lot of treatment. That said, there is a risk of GVHD with the DLI.
I think the decision will have to be made with the team based on how well she recovers after this FLAG-Ida. Your team will weigh up all the benefits versus the risks involved. If the risks outweigh the benefits- DLI will be the way to go. There is no point in curing her AML/MDS if she is in heart failure/ renal or liver failure and her quality of life is zero!
For now, she needs to build herself up and feel healthy again. Keep asking questions, and write them down. You will not have to make this decision alone!
If you need any questions answered, just give me a shout.
Thank you Caroline, this is helpful. Mum is leaning towards the DLI route at the moment, which on reflection I think would be best for her.
But you are right, she needs to boost herself up and start to feel healthy again first. She is also scared about the thought of a second transplant. To be honest, the whole family is feeling very scared at the moment. So can DLIs be successful at keeping patients in long term remission/curing MDS? I start jumping to negative outcomes all too quickly recently which I know is not helpful.
That is perfectly normal to feel scared. Its hard to know what to do, but if you weren't scared, I would be worried that you didn't appreciate the gravity of the situation. I have a few patients who have needed DLI- its not uncommon. And they are very well.
Thank you Caroline. I know DLIs can be very effective and Mum did have one in August 2018 which boosted her chimerism right up again.
I just hope the Flag-Ida has done its job and kicked the nasty leukaemia cells right off, for good this time!
I am aware it has been some time since I updated you about my Mum.
I am pleased to say she is doing really well and starts her DLI treatment tomorrow to keep her MDS at bay long term. Her bloods level are good (Neutrophils at 5.1!) and chimerism holding strong at 99% peripheral and 97% T-cells. Last bone marrow biopsy was not concerning consultant either (although he did say sample was not great, but not concerned as her bloods are good and very stable). So Flag-Ida did the job!
So all in all, she is in a good place and long may it continue! Still hard to get my head around the relapse at times and her consultant has said durable remission or "cure" is 20-30%. Would of course prefer this stat to be higher, but understand high chimerism and good marrow puts my Mum in as good a position as possible?
Tall gal X
Hi there Tall girl,
I am so pleased to hear this and thank you for coming back to me and letting me know how she is. You are right, all is looking good at present and the chimerism may rise with DLI. She is in a great position. Long may it last and thank you again for coming back to me
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